Mammograms- New Govt Guidelines - Can't Believe!
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Topic: Mammograms- New Govt Guidelines - Can't Believe!
Posted By: 123Donna
Subject: Mammograms- New Govt Guidelines - Can't Believe!
Date Posted: Nov 16 2009 at 6:13pm
I'm furious!!!! My local news station just had a top story about the government's new guidelines for Mammograms. I'm sure all of us will be hearing more about it. What a bunch of Cr*p! If it wasn't for my annual mammogram, I know I wouldn't have caught my bc early. To me, it saved my life and I wasn't high risk - no family history, etc.
http://www.ksdk.com/news/local/story.aspx?storyid=189791&catid=40
Here's part of the story covered on the air tonight:
By STEPHANIE NANO and MARILYNN MARCHIONE, Associated Press Writers
NEW YORK (AP) -- Most women should wait until age 50 to get
mammograms and then have one every two years, a government task force
said Monday in a major reversal that conflicts with the American Cancer
Society's long-standing recommendation of annual screening starting at
40.
Also, the task force said breast self-exams do no good and women shouldn't be taught to do them.
For nearly two decades, the cancer society has been recommending regular mammograms beginning at 40.
But the government panel of doctors and scientists concluded that
getting screened for breast cancer so early and so often is harmful,
causing too many false alarms and unneeded biopsies without
substantially improving women's odds of surviving the disease.
"The benefits are less and the harms are greater when screening
starts in the 40s," said Dr. Diana Petitti, vice chair of the panel.
The new guidelines were issued by the U.S. Preventive Services Task
Force, whose stance influences coverage of screening tests by Medicare
and many insurance companies. But Susan Pisano, a spokeswoman for
America's Health Insurance Plans, an industry group, said insurance
coverage isn't likely to change because of the new guidelines.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Replies:
Posted By: musette green
Date Posted: Nov 16 2009 at 6:33pm
I hope the insurance companies do not plan to adopt this guideline for mammograms. I am glad I was screened at 49 (and yearly since age 41). If I had been screened at 50, I most likely have a very murky future and a harder fight than I did have. They must be crazy and driven by the might dollar!
------------- DX 10/08. IIB,gr 3, 2.5cm. TNBC, BRAC1&2-, nodes+(left axillary, supraclavicular, ant. mediastinal & IM). Neoadjuv. chemo 4x C/T. Left mast.3/09,completed 40 rads 9/09. Reconstruction pending.
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Posted By: lma
Date Posted: Nov 16 2009 at 6:40pm
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This makes me furious. If this was in effect 4 years ago, I'd be dead right now.
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Posted By: Autumn10182001
Date Posted: Nov 16 2009 at 6:44pm
I started my baseline mammo at 30 due to my aunt having BC, and, I never had children, smoked, was overwieght...etc. My first cancer was caught at age 39... and could not be felt, it showed on the mammogram... actually as they looked back, they should have seen it the year before at age 38.. this time it was found in a mammo, at age 49... the government are a bunch of idiots, it sounds like they are getting ready for a reduction of services for the new health care reform... they will do whatever they can to reduce the cost of the government public option, which soon will probably be our only option as employers are already cutting medical benefits.. just my opinion..
------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Posted By: NINASUZIE
Date Posted: Nov 16 2009 at 7:02pm
Can you also believe they're saying that Dr. Susan Love AGREES WITH THIS????? I just put this on my facebook page already to know that NO WOMAN BE DENIED ANYMORE HEALTHCARE OPTIONS! I had my first at 37 that was a fibroendenoma....that now is later an indicator of BC years later...so my "baseline" of no history or the younger women in their 40s, 30s, 20s....how about our 10 year old survivor out there?????? No SBE's....dear God I am making political calls already. This is very serious for us as TN! Every 2 years at age 50?????? I'm so angry I could spit nails.
------------- Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Posted By: Sunris
Date Posted: Nov 16 2009 at 7:08pm
Perhaps MANY MANY of us that are under 50 should stand on their front lawns & flash them our boobless / radiated (burned) / scarred breast as a reminder to them that there are MANY of us that NEEDED those mammos before age 50.
http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice
-------------
Dawn
Age 43 at DX
DX 3-09 IDC 3.9cm
TN-Stage2-Grade3
Taxolx9, FACx2, halted TX,
Lump.8-25-09..rads x 8wks.
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Posted By: Sunris
Date Posted: Nov 16 2009 at 7:21pm
http://www.breastcancer.org/opinion/mammography_guidelines.jsp
-------------
Dawn
Age 43 at DX
DX 3-09 IDC 3.9cm
TN-Stage2-Grade3
Taxolx9, FACx2, halted TX,
Lump.8-25-09..rads x 8wks.
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Posted By: mainsailset
Date Posted: Nov 16 2009 at 7:56pm
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I think perhaps this is the moment we ask the Forum to help us look into this and then create a Petition. Once one is correctly worded it can be passed along to some of the larger blog & then picked by the larger MSM. First step is to take investigate, find out who we can align ourselves with then get a well worded Petition together.
This has been in the works for awhile, not entirely brand new news but the harm that it could potentially do is simply immeasureable.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Nov 16 2009 at 8:06pm
mainsailset wrote:
I think perhaps this is the moment we ask the Forum to help us look into this and then create a Petition. Once one is correctly worded it can be passed along to some of the larger blog & then picked by the larger MSM. First step is to take investigate, find out who we can align ourselves with then get a well worded Petition together.
This has been in the works for awhile, not entirely brand new news but the harm that it could potentially do is simply immeasureable.
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Great idea, how do we do this? Is this something we can ask the new forum coordinator, Arlene?
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: 123Donna
Date Posted: Nov 16 2009 at 8:11pm
NINASUZIE wrote:
Can you also believe they're saying that Dr. Susan Love AGREES WITH THIS????? |
I saw Dr. Love on the NBC nightly news with Brian Williams and couldn't believe her support of the new regulations. It was all dollars and costs justification! No mention to the many lives that have been saved by early detection. How can they say routine breast exams are of no benefit either? I no longer respect her and will not be involved in her Army of Women campaign.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: beachgirl6
Date Posted: Nov 16 2009 at 8:15pm
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Guess Obama is really going to solve the health care crisis....if no one gets a mammo then you don't have anyone getting diagnosed!!! What better way to have no health problems...no testing!!!!! Sure the insurance companies are going to jump on this one. Its already hard enough to get the testing that you need once you are diagnosed so lets make it harder!! If Dr. Love supports this then I'll cancel out of the Army of Women!!!
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Posted By: mainsailset
Date Posted: Nov 16 2009 at 8:16pm
a better link http://www.associatedcontent.com/article/2398452/health_news_new_mammogram_guidelines.html?cat=5 - http://www.associatedcontent.com/article/2398452/health_news_new_mammogram_guidelines.html?cat=5
So I'm going to send this link over to FireDogLake Blog as a start. There's a great many women attorneys on the site, the owner is a 3x bc survivor. Hopefully she will do what she does best and that is FIGHT!
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Terje
Date Posted: Nov 16 2009 at 8:50pm
How about a provision in the new health care plan that says that if you have insurance when you become ill, it's a preexisting condition that must be cured before your insurance company is off the hook regardless of whether you continue to pay them or not.
That way the instant you get sick, you can stop paying your insurance premium and they still have to cure you.
Another provision should tie health insurance to a life insurance policy. For example if they can't cure you and you die, they have to pay someone $5M because they failed regardless of whether you continue to pay your premium or not once you're diagnosed.
If we did those two things, I bet the insurance companies would be pushing for mammograms twice a year starting at age 30.
It might push our insurance rates higher, but hey, if that's what it costs, then that's what it costs. At least the costs would be divided among all of us rather than just those who are sick and can't work. Isn't that what, "insurance" is all about anyway?
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Posted By: hhfheidi
Date Posted: Nov 16 2009 at 9:19pm
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I just took Susan Love off my Facebook. Now I'll cancel out ot the AofW too.
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Posted By: 123Donna
Date Posted: Nov 16 2009 at 9:41pm
Me too. No longer going to be part of Army of Women.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Nov 16 2009 at 9:49pm
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Terje, I think you're confusing something here. Health Insurance Companies are businesses. They are responsible to their shareholders, not to the patients, plain and simple. They provide coverage funds after you pay your premiums based on the contracts you sign. They have no obligation to cure you, not one. Your medical team has the obligation to bring their best efforts to bear on curing their patients' ills. Both have the obligation to follow the law and I'll say for my doctors they have also followed their hearts, but as far as the insurance companies their only obligation is to fulfill their contract with you and to pay out monies to your health care provider.
This is one of the reasons that a single payer system would have been, in my humble opinon, a much better system for our Congress to have adopted. As long as you have private industry providing insurance monies for your coverage they will be bound by the laws of commerce and as we all know, those laws do not include one that covers compassion, it's just not there.
The stories are all over the internet tonight on how this panel's opinion will likely change coverage for mammos, even though the panel indicates that they're not saying don't get mammos just know your risks.
In a warped sense this is even worse than not covering pre existing conditions, it's instead turning a blind eye on prevention.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: outnumbered
Date Posted: Nov 16 2009 at 10:05pm
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OMG, if it werent for mammos or especially in my case self exam, I would be 6ft under by now. I was 40 when I found it myself, and my best friend was 43 when she and a mammo found hers. I guess us younger pre 50 set are disposable, especially since TN is more agressive. I guess if we aren't here, there won't be costs associated with treating us! OOOOHHHH I AM SOOO MAD!!!!!!!
Oh I just want to rant!!!!!!!
Who can I write to on this nonsense?
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: Terje
Date Posted: Nov 16 2009 at 10:07pm
Mainsail, I agree, the insurance companies are businesses are responsible to their shareholders and they also have to follow the laws.
That's why I'm suggesting that the law require them to cover conditions that arise while you're insured and continue to cover those conditions until you are cured of that condition.
To make sure they do their best to cure you, I suggested they add a requirement that all health insurance policies be tied to a life insurance policy.
It's up to use to choose the insurance with the largest life insurance policy tied to it.
In addition I believe we should have a single payer system and that system doesn't need to be perfect. The private health insurance will compete with it. The government run plan won't have the life insurance deal and probably won't cover as many treatments, but it should be free and everyone should qualify.
I actually found a link to a single payer health care plan that I really like on that site you linked me to (the first one), but it doesn't say anything about my two ideas above. I would like those to be included and then I believe it would be the perfect plan. I'm still reading it though. I'm at work now and have the web page open on my home computer. I'll read more tonight.
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Posted By: unklez
Date Posted: Nov 16 2009 at 11:23pm
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Good idea Dear Terje....
------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Posted By: Darla
Date Posted: Nov 17 2009 at 1:22am
Hello All,
I was shocked when I read the new guidelines. My cancer was diagnosed via a routine mammogram at age 40. You can bet the insurance companies will be all over this as well as Medicare and Medicaid. Who's to say who's "high risk"? Perhaps this panel should recommend routine BRCA testing - I don't think that would go over well with the private or govt. payers.
We really do have to do something as a unified group. We, as TNBC patients/survivors/family members are a unique group in terms of average age at diagnosis and TNBC is so aggressive. There has been so much press about TNBC lately and good research and now this is like a slap in the face. When you read the guidelines you can't help but feel that those doing the statistical modeling view us as nothing more than outliers. Are we really headed for a utilitarian model of health care delivery?
I can't wait to see the guidelines they come up with to determine who is high risk. Most BCs are not genetic, so will a family history of BC no longer be considered sufficient to warrant mammograms beginning at age 40? What about race? We know that TNBC disproportionately affects minorities but many of us are white, will the guidelines be different for different racial groups?
I am sorry to go on such a rant - but it's so upsetting to read that a procedure that saved your life is essentially not cost effective and thus should be discontinued. I understand about false positives and unnecessary anxiety and biopsies, but what is more important, reducing anxiety or reducing cancer deaths? They should be working on more accurate screening techniques and greater access to MRIs for younger women with dense breasts. Mammograms aren't perfect but until they develop better options they must allow us access to what we have.
And then, to top it off, they tell women that breast exams, either self or by a doctor are useless. One doctor who was responding to these guidelines in vehement opposition to them said something like (paraphrasing here) - They are telling women "don't get mammograms, don't do self-breast exams, and don't have your doctor do breast exams". It's crazy.
Darla
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Posted By: SagePatientAdvocates
Date Posted: Nov 17 2009 at 9:59am
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a statement from Susan G. Komen for the Cure/Dr. Eric Winer, Chief Scientific Advisor to Susan G. Komen for the Cure and also on TNBCF's scientific advisory board..
SUSAN G. KOMEN FOR THE CURE® RECOMMENDS NO IMPEDIMENTS TO BREAST CANCER SCREENING Until Science Improves, Current Screening Recommendations Should Remain, World’s Leading Breast Cancer Organization Reports DALLAS – Nov. 16, 2009 – Susan G. Komen for the Cure®, the world’s leading breast cancer advocacy organization, has carefully reviewed the data and new recommendations from the U.S. Preventive Services Task Force (USPSTF) concerning mammography screening. Komen for the Cure issued the following statement today from Eric P. Winer, M.D., chief scientific advisor and chair of Komen’s Scientific Advisory Board. “Susan G. Komen for the Cure wants to eliminate any impediments to regular mammography screening for women age 40 and older. While there is no question that mammograms save lives for women over 50 and women 40–49, there is enough uncertainty about the age at which mammography should begin and the frequency of screening that we would not want to see a change in policy for screening mammography at this time. Komen’s current screening guidelines can be found at http://www.komen.org/ - and would not be changed without serious consideration. Our real focus, however, should be on the fact that one-third of the women who qualify for screening under today’s guidelines are not being screened due to lack of access, education or awareness. That issue needs focus and attention: if we can make progress with screening in vulnerable populations, we could make more progress in the fight against breast cancer. Mammography is not perfect, but is still our best tool for early detection and successful treatment of this disease. New screening approaches and more individualized recommendations for breast cancer screening are urgently needed. Susan G. Komen for the Cure is currently funding research initiatives designed to improve screening, and we believe that it is imperative that this research move forward rapidly. Komen also provides funding for more than 1,900 education, awareness and screening programs. We encourage women to be aware of their breast health, understand their risks, and continue to follow existing recommendations for routine screenings including mammography beginning at age 40.”
................
for whatever it is worth, I agree with the above position. Also, it is important to note that some of the same organizations that support the change in mammogram testing also support an end to to Breast Self Exams. My daughter and many other women I know found their tumors via Self Breast exam because physicians did not recommend mammograms till age 40. Yes, no system is perfect and MRIs which can be much more sensitive than mammograms, particularly with young women with dense breasts, have even more false positives than mammograms, yet MRIs can be an important tool.
I believe this has been a very sad day for breast cancer surveillance. We are moving backwards if these guidelines are followed and the folks who will suffer are the women who will be diagnosed with more advance disease with dire consequences.
all the best,
Steve
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: SagePatientAdvocates
Date Posted: Nov 17 2009 at 10:26am
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p.s. don't know if it necessary, but with our new Moderator, wanted to make the following statement, for personal full disclosure purposes, as well-
I am honored to be in the Susan G. Komen Advocates in Science program but the organization did not request that I post this. I decided to on my own. I also have had the pleasure to meet Dr. Winer several times and spoke with him briefly recently. He also did not request that I do anything. I am a huge fan of his. I feel he is one of the brightest physicians/researchers/experts in the country regarding breast cancer surveillance and treatment and I also feel he truly cares about a woman's well-being.
In Yiddish, there is a word..mensch..It is my highest compliment of a person and it is an apt description of Dr. Winer...and again I do not mean this in a religious context. He is just a fine man who happens to also be an outstanding scientist/physician.
all the best,
Steve
mensch·es or mensch·en (m n sh n) InformalA person having admirable characteristics, such as fortitude and firmness of purpose: "He radiates the kind of fundamental decency that has a name in Yiddish; he's a mensch" (James Atlas).
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: 123Donna
Date Posted: Nov 17 2009 at 10:32am
I asked ArleneB (our new moderator) what we can do to oppose these new guidelines. She told my any official statement(s) from the TNBC Foundation must come from the board and that she will pass this on to them. Thanks Arlene!
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: outnumbered
Date Posted: Nov 17 2009 at 10:42am
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Steve, I agree, Dr Winer is THE BEST!!!!!
I sent an email to the one of the TNBC board members and she is in getting in contact with the medical advisors to make a statement and see what we can do.
I just cant get this out of my head!!!!
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: mainsailset
Date Posted: Nov 17 2009 at 10:51am
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When you combine the conclusion of this new Guideline with the premise of the thread below that I posted it becomes obvious that what what this is all pointing to is education of women and even pre treatment of cancer.
Would it be reasonable to have women when they turn 40 (I certainly would like earlier) to offered to them the BRCA testing, to have a conference with their doctors which would outline to them their family history for not only bc but the whole works in cancer and then maybe heart etc. This would be done with the blessing of the insurance companies (who could no longer deny them coverage based on what the outcome is) at an annual physical. The doctors would review the dangers, stress factors, opportunities, the whole nine yards at that time and then decide a very personal course of action.
As the thread I posted yesterday posed, there is a premise in our medical society that we service bc more like an emergency room treatment (after the fact) even though there are ways to not only detect early but medications (and this is where our research should add to the list) that can slim down the chances of developing bc in the first place. If the medical community, including research, with the blessing (they pay) of the insurance companies sat one down, developed a personal health care plan at 40 I would think we'd end up with fewer of these Free Clinics like last weekend's New Orleans one where 83% of the people who showed up were employed with no insurance and had life threatening illnesses.
So rather than go along with fewer mammos in the 40's how about the 40's start out with a personalized review which includes specific options for each and every woman. (It's the idealist coming out in me)
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Nov 17 2009 at 11:16am
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Dear Sara, Mainy and all,
It is my understanding that BRCA+ women, or others at high-risk(not sure how that is defined, precisely) would not follow the new guidelines...
to be honest, I do not know if relatives of women with TNBC would be considered high-risk if they had tested BRCA negative...There is so much familial cancer with an unknown cause that I am not sure what the criteria are...
Mainy, testing women at 40 who have a profound hx of breast/ovarian cancer in the family is 15 years too late..BUT I think your ideas are excellent...
Memorial Sloan Kettering in NY announced a plan recently that will involve offering genetic counseling/testing for the BRCA mutation to ALL women having ovarian cancer surgery at their hospital.
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: outnumbered
Date Posted: Nov 17 2009 at 11:32am
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Steve - unfortunately there are many like me that do not know they are at risk until after the fact. I know my children will be safe from the new guideline because of my status, but I am more concerned about those thousands like me that have no idea they are high risk. For some of us that gene is silently hidden within our families. Others, like you mention, dont have the BRCA gene at all, there is another undiscovered gene. The most at risk are those like me , young women who had no family history, no KNOWN risk factors, and are sitting ducks.
Oh this is so dangerous!
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: mainsailset
Date Posted: Nov 17 2009 at 11:37am
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Thanks Steve, in my roughshod way of questioning this new Guideline, I ended up questioning our whole way of looking at health and healthcare.. Do read if you get a moment the thread below "False Dichotomy"
Your comment about the 40 being 15 years too late brings up the obvious problem we all share here with a TNBC dx...TN hits women early and the mammos at 40 clearly miss our target health alltogether.
Which brings me back to preventative health. It would be nice if a family had one member dx with TN that the rest of her family is brought into the fold of discussion and evaluation. A watch is set up, healthy choices suggested. In the past, we have been fearful of even discussing this because it seemed it would be a red flag for new employers not to hire someone if they had a history or were themselves a pre existing case (God forbid that a women who has a family member who tests BRCA positive is then herself considered a person with a pre existing condition)
If indeed the pre existing condition scenario will now die a well deserved death, would it not be time to start genetic counselling together with risk counselling at at younger age...say at 21, 30 & followup 40?
**quick note, I see Paul Allen of Bill Gates/Genotech association has just been dx'd with Hodgkins cancer**
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Nov 17 2009 at 11:42am
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sorry for all the posts but these new guidelines have me a bit crazed...as in infuriated...
what is going to happen, in my opinion, is that women will be diagnosed at later and later Stages(with many dying) and these folks will do another study in 10 years, perhaps, and say "well maybe this wasn't such a great idea"; and why will they say that?-economics...It will cost an insurance company a lot more to treat a Stage III/IV breast cancer than a Stage 1. But maybe they have done the math on that, already, huh? Maybe not paying billions of dollar for mammograms, needle biopsies etc outweigh what they pay of Stage III/IV cancer?
Another very difficult situation in my opinion is Medicare...
Medicare will not pay for a prophylactic bi-lateral mastectomy for a BRCA+ woman; they will pay for a bi-lateral mastectomy once she has cancer..nor will they pay for genetic/counseling testing even if there is a profound family hx of breast/ovarian cancer.
as Dana Carvey, as the Church Lady on SNL used to say..."now isn't that special?"...come back when you have cancer...what a marvelously enlightened policy, huh  ?
Medicare and many insurance companies feel that a prophylactic bi-lateral is "cosmetic surgery" so not eligible for payment. That is such a profoundly ridiculous view that I cannot even write on the subject. My daughter is still tortured over the loss of her breasts....grrrrrrrr!!!!!!
o.k. I promise no more posts on this topic for awhile...But as our dear former President Clinton used to say "it depends on how you define awhile  ."
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: krisa
Date Posted: Nov 17 2009 at 11:53am
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the guidelines are great if a person knows they are not at risk for breast cancer. and how would you know that you are not at risk? i didn't fit the risk category at all.
i found my lump--what if i followed the new guideline ...
the new guidelines are horrible!
at this point, the guidelines don't affect me because i am considered high risk, i worry about all the innocent unsuspecting people who don't realize they are a high risk.
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Posted By: mainsailset
Date Posted: Nov 17 2009 at 11:57am
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Exactly, and as we all know, many of the treatments, expectations, recurrence rates, etc are based on the size of the tumor once it is discovered....oh I could get so nasty here.
And what is cosmetic surgery for a statistician is a personal life saving treatment for a woman. It all comes back to personalized care and I truly believe that is what this is highlighting, care for American women in whatever form needs to be personalized not generalized.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: outnumbered
Date Posted: Nov 17 2009 at 12:06pm
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We are just a statistic... It sux if you fall on the wrong side, oh well....Que Sera Sera...
GRRR
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: mainsailset
Date Posted: Nov 17 2009 at 12:09pm
Watching Dr. Susan Love on MSNBC debating man from Cancer Org and she is coming across as someone I would NEVER support. Nada.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Autumn10182001
Date Posted: Nov 17 2009 at 1:22pm
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Am I reading this wrong.. is the NBCC agreeing with the new guidelines..
http://takeaction.stopbreastcancer.org/site/R?i=MGo8brB3MMOVYUX8QSK4Xg.."> |
| http://takeaction.stopbreastcancer.org/site/R?i=BCtNTFF9TTvOsHlTif63WA.. - GIVE |
http://takeaction.stopbreastcancer.org/site/R?i=0IXznyAE8YLLBIVbKH9Bhw.. - LEARN |
http://takeaction.stopbreastcancer.org/site/R?i=Oe45AahD5QDbVqRawqgwVQ.. - ACT | |
| http://takeaction.stopbreastcancer.org/site/R?i=cCnUzmUUrziWihOQXihPWg.. - ABOUT US |
http://takeaction.stopbreastcancer.org/site/R?i=g6ITJmDv-XDonRN_bWylQw.. - EVENTS | |
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Dear Friend,
I want to share with you the National Breast Cancer Coalition’s http://takeaction.stopbreastcancer.org/site/R?i=0GcS3OwV5DfbgdhMk9o33Q.. - analysis of the revised guidelines on breast cancer screening issued by the United States Preventive Services Task Force on November 16, 2009 and articles from the http://takeaction.stopbreastcancer.org/site/R?i=JmjVQtA78e4Vp-juz23f0g.. - New York Times and the http://takeaction.stopbreastcancer.org/site/R?i=esLznW9j6B9RXy4r_VPb5g.. - Washington Post .
As most of you know, since its inception in 1991, NBCC has worked to inform Members of Congress and the public about the complexities that surround breast cancer as we work together to end this disease. NBCC stands for evidence-based positions on the important issues in breast cancer. We want the public to have the facts about this disease, no matter how complex. For years, NBCC has told the public the difficult truth about the limitations and risks of breast cancer screening, both for mammography and breast self examination.
Yesterday, the United States Preventive Services Task Force (USPSTF), a government-appointed, independent panel of experts in primary care and prevention, released revised guidelines that, in part, reflect our long-held position on screening. Revisions include recommending against universal screening mammography for women aged 40-49, recommending every other year screening for women 50-74, rather than annual screening and recommending against teaching breast self examination.
Educate yourself about the http://takeaction.stopbreastcancer.org/site/R?i=JA1a4qTTHJ9Jt1Xcc6kA3w.. - myths and truths about breast cancer , specifically those related to http://takeaction.stopbreastcancer.org/site/R?i=omV6FxmGx3dCznlMfJ-GJw.. - mammography and http://takeaction.stopbreastcancer.org/site/R?i=qBhYojf5ze8yb1lTMFqsbA.. - breast self-exam (BSE) .
NBCC needs your support so that we can keep educating the public about the truth about breast cancer. We’ve always been ahead of the curve in examining and sharing the evidence with women and men everywhere. http://takeaction.stopbreastcancer.org/site/R?i=xHT5MHNM5hc8JDgQHXwu3A.. - Join NBCC and become a member today .
Thank you,

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------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Posted By: Darla
Date Posted: Nov 17 2009 at 1:33pm
Autumn,
I think you interpreted NBCC's position correctly. BCA supports it as well.
Darla
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Posted By: 123Donna
Date Posted: Nov 17 2009 at 3:15pm
Autumn,
Unfortunately you are reading it correctly. Did you see their #1 myth that monthly self breast examinations saves lives? I feel like the world has totally turned on it's side. So was October Breast Cancer Awareness Month a waste of time????
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: DeeDee
Date Posted: Nov 17 2009 at 3:25pm
Once again, I am so thankful for this site. I have been fuming since I heard the first report yesterday. My cancer was found because of my annual mammogram. Who knows what shape I would be in if I hadn't had my mammogram every year? I had no history of breast cancer in my family. But now, because of me, my three daughters have a family history of breast cancer from me and their paternal grandmother. All I have heard from this report is that "mammograms aren't that useful and SBE appear to be worse than useful." What I have not heard is how breast cancer is supposed to be diagnosed in women???? This scares me. I agree that we need some "big" power sources to counter this report.
Donna R.
------------- dx Nov.7, 2007
Lumpectomy Nov 15, 2007
1.05cm. stage 1 grade 2
sentinel lymph nodes neg.
chemo AC 4 treatments
30 rads ended April 2008
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Posted By: outnumbered
Date Posted: Nov 17 2009 at 3:30pm
I guess I should have ignored the lump I felt since I guess I am just too stupid to know my own breasts. We should be unaware, put our heads in the sand, and not say anything until its too late. Then, we will be treated like a cat who gets put to sleep because the treatment is too expensive! GRRR!!!! Wher does NBCC get their funding? Just wondering....
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: CarynRose
Date Posted: Nov 17 2009 at 3:39pm
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NBCC and Fran Visco were very persuasive in using their muscle in getting Herceptin approved; but refused to back Avastin for use in triple neg. breast cancer. Same reason --- as a whole, it didn't lengthen life.
I think she is in someone's pocket. Probably the insurance industry.
Ooooooh, I'm soooo mad!!!
Caryn
------------- Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Posted By: SagePatientAdvocates
Date Posted: Nov 17 2009 at 4:07pm
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Dear Sara and all,
I am sorry to disagree  with previous authors but my favorite NBCC myth is #13.
Myth #13: Everyone who has a positive BRCA 1 or BRCA 2 test result will get breast cancer.FALSE. While women with a positive BRCA test have a much higher chance of breast cancer, it does not guarantee the development of the disease.
.........................
I am surprised that everyone doesn't realize how clever NBCC is and how dumb we all are..My daughter and I carry the BRCA1(187delAG) mutation and with that mutation she had a 85% chance of getting breast cancer...my mom and her kid sister were dx at age 42, 41 respectively and my daughter was diagnosed with TNBC at age 36. By the way approximately 85% of BRCA1+ women who develop breast cancer develop TNBC.
What NBCC says is true, of course...not EVERYONE who has the BRCA mutation will get breast cancer..ONLY 85% with our BRCA1+ women and perhaps 70% with BRCA2+ mutations..
It is also a true statement that if you cross a busy street with your eyes closed you may not be hit by a bus, a bike, a car, taxi etc...but sooner or later if you keep crossing that street with your eyes closed you will be injured...is it guaranteed?, no, of course not but Myths such as this promoted by NBCC are extremely harmful, in my view, to the breast cancer community they serve. And to give credit where credit is due NBCC has done a lot for women with breast cancer especially fighting to get Herceptin approved and their work with the DOD but I believe that some of their myths are damaging...
A BRCA+ woman reading Myth # 13 may be led into a dangerous, false sense of security..I wish they would write Myth #32...you don't have to get the BRCA mutation from your mother.. ..like my daughter you can get it from your dad...Now that would be a helpful myth-buster...so that women realize this predisposition can come from their dads...
we are left with myths that are dangerous....
Contrary to NBCC's positions I believe-
Women should do Breast Self-Exams... Women should have mammograms on the schedule that currently exists Some women should consider MRIs for surveillance even though there are a lot of false positives Women who have the BRCA mutations should pay special attention to their risks and should consider prophylactic surgery/ies.
What we need in this country, in my view, are better, more-inclusive surveillance programs as Komen points out not a walk back into the dark past. My mother walked around for a year(1959) with a tender lump and was told "you don't have cancer because cancer does not hurt"...My daughter was told the same nonsense 45 years later...Yes, there can be a myth "cancer doesn't hurt" and that would be helpful because sometimes it does..
My mom was clueless about BRCA as was her mom who died of ovarian cancer at age 47... Now that we have the knowledge about this horrific mutation that affects thousands of women (particularly with BRCA1+ women who often present with aggressive early-onset TNBC) it infuriates me when I see a Myth #13, which is true, but is so, so, so, so horribly misleading...
Didn't I promise, earlier today, that I was finished with this topic? that was Myth #412..
Our community should fight to keep the current mammography schedule in my view...including Breast Self Exams..let's not be silent on this...
Another myth is that many breast tumors are slow growing so you can wait till 50 to do your surveillance. Well what about the women in the TNBC community who did not have a family hx and an aggressive TNBC tumor popped up...Is the best strategy for this woman-no BSE, no mammogram until 50? I honestly can't believe this is happening...we need to fight to make sure it doesn't.
Does a woman have to wait till she has a large palpable mass which is probably advanced disease? Please tell me this has all been a nightmare and it isn't really happening!!!!!
grrrrrrrrrrrrrrrrrr,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: 123Donna
Date Posted: Nov 17 2009 at 4:37pm
Steve,
I agree. I feel like I've just wakened up from a nightmare only to find I wasn't sleeping - this is really happening. I know I've told my story before, but I had none of the risk factors (except that I was a woman and had breasts). If it wasn't for my annual mammogram, who knows where I'd be right now. My mammogram saved my life!!!!!
Please tell me this is all a dream (nightmare)!
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: outnumbered
Date Posted: Nov 17 2009 at 5:09pm
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Steve, You are so well spoken, I wish I could express myself as well as you do. You would make a great spokesperson. (hint, hint, nudge, nudge)
This has been a nightmare all day for me. I keep trying to do other work, but I keep coming back to this. I just cant block it out.
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: 123Donna
Date Posted: Nov 17 2009 at 6:07pm
Will someone please explain to me why teaching breast self exam is wrong? No clear evidence that BSE reduces mortality? (See text below in "red") So if a woman does her monthly breast exam and finds a small lump and it turns out to be early Stage 1 bc, then there is no correlation to reduced mortality? Come on, give me a break. Donna
http://ww5.komen.org/ExternalNewsArticle.aspx?newsID=44299
Making Sense of New Mammography Recommendations
The
U.S. Preventive Services Tasks Force (USPSTF) has reversed its position
on screening mammography for women in their 40s: the group no longer
recommends routine screening mammography for average-risk women in this
age group. http://ww5.komen.org/#_edn1 - [1]
The American Cancer Society, however, has stated that it will continue
to recommend annual mammograms starting at the age of 40. http://ww5.komen.org/#_edn2 - [2] How
should women respond to this news? Calmly. There has always been debate
about whether or not to recommend routine screening mammography for
women in their 40s. The focus of the debate is the balance of risks and
benefits. The most important potential benefit of screening mammography
is a modest reduction in breast cancer mortality. Potential risks of
mammography include false-positive test results (which lead to stress
and additional testing), false-negative test results (a missed cancer),
and overdiagnosis. Overdiagnosis refers to the diagnosis of a cancer
that will never cause health problems during the life of a patient.
Overdiagnosis leads to unnecessary cancer treatment. For young
women, the balance of risks and benefits is different than for older
women, and may not clearly favor screening (although this point
continues to be debated). Young women are more likely than older women
to experience some of the downsides of mammographic screening, and are
also less likely to have breast cancer. That fact that the USPSTF
and the American Cancer Society now have different screening
recommendations for women in their 40s simply reinforces the importance
of educating yourself about the potential risks and benefits of
screening, talking with your physician, and making the decision that’s
right for you. This point is highlighted by the USPSTF, which notes
“The decision to start regular, biennial screening mammography before
the age of 50 years should be an individual one and take patient
context into account, including the patient's values regarding specific
benefits and harms.” The USPSTF statement is an update of its
2002 recommendations and is based on a review of the available data.
Since 2002, new data have become available about mammography in younger
women. Other highlights of the new USPSTF recommendations include the following: - For women between the ages of 50 and 74 years, the USPSTF recommends mammography every two years (rather than every year).
- The USPSTF notes that there is insufficient evidence to assess the benefit and harms of screening in women over the age of 74.
- The USPSTF recommends against teaching breast self-exam.
Although
the USPSTF’s position on breast self exams may also be perceived as
controversial, there has never been clear evidence that breast
self-exams reduce breast cancer mortality. It should be noted
that the recent discussion regarding mammography recommendations is
focused on women at average risk of breast cancer. Women at increased
risk as a result of family or personal history may need to begin
screening at a younger age, and may benefit from screening with breast
magnetic resonance imaging (MRI) in addition to mammography. Women who
have questions about the screening schedule and approach that’s right
for them are advised to talk with their physician. References: http://ww5.komen.org/#_ednref1 - [1]
U.S. Preventive Services Task Force. Screening for Breast Cancer: U.S.
Preventive Services Task Force Recommendation Statement. Annals of Internal Medicine. 2009;151:716-726. http://ww5.komen.org/#_ednref2 - [2] American Cancer Society. American Cancer Society responds to changes to USPSTF mammography guidelines. Available at: http://www.cancer.org/docroot/MED/content/MED_2_1x_American_Cancer_Society_Responds_to_Changes_to_USPSTF_Mammography_Guidelines.asp?sitearea=MED - http://www.cancer.org/docroot/MED/content/MED_2_1x_American_Cancer_Society_Responds_to_Changes_to_USPSTF_Mammography_Guidelines.asp?sitearea=MED Accessed November 17, 2009.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Nov 17 2009 at 6:14pm
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This is all over the news. CongressWoman Debbie Wasserman Schultz is fuming.
I maintain that the bottom line here is that cancer exists, it must be detected in order for a woman to receive life saving treatment. If mammo's don't work then women need to be given another alternative, you don't just yank what has been touted as the first line of defense for a generation without offering up a better resource.
If cancer is not caught, or is caught at a late stage, the odds go up our breast cancer survival rates will deteriorate.
The articles and MSM are all exploring the concept that the recommendations of this group, which is tasked with all kinds of recommendations beyond even this, will be put into practice by the Health Insurance Groups, that women between 40-50 will be forced to pay for the cost of a mammo out of pocket.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: outnumbered
Date Posted: Nov 17 2009 at 6:30pm
Funny how over the last 10 years or so the survival rate for bc has gone way up. Gee do you think that has anything to do with early detection?
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: 123Donna
Date Posted: Nov 17 2009 at 6:39pm
Sara,
I agree. Is that not "clear evidence"?
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Nov 17 2009 at 6:50pm
Outnumbered & Donna: Dr. Susan Love said that is an oversimplification. That instead the survival rate should be attributed to better chemo cocktails and overall treatment. She pretty well dismissed early detection as being anything more than negligible.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: dmwolf
Date Posted: Nov 17 2009 at 6:57pm
Don't get me wrong, I think the new guidelines are totally ludicrous, but my understanding is that the survival rates have increased in large part because mammography catches cancers that would never be found and never cause problems - cancers that have no real potential to do harm and that the body would take care of on its own or live with quietly. I'm totally in favor of mammography, and it seems like only an idiot would argue against BSE, but I'm not sure how much better off we are now than 30 years ago.
------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Posted By: Houston
Date Posted: Nov 17 2009 at 7:19pm
I saw Dr. Susan Love this morning on GMA and I was questioning her motivations. Does she have political aspirations?
------------- DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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Posted By: Terje
Date Posted: Nov 17 2009 at 9:17pm
mainsailset wrote:
Outnumbered & Donna: Dr. Susan Love said that is an oversimplification. That instead the survival rate should be attributed to better chemo cocktails and overall treatment. She pretty well dismissed early detection as being anything more than negligible. |
dmwolf wrote:
Don't get me wrong, I think the new guidelines are totally ludicrous, but my understanding is that the survival rates have increased in large part because mammography catches cancers that would never be found and never cause problems - cancers that have no real potential to do harm and that the body would take care of on its own or live with quietly. I'm totally in favor of mammography, and it seems like only an idiot would argue against BSE, but I'm not sure how much better off we are now than 30 years ago. |
I don't know if I am understanding you two correctly. If not my misunderstanding is leading me to an interesting conclusion.
I mean I agree with you all that it's better to find and remove cancer earlier rather than later, but I'm now wondering something.
First off, if what mailsailset said that Susan Love is saying is right, the reason for better survival rates is better treatments and not earlier detection, then this is a good thing, isn't it? I mean, if it's true, it seems that we're now better able to cure cancers regardless of when they are detected. I want that to be true, but don't know if it is.
What dmwolf said made me wonder, if there are all sorts of cancerous tumors out there that would never amount to anything and we can't tell the difference between those and the ones that will, if we never notice the benign ones we wouldn't include them in our survival rates statistics. If we come up with better tumor detection methods we'll detect more tumors that don't amount to anything and the survival rate statistics will improve even though our cures are not improving. I don't want this one to be true.
Cancer rates have been increasing over the years, and it seems that some people believe that actual cancer rates haven't been increasing but rather the number of cancers that are being detected are increasing.
I don't know, I'm just wondering.
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Posted By: SagePatientAdvocates
Date Posted: Nov 17 2009 at 9:26pm
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Hi Denise,
I think we are infinitely better off that we were 30 years ago...
I feel that way because of a speech that Dr. Eric Winer made at ASCO in Orlando this year..and similar statements by scientists I respect.
He stated that he is genuinely optimistic about better treatments for various cancers...perhaps even cures...because we now are MUCH closer to understanding the biological mechanisms involved and once we have that understanding we have a chance to conquer this scourge.
Thirty years ago my daughter would not have known she was BRCA1+....Dr. Mary-Claire King had not identified the BRCA1 gene at that point. My daughter having the knowledge enabled her to take steps to save her life. Thirty years ago the MRI technology that has found so many cancers at early Stages and saved so many lives did not exist. Thirty years ago PARP inhibitors did not exist. D. Winer and countless others are genuinely excited about them..Thirty years ago the human genome was not mapped. DNA mysteries are being unravelled.
Do we still have a long way to go? Absolutely, but I believe we are much closer to major positive developments...
hope you are feeling better.
love,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: kirby
Date Posted: Nov 17 2009 at 9:38pm
I am with you on that one Steve. We have made such progress. Even from my tx 9 years ago. However I do feel like we were just thrown under the bus with the new guidelines. All this work on awareness and early detection to now go back to what feels like " Don't ask, Don't tell." I'm really trying not to turn this into a woman's issue too. My mind can definitely wander there when I get p.o'd.
------------- kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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Posted By: mainsailset
Date Posted: Nov 17 2009 at 10:17pm
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Terje: a woman that has a benign tumor does not have cancer so she cannot be included in the survival statistics. Dr. Susan Love was replying to a comment that mammos were responsible for early detection which led to higher survivor rates. Her response was meant to deflect the credit that most people assigned to mammos and remind the audience that there was a larger picture, that chemo & radiation also shared the credit.
And to the point of early detection. We here are constantly faced with the words, early detection, tumor size, number of lymph nodes involved, Staging, Mets...and those words are sometimes obstacles that can bar us from a trial, diminish our percentage of chance to live,& cause us to have more stringent & life threatening treatments, so to think that every tool in the medical toolbag is no longer going to be available to us is indeed akin to being thrown under the bus as Kirby said.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: cduvall1
Date Posted: Nov 17 2009 at 11:03pm
beachgirl6 wrote:
Guess Obama is really going to solve the health care crisis....if no one gets a mammo then you don't have anyone getting diagnosed!!! What better way to have no health problems...no testing!!!!! Sure the insurance companies are going to jump on this one. Its already hard enough to get the testing that you need once you are diagnosed so lets make it harder!! If Dr. Love supports this then I'll cancel out of the Army of Women!!! |
The new guidelines were created by The United States Preventative Services Task force. The organization was created in 1984. When I first heard of the task force's recommendations I too was upset by the news. So very many of our TNBC women are under the age of 50, and we all know the importance of early detection with this type of breast cancer. Let's hope insurance companies do not use these recommendations to refuse reimbursement of mammograms for women under the age of 50. In general I agree with the substance and tone of beachgirl6's post, but don't see the connection to our President's task of solving the health care crisis. Google USPSTF and learn more.
------------- Carol
dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09
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Posted By: SagePatientAdvocates
Date Posted: Nov 18 2009 at 8:28am
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Awoke this morning to an article in the NY Times (which I will not post due to guidelines) but I am providing a link to the article and the NY Times "quotation of the day" which was-
- QUOTATION OF THE DAY -
"My patients tell me they can live with a little anxiety and distress but they can't live with a little cancer." - DR. CAROLYN RUNOWICZ, director of the Neag Comprehensive Cancer Center at the University of Connecticut.
"Many Doctors to Stay Course on Breast Exams for Now By PAM BELLUCK Despite recommendations that women should start breast screening at 50, not 40, many doctors said they were not ready to make such a drastic change."
http://www.nytimes.com/2009/11/18/health/18doctors.html?th&emc=th - http://www.nytimes.com/2009/11/18/health/18doctors.html?th&emc=th
.................
Yesterday afternoon, I listened to Anderson Cooper, on CNN, in my car and he had a representative from NBCC and The American Cancer Society disagreeing about the new proposed policy. This furor has become front page news and I am hopeful that the overwhelming support from groups such as ours and many, many others will help keep mammograms, on a regular schedule, part of the landscape if recommended by the physician and agreed to by the woman. Hopefully it will stay a woman's option, not a decision by an insurance company not permitting payment.
Somehow, I feel a bit better today..Maybe I am just naive. I hope not.
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: sharon in Mich
Date Posted: Nov 18 2009 at 9:22am
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Dear All--I like Steve was somewhat encouraged by the reaction in the NYT to the guidelines. The letters to the editor section had a number of letters from women diagnosed between 40 and 50, even one with TNBC. What I found distressing, though, were a couple of letters from male doctors dismissing this kind of evidence as "anecdotal". Can't we get the numbers out there? Xthousands of women per year get real diagnoses of BC before age 50. According to current statistics 30% of those will be aggressive hormone negative, either TN or hormone neg with her neu. Most of that group will die without treatment. That's a real number, not an anecdote. We want to assign all those women to an early, unnecessary death to save others anxiety over false positives or treatments that might not have been needed?
Come on folks. We have the technology to distinguish between the highly aggressive and the not so, but we can't use it if we don't find them.
Sharon
------------- dx 03/05 tn with lymph involvement, dd neo adjuvant AC+taxol, bil 08/05, 38 rads, BRCA-, NED.
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Posted By: Houston
Date Posted: Nov 18 2009 at 9:32am
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The task force is an indepenent panel sponsored by the US Department of Human & Health Service.
Should we go to a National Healthcare plan this type of government mandate will dictate our care. Only through commerce and competition will voices like the Komen foundation be able to have the impact they do in Washington. Once we have a single payor system we will have no options in the care we receive, even if we are willing to pay for it ourselves. The government will not allow doctors to provide testing even under their better judgement. Our care will be administered by statistics and government policy. Healthcare reform is necessary but not a natioanlized healthcare system. This is a taste of what to expect.
------------- DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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Posted By: SagePatientAdvocates
Date Posted: Nov 18 2009 at 9:43am
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Dear Houston,
I believe an organization like Susan G. Komen for the Cure will continue as a marvelous resource for our community even after a Health Care bill is passed (if it is..and I assume it will be)...I don't think we know what the final form of that bill will be but even organizations like NBCC have called for its passage.
What is a disaster, for sure, is getting breast cancer, without health insurance.
Our system is broken, and with all due respect to how you feel, it must be fixed.
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: Houston
Date Posted: Nov 18 2009 at 10:23am
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Steve,
I too am an advocate of insurance reform and healthcare available to all but I personally do not want to be part of a public health care system where the federal government dictates to my doctor what my care and screening should be. I am appalled at the SPSTF guidelines but think it gives those who are supporters of a public healthcare system another datapoint to consider.
With all due respect, the NBCC also supports the new USPSTF government guidlines so that does not give me comfort as to there position on the a public healthcare system.
Mary
------------- DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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Posted By: SagePatientAdvocates
Date Posted: Nov 18 2009 at 10:57am
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Dear Mary,
I think we are more on the same page than we might realize..
I, too, do not agree with NBCC's position on USPTSF as I wrote above..
the only point I was trying to make is that NBCC is avery large breast cancer advocacy group and if they are supporting the health care bill I do not feel that they feel their position as advocates will be marginalized, nor will Komen's.
We will have to see the final terms of the bill to see what it all means. My understanding is that many people can continue with their own health insurance (non-government).
As long as physicians can prescribe that a woman can have a mammogram I believe women will have mammograms..whether insurance companies will continue to pay for them is an open question and the more pressure patients can put on their physicians, congressman, if necessary, the better, in my view..
again, I was encouraged by the article in the NY Times today..
and Mary, at the end of the day, you may be correct and the new guidelines will drastically affect current practice, which neither one of us wants.
I had a long, heart-breaking conversation with a 65 BRCA+ woman the other day..she wants to have prophylactic surgery, as both her BRCA+ daughters had cancer and Medicare told her, in essence, "come back when you have cancer." Our government at its finest (not). 
my respect for you is and shall always be there...throughout this whole process on this and other subjects on the board I think it is best to be respectful, even though views may differ. The main thing here is an awful, aggressive cancer and we should all try to help each other.
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: mainsailset
Date Posted: Nov 18 2009 at 10:58am
|
Dear Mary, of course the public option that is before Harry Reed now would only affect a tiny portion of the American public (those who can't get health insurance through their employers). As it is now, today, we see this Guideline come forward which has just this morning been reported to affect the private insurance companies' decision to pay for mammograms (reported on MSNBC & CNN).
The rates for Health Insurance just went up 30% for my new insurance company and if they decline mammos for those under 50 there will certainly be members who will get less service for more money.
On CNN this morning they had a guest who was a woman in her mid 40's who had no bc history in her family. She faced the woman from the panel and said, under your new Guidelines my cancer would not have been found. There was no reason for my gp to suggest annual mammos, I would not have felt it necessary to do a monthly self exam. Under your Guidelines, I would not be here.
The woman on the panel started spewing stats and the moderator stopped her and asked her to address what alternatives were being offered....she was almost speechless. This isn't over yet.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Houston
Date Posted: Nov 18 2009 at 11:15am
|
I am not in favor of the new guidelines. Not sure what I wrote that would communicate that message. Sorry, if my message was unclear.
------------- DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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Posted By: mainsailset
Date Posted: Nov 18 2009 at 11:22am
I was responding to your comment about single payer system and how things would change.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Houston
Date Posted: Nov 18 2009 at 11:24am
|
Dear Steve,
This new position by the USPSTP is very thought provoking. Sincerely, thank-you. No disrespect taken or intended on my part. I appreciate the discussion.
Mary
------------- DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
|
Posted By: HairSprayMom
Date Posted: Nov 18 2009 at 11:46am
|
I agree with this being just CRAZY! I found my lump with self examination at 37. Then a mamogram confirmed the mass and led to surgical biopsy and my diagnosis. If these new guidelines had been in effect what would have happened to us? I have been on the Young Survivors site as well and many there would like to stage a protest at the White House to let the government know how we survivors feel, but no one knows how to plan or get it together. Imagine thousands of breast cancer survivors both young and old banding together to show how we feel about it. Imaging the coverage we could get and the attention we could draw to this horrible idea! Not sure what to do or how to go about it, but I am down for a good ole '60 protest!
OUTRAGED!
HairSprayMom 
------------- 39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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Posted By: Terje
Date Posted: Nov 18 2009 at 1:04pm
Houston wrote:
Once we have a single payor system we will have no options in the care we receive, even if we are willing to pay for it ourselves. The government will not allow doctors to provide testing even under their better judgement. Our care will be administered by statistics and government policy. Healthcare reform is necessary but not a natioanlized healthcare system. This is a taste of what to expect. |
Any national health care system will never be perfect, nor should we expect it to be. It should be the default option for those who choose not to acquire private insurance. Our national single payer system must not prohibit private insurance and I believe that it won't.
If you don't like what the government offers you, you should be able to choose something better, but you will have to pay for it just like you do today. But if you can't afford it, at least you'll get something (even if it's not that good) which is better than the nothing that you get today.
You can't say something that doesn't exist yet is going to be what you say it will be when we have the option to make it whatever we want it to be.
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Posted By: Terje
Date Posted: Nov 18 2009 at 1:10pm
mainsailset wrote:
Terje: a woman that has a benign tumor does not have cancer so she cannot be included in the survival statistics. |
I looked up, "benign" and discovered that it's not the right word to describe what I meant. I meant a cancerous tumor that isn't dangerous. I don't know if there's a word for that, and I assumed that, "benign" meant, "not dangerous" but in fact it means, "not cancerous" when talking about tumors.
I did find out though that there are, "benign" tumors that are dangerous because although they are not cancerous they are pre-cancerous, meaning that they have genetic mutations that are the first steps and only a few mutations away from creating a cancerous tumor.
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Posted By: mainsailset
Date Posted: Nov 18 2009 at 2:17pm
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Terje: ahhhh, I see what you were getting at. Interesting thought of whether these tumors are included in the survival stats, I would presume not, but it won't be the first time I'm wrong today if someone else has more to add.
On your thoughts of the single payer option. It's gone, sigh. The option now is available only to people who can't get insurance through their employer or who don't qualify for medicare. Unfortunately, this misses the point of putting pressure on the for-profit boys as it is now so small, and will be populated by folks who are likely to be already ill who have big costs to keep them well, so it won't be able to negotiate lower rates.
I'm very hopeful that the monopoly portion of the bill will do alot towards either breaking up the big boys or putting pressure on them to compete and thus lower the costs, but I'm also referred to as a PollyAnna from time to time so we'll see.
If these new Guidelines are incorpoated into the Standard of Care followed by Health Care Ins. it would seem plausible that something similar for more cancers will be comng down the pike. I am so cynical I can just imagine that eventually you'll go in for your once a decade physical and the doc will ask you how you're feeling, no tests and send you on your way. So many of the physical ailments that are out there simply don't knock on your door in the morning with a memo sayig hi, I'm here, time to do something...
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Nov 18 2009 at 7:25pm
HairSprayMom wrote:
I have been on the Young Survivors site as well and many there would like to stage a protest at the White House to let the government know how we survivors feel, but no one knows how to plan or get it together. OUTRAGED!
HairSprayMom  |
If a national breast cancer organization would step up and create a letter/email campaign to our senators, maybe the government would get the message. I received an email from the following organization where they had a letter prepared and all you had to do was provide your name and address and they emailed it to your appropriate senators. If someone hears about a similar campaign against these new guidelines, please let me know.
http://www.breastcancerfund.org/site/c.kwKXLdPaE/b.43969/k.73F7/Breast_Cancer_Prevention.htm?sid=257476332&msource=actn1109&auid=5603979 - http://www.breastcancerfund.org/site/c.kwKXLdPaE/b.43969/k.73F7/Breast_Cancer_Prevention.htm?sid=257476332&msource=actn1109&auid=5603979
OK folks, I hope the above link works but if it doesn't, please copy and paste into your browser. I seem to have much difficulty making these links active.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Terje
Date Posted: Nov 18 2009 at 7:45pm
Houston wrote:
Once we have a single payor system we will have no options in the care we receive, even if we are willing to pay for it ourselves. The government will not allow doctors to provide testing even under their better judgement. Our care will be administered by statistics and government policy. Healthcare reform is necessary but not a natioanlized healthcare system. This is a taste of what to expect. |
mainsailset wrote:
On your thoughts of the single payer option. It's gone, sigh. The option now is available only to people who can't get insurance through their employer or who don't qualify for medicare. |
Are you sure it's gone? I believe this is what we should push for (with a few changes).
I hope this link works.
http://thomas.loc.gov/cgi-bin/query/z?c109:H.R.676: - H.R.676
United States National Health Care Act or the Expanded and Improved Medicare for All Act (Introduced in House)
TITLE I--ELIGIBILITY AND BENEFITS
SEC. 101. ELIGIBILITY AND REGISTRATION. <-- On that page click here!
|
It says, "In General- All individuals residing in the United States (including any territory of the United States) are covered under the USNHC Program entitling them to a universal, best quality standard of care.".
It also says, "No Cost-Sharing- No deductibles, copayments, coinsurance, or other cost-sharing shall be imposed with respect to covered benefits.".
And, "Nothing in this Act shall be construed as prohibiting the sale of health insurance coverage for any additional benefits not covered by this Act".
I don't see anything in there that I don't like, there are just a few things missing that I would like added.
If you don't like the coverage that it provides, go ahead and get your own private insurance to cover all the additional stuff you want covered like maybe drugs and procedures that aren't covered by the single payer system. The act specifically says you can do that.
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Posted By: SagePatientAdvocates
Date Posted: Nov 18 2009 at 8:52pm
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Hi all,
I just watched HHS Secy. Sibelius, on CNN, say that the decision re: mammograms should be between a woman and her doc...Then Dr. Kopans, from Harvard Medical school, weighed in saying that it is clear that mammograms have saved lives in both women 40-49 and women 50 and above.
He also said "I know all the mammography experts in the U.S. and I do not know any of the people who wrote this report..none of them are experts in mammography."
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: dmwolf
Date Posted: Nov 18 2009 at 8:57pm
Thanks, Steve. btw, your mailbox is full. I tried to respond to your note about SABC (with an enthusiastic yes!) but got an error message. d
------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Posted By: SagePatientAdvocates
Date Posted: Nov 18 2009 at 9:00pm
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Dear Denise,
I fixed it..thought I sent you a PM that I did..please try again..
all the best,
Steve
and congrats on getting though the awful year...on to better days..
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: 123Donna
Date Posted: Nov 18 2009 at 9:10pm
Did anyone see the movie, Thank You for Smoking? It tells the story about the chief spokesperson and lobbyist who is the Vice-President
of the Academy of Tobacco Studies. He's a talented speaker spinning
arguments defending the cigarette industry - no proof that tobacco causes cancer. I see the same analogy with the new mammogram/bse guidelines.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: unklezwifeonty
Date Posted: Nov 18 2009 at 9:24pm
steve wrote:
............ Dr. Kopans, from Harvard Medical school, weighed in saying that it is clear that mammograms have saved lives in both women 40-49 and women 50 and above. He also said "I know all the mammography experts in the U.S. and I do not know any of the people who wrote this report..none of them are experts in mammography."...... |
Hopefully many more known doctors from respected hospitals will come out and discredit the people behind these dumb guidelines with similar or stronger words.
------------- Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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Posted By: 123Donna
Date Posted: Nov 18 2009 at 10:22pm
http://www.cnn.com/2009/HEALTH/11/18/mammogram.guidelines/index.html - http://www.cnn.com/2009/HEALTH/11/18/mammogram.guidelines/index.html
US Health Chief: No change on Mammogram Policy
Washington (CNN) -- A federal advisory board's recommendation
that women in their 40s should avoid routine mammograms is not
government policy and has caused "a great deal of confusion," Health
and Human Services Secretary Kathleen Sebelius said Wednesday. . . . .Sebelius' statement is aimed at "making it clear these recommendations are not ours," a White House source said.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Nov 18 2009 at 11:37pm
Terije: I'm positive the Single Payer is gone. Single Payer is the concept that people like Sen. Bernie Sanders (I) was for, it is the all govt option with no private choices. What we have now is the public option which will be severely limited to only those who cannot have access through their employer. (I'm over simplifying here but that's the gist)
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Terje
Date Posted: Nov 19 2009 at 12:05am
mainsailset wrote:
Terije: I'm positive the Single Payer is gone. |
Well, we need to fix that then. We need to bring back H.R.676 because that's what we want, isn't it?
We can't just sit here and allow the government to give us something we don't want.
By the way, I ran across this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1326256/ - Differences in Management of Older Women Influence Breast Cancer Survival: Results from a Population-Based Database in Sweden
It's relevant to this thread because it's really about this, "Several reports have shown that less aggressive patterns of diagnostic activity and care are provided to elderly breast carcinoma patients. We sought to investigate whether differences in the management of older women with breast cancer are associated with survival.".
The conclusion is that the new government guidelines that this thread is about are wrong.
|
Posted By: mefowler
Date Posted: Nov 19 2009 at 5:43am
|
Hello all,
I have been reading this thread over the last few days and there are some things that I want to point out that are being overlooked. First let me say that I do not agree with the guidelines, but a lot of things are being said that are not true and there is a lot of misinterpretation. First of all, the USPTSF is a VERY conservative government group which has always made recommendations that were much less aggressive (and less expensive) than other groups. For instance, it was not until 2008 that the USPTSF added colonoscopy to their recommended list, but they still list it as equal (at best) to fecal occult blood testing. They are against using PSA or digital rectal exam to check for prostate cancer, saying that the evidence is insufficient. They are against routine screening for thyroid disease, as well as for diabetes unless the person has a sustained blood pressure over 135/85. They evaluate the evidence, and unless there are good studies, preferably randomized, the evidence is considered to be less than ideal. Not that they are wrong, but those kinds of studies are expensive and hard to come by. So remember that ALL the recommendations from this group tend to be very conservative. For a link to their guidelines for various screenings and counseling, the site is here: http://www.ahrq.gov/Clinic/cps3dix.htm - http://www.ahrq.gov/Clinic/cps3dix.htm
It took me a while to find the USPSTF old guidelines (from 2002), but I did, and they are as follows:
The http://www.ahrq.gov/clinic/uspstfix.htm - (USPSTF) recommends screening mammography, with or without clinical breast examination, every 1-2 years for women aged 40 and older.
The USPSTF concludes that the evidence is insufficient to recommend for or against routine clinical breast examination (CBE) alone to screen for breast cancer.
The USPSTF concludes that the evidence is insufficient to recommend for or against teaching or performing routine breast self-examination (BSE).
Now routine mammography screening is not the same as finding a lump. It is just what it says, routine screening of asymptomatic persons. Women who find a lump are NOT asymptomatic. They would still get a mammogram no matter how old (or young) they are. That is the difference between a diagnostic and a screening mammogram. The diagnostic mammogram is evaluating a lump, or something found on another test, or whatever. As some people have also noted, these are guidelines for women considered to be at average risk of breast cancer, not women with a family history or BRCA positivity. They would not apply to women with a family history. Of course, many women who are BRCA-positive did not know until they were diagnosed with breast cancer, and most women with breast cancer do not have a genetic predisposition. But the point is, these guidelines apply to women who are getting routine screening and have no family history of breast or ovarian cancer.
Denise mentioned earlier that “[her] understanding is that the survival rates have increased in large part because mammography catches cancers that would never be found and never cause problems - cancers that have no real potential to do harm and that the body would take care of on its own or live with quietly.” There are many problems with screening tests. One of them is called lead time bias, which means that because a cancer is caught earlier, it looks like people live longer, but really, they just know they have cancer longer. Another common problem with screening is called length time bias. When you screen asymptomatic persons at a set interval, you are more likely to find slow-growing tumors than rapidly growing tumors. Why? Tumors that grow quickly have two characteristics. They are generally asymptomatic for a shorter time than tumors which grow slowly, and, more importantly, rapidly-growing tumors tend to have a worse prognosis than tumors which grow slowly. So what do we tend to find on screening? Mostly, we find tumors which grow more slowly and have a better prognosis. We say those tumors are overrepresented during screening. Since screening tends to find these less aggressive tumors rather than more aggressive tumors, screening can appear to increase survival when in reality it has no effect.
Another issue that I have discussed in the past is that, just as older men are more likely to get prostate cancer as they get older, but that prostate cancer tends to be much less aggressive in older men, the same seems to apply to breast cancer. It is said that all women, if they live long enough, will have occult breast cancer, but will die of other causes. It has already been shown that approximately 100% of men in their nineties are found to have occult prostate cancer on autopsy, although they die of other causes. So if we are doing mammograms of older women (which the USPSTF also recommends discontinuing, BTW), we will frequently find cancers that would never have caused any problems if they had not been detected.
To me, the biggest problem with this situation is that the women at the highest risk of dying of breast cancer are women in their thirties and forties. Breast cancer in young women tends to be more aggressive, whether it is triple negative or not. The same goes for prostate cancer in men, which is why earlier this month, the American Urological Society recommended individualizing prostate screening and decreasing the age of prostate cancer screening in men to 40 from 50 when appropriate. (Of course, the USPSTF does not agree with that either.) But there is tremendous disagreement about screening because so many other benign conditions, such as prostatitis, can cause PSA elevations, and that could lead to more men getting unnecessary biopsies - sound familiar? But back to breast cancer, in addition to the other issues, mammography is not an ideal test for younger women with their denser breasts. MRI is more sensitive, but has more false positives....
It would be interesting to see how many women in this group had their mammograms found on routine screening between the ages of forty and fifty, and how many women between 50 and 75 had a breast cancer found in a mammogram done after one year rather than two years. Oh, and who are the people on the committee? Check it out:
The USPSTF is an independent panel of primary care physicians (my italics) funded and staffed by the HHS Agency for Healthcare Research and Quality (AHRQ).
As my daughters would say, WTF? Maybe they need a few specialists on the panel.
Sorry this is so long. I think I need to get a couple of hours sleep before I go to work. Oh, I forgot to tell you I got my port out yesterday afternoon!!! I am SOOOO happy.
Máire
------------- 53 yo, dx'd 11/08 at 51, 2.9 cm IDC, node-neg, neoadj chemotx with Taxotere/carboplatin q3wks x 6, lumpectomy 4/09, path showed pCR, margin reexcision 5/09, rad'n 6-8/09, intermittent Tarceva, dc'd
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Posted By: 123Donna
Date Posted: Nov 19 2009 at 8:17am
Máire,
You have explained this so eloquently! It really helps me understand the USPTSF better, not that I like or agree with them, and their motives.
Congratulations on your port removal! Hurray
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Houston
Date Posted: Nov 19 2009 at 8:55am
|
Dear Marie,
Thank-you - This is very informative and interesting in the fact the committee appears to find less importance in diagnostic screening overall. After listening to Secretary Sibelius lack of support of the committee findings I was curious as to what the purpose is of the committee if the findings are not supported by HHS.
I went to the HHS website to find the purpose of the committee and found the following:
Impact of the USPSTF Recommendations:
USPSTF recommendations have formed the basis of the clinical standards for many professional societies, health organizations, and medical quality review groups. Previous editions of the Guide to Clinical Preventive Services have been used widely in undergraduate and post-graduate medical and nursing education as a key reference for teaching preventive care.
The work of the USPSTF has helped establish the importance of including prevention in primary health care, ensuring insurance coverage for effective preventive services, and holding providers and health care systems accountable for delivering effective care.
USPSTF recommendations highlight the opportunities for improving delivery of effective services and have helped others in narrowing gaps in the provision of preventive care in different populations.
------------- DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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Posted By: outnumbered
Date Posted: Nov 19 2009 at 11:09am
|
I just saw Blue Cross/Blue Shield's Statement:
Horizon Blue Cross Blue Shield of New Jersey Responds to New Recommendations on Breast Cancer Screening
(Newark, NJ, November 18, 2009) - Horizon Blue Cross Blue Shield of New Jersey issued a statement today in response to new guidelines of the U.S.
Preventive Services Task Force on breast cancer screening published Monday in the Annals of Internal Medicine. Dr. Richard Popiel, Vice President and Chief Medical Officer of Horizon BCBSNJ, issued the following statement:
"Horizon Blue Cross Blue Shield of New Jersey strongly supports and has for many years advocated mammography as the best screening tool for the early detection of breast cancer in order to keep women healthy and save lives.
Our current medical policy for breast cancer screening will not change in light of yesterday's announcement of new guidelines from the U.S. Preventive Services Task Force. We will evaluate these new recommendations and seek out expert input before making any decision to change our current medical policy. We will continue to work with organizations we have supported over the years, including the American Cancer Society and Susan G. Komen for the Cure, to ensure our medical policy provides breast cancer screening coverage adequate to keep women healthy."
Horizon BCBSNJ's medical policy currently provides coverage for:
. One baseline mammogram examination for women between 35-39 years of age; . A mammogram examination every year for women 40 years of age and older; and . In the case of a woman who is under 40 years of age and has a family history of breast cancer or other breast cancer risk factors, a mammogram examination as such age and intervals as the physician deems medically necessary.
I have not been able to find anything from Aetna, however, the old guidelines were based on recommendations from ACS, The American College of Radiology, and the American College of Obstetricians and Gynecologists. None of those 3 support the new guidelines. As a matter of fact, the ACR VERY STONGLY objects. Here is their statement:
USPSTF Mammography Recommendations Will Result in Countless Unnecessary Breast Cancer Deaths Each Year
Nov. 16, 2009 — If cost-cutting U.S. Preventive Services Task Force (USPSTF) mammography recommendations are adopted as policy, two decades of decline in breast cancer mortality could be reversed and countless American women may die needlessly from breast cancer each year. The recommendations ─ created by a federal government-funded committee with no medical imaging representation ─ would advise against regular mammography screening for women 40-49 years of age, provide mammograms only every other year for women between 50 and 74, and stop all breast cancer screening in women over 74.
“These unfounded USPSTF recommendations ignore the valid scientific data and place a great many women at risk of dying unnecessarily from a disease that we have made significant headway against over the past 20 years. Mammography is not a perfect test, but it has unquestionably been shown to save lives ─ including in women aged 40-49. These new recommendations seem to reflect a conscious decision to ration care. If Medicare and private insurers adopt these incredibly flawed USPSTF recommendations as a rationale for refusing women coverage of these life-saving exams, it could have deadly effects for American women,” said Carol H. Lee, M.D., chair of the American College of Radiology Breast Imaging Commission.
Since the onset of regular mammography screening in 1990, the mortality rate from breast cancer, which had been unchanged for the preceding 50 years, has decreased by 30 percent. Ignoring direct scientific evidence from large clinical trials, the USPSTF based their recommendations to reduce breast cancer screening on conflicting computer models and the unsupported and discredited idea that the parameters of mammography screening change abruptly at age 50. In truth, there are no data to support this premise.
“The USPSTF claims that the “harms” of mammography, including discomfort of the exam, anxiety over positive results, and possibility of overtreatment because medical science cannot distinguish which cancers will become deadly most quickly ─ outweigh the greatly decreased number of deaths each year resulting from breast cancer screening. Without doubt, the possibility of having one’s life saved through early detection far outweighs any of these concerns. Their premise is tragically incorrect and will result in many needless deaths if their recommendations are adopted by the American public.” said Lee.
"The USPSTF recommendations are a step backward and represent a significant harm to women's health. To tell women they should not get regular mammograms starting at 40 when this approach has overwhelmingly been shown to save lives is shocking. At least 40 percent of the patient years of life saved by mammographic screening are of women aged 40-49. These recommendations are inconsistent with current science and apparently have been developed in an attempt to reduce costs. Unfortunately, many women may pay for this unsound approach with their lives," said W. Phil Evans, M.D., FACR, president of the Society of Breast Imaging (SBI).
The USPSTF is an independent panel of primary care physicians funded and staffed by the HHS Agency for Healthcare Research and Quality (AHRQ). The Medicare Improvements for Patients and Providers Act of 2008 (MIPPA) gave HHS the authority to consider USPSTF recommendations in Medicare coverage determinations for additional preventive services. Recently, Congress has expressed their desire to broaden this authority and enhance the role of the USPSTF in terms of its impact on coverage for existing services. Additionally, private insurers may incorporate the AHRQ-funded USPSTF recommendations as a cost-savings measure.
“I am deeply concerned about the actions of the USPSTF in severely limiting screening for breast cancer. These recommendations, in combination with recent CMS imaging cuts, jeopardize access to both long proven and cutting-edge diagnostic imaging technologies. Government policy makers need to consider the consequences of such decisions. I can’t help but think that we are moving toward a new health care rationing policy that will turn back the clock on medicine for decades and needlessly reverse advances in cancer detection that have saved countless lives,” said James H. Thrall, M.D., FACR, chair of the American College of Radiology Board of Chancellors
I feel alot better now. I feel optomistic that nothing will change. The supporters of the new guidelines are in minority, and I think our voices and the voices of the medical experts (not primary doctors) will be heard louder than the task force, Susan Love, and Fran Visco. My hope and expectation is that the majority will still have some say over what hapens with federal programs. I could be naive but I am unwilling to partake in a political debate. Too stressful.
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: mainsailset
Date Posted: Nov 19 2009 at 11:29am
Cong. Debbie Wasserman-Schultz on CSPAN this morning taking calls and talking about this. I believe it is up as a video at the CSPAN website. That is one power voice for women with breast cancer! Since she found her bc in her early 40's and is BRCA2 positive she's been on the frontline of care.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Nov 19 2009 at 12:20pm
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Dear Mainy,
maybe that's why Debbie calls it The EARLY act rather than the LATER act.. 
http://wassermanschultz.house.gov/earlyact/index.shtml - http://wassermanschultz.house.gov/earlyact/index.shtml
all the best,
Steve
for now, I am a lot more relaxed..public support, for leaving mammogram policy as is, has been overwhelmingly positive..as it should be...
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: 123Donna
Date Posted: Nov 19 2009 at 10:38pm
I just received an interesting email from Dr. Susan Love (Army of Women) after I wrote them asking them to delete my account (unsubscribe) because I no longer wanted to be associated with her program after her support for the new guidelines. It's a very long winded email to all that have recently contacted her and Army of Women and tries to explain her much scrutinized public comments. My take on it? She must have received a landslide of negative comments. A lot of back peddling and maybe worried about losing support for her foundation and maybe the Avon grant funding it.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: unklez
Date Posted: Nov 19 2009 at 11:03pm
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Good job Donna.
------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Posted By: gpawelski
Date Posted: Nov 20 2009 at 8:46am
The American Cancer Society avoids looking clearly at the data and continues to recommend screening for women under fifty. The ACS doesn't want to enrage its donor base and Congress didn't want to upset constituents and breast cancer specialists have faith in the procedure. I'm sure some breast cancer organizations are also organizing their protest.
In 2002, the Lancet published the Swedish meta-analysis, analyzing and updating the half-dozen Swedish mammography studies that told us nearly all of what we knew about the value of mammography. The Swedish mammography trials, which have monitored some 265,000 women for nearly 30 years, are accepted by physicians and researchers worldwide as the most authoritative. Their conclusion, there was virtually no benefit from mammograms for women under 55.
Dr. Otis Brawley, the cancer society's chief medical officer, was quoted in the New York Times admitting "that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated." Brawley expressed the same view at a cancer symposium in Milan in 2003. Following the USPSTF report's release, however, Brawley appeared to change direction, telling the Times that the cancer society had concluded that the benefits of annual mammograms beginning at 40 "outweighed the risks" and that the ACS was sticking by its earlier advice.
One of Brawley's colleagues said, "He's trying to save his job. He was broiled at home for the interview in which he said that the medical establishment was 'overselling' screening."
Dr. Donald Berry, head of biostatistics at the M.D. Anderson Cancer Center, points out that if the Swedish update is read carefully, the benefit for women 40-50 is really only 9 percent, which is not statistically significant, meaning it could represent the play of chance and not a real advantage. What Brawley failed to mention is that the numbers the news media are flinging around are the relative benefit. Utterly obscured is the number that really matters, the absolute benefit.
And now, Health and Human Services Secretary Kathleen Sebelius told American women that they have nothing to learn from the science that led to the USPSTF guidelines on mammography. I guess the President didn't want to upset his constituents.
It is important to note that companies like General Electric and DuPont, both which manufacture mammography equipment, are large donors to organizations that are against any change in the recommendations.
I know this is controversial and emotional, but the facts are that most women under age 50 will not benefit from screening mammography and women over 50 need it only every 2 years. Doesn’t mammography catch breast cancer early and save lives, regardless of age? The simple answer is - not really.
The data on whether mammography saves lives is very limited. All the studies that had been published over the years were pretty clear that it was effective in older women, but for those under 50, the benefit was awfully small.
Why was that? Doesn’t it make sense that if you catch the cancer early, you can save lives? The problem with this is that the biology of cancer isn’t that simple. Most breast cancers found on mammography are slow growing. That is the problem. The slow-growing ones are picked up by mammography – these are not likely to be killers - and the more aggressive cancers grow too fast to be found early.
That is why we can’t look at how early we can detect the cancers, but whether this detection saves lives. There is little proof that mammography in women under 50 saved very many lives. Why not? One reason is that a younger woman’s breasts are so dense that cancers don’t show up in the mammogram.
Another, perhaps more important reason is that breast cancer in these women is uncommon. There are exceptions of course. Women with a strong family history or other risk factors should be screened early. But, each year, for every 100,000 women under age 50, only 40 cancers are diagnosed and only 7 women die of breast cancer.
On the other hand, nearly 4,000 of these women will have abnormal mammograms because of some other reason like scarring or cysts and they will get more mammograms (and more radiation to the breast) and often, an unnecessary biopsy. That is why the guideline writers felt that even though an occasional life was saved by the procedure, it wouldn’t be worth it for all the side effects the other women would experience.
As for the women over the age of 50, research data finds that every two years seems to be enough.
Likewise, the American Cancer Society also avoids looking clearly at the data and continues to recommend screening for younger women. And this morning’s paper carried lots of outrage from breast cancer specialists and other docs who are committed to screening younger women. Some of the reasons for this are political and financial.
The ACS doesn’t want to enrage its donor base, Congress didn’t want to upset constituents and breast cancer specialists have faith in the procedure. I’m sure all the pink breast cancer organizations are also organizing their protest.
Why this emotion and outrage? I think because we feel helpless when we see women die of breast cancer, sometimes while still young. Indeed, deaths in these young women hit us hard. So we want to do something and the only tool is mammography.
But mammography is not the answer for these women and the unfortunate side effect of this delusion is that we avoid the hard choices like healthy life styles and avoiding cancer-causing drugs such as hormone-replacement treatment.
------------- Gregory D. Pawelski
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Posted By: SagePatientAdvocates
Date Posted: Nov 20 2009 at 11:55am
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Dear Gregory,
I would like to respectfully differ.
Sweden is not the United States. I am not saying the study wasn't carefully done etc etc. If you are correct and Dr. Berry says the benefit is only 9% and is not statistically significant my question is "what value do we put on a woman's life saved by early detection via a mammogram or BSE?" in my view, even one life saved is significant and from the anecdotal stories I have heard from many, many women both mammograms and Breast Self Exams (BSE) have saved lives. If you are the woman saved by a mammogram or a BSE it is significant, in my view. and I believe that many, many lives have been saved not just my hypothetical "one" above.
I have several friends in Europe and when I shared the facts about BRCA and TNBC with them and the fact that my daughter had a Prophylactic Bi-lateral Mastectomy (PBM) after her quadrantectomy they were appalled._"We would never do that in our country. How could you let her do that?" My point is that a woman in Sweden after having a mammogram that shows cancer may have a lumpectomy only due to cultural reasons and more lives may have been saved with mastectomies.
The following is from a study on PBM....and I know that is not on point with the discussion here but in my view it is related because it is my understanding that mastectomies in general, in Europe, are not viewed as they are here...and it may make a difference, statistically.
CONCLUSION: Age, type of initial breast cancer surgery, and prophylactic oophorectomy are all predictive of prophylactic contralateral mastectomy in women with breast cancer and a BRCA mutation. The acceptance of contralateral preventive mastectomy was much higher in North America than in Europe.
http://www.citeulike.org/user/aeisen/article/6014039 - http://www.citeulike.org/user/aeisen/article/6014039
NBCC bases their position paper on BSE (they don't believe they are that helpful) on two studies..one done in China by Fred Hutchinson and one done in Russia. Again, China and Russia have different cultures compared to the U.S. I asked someone from NBCC why there is not a large randomized study in the U.S. on BSE and was told "oh, that would be too expensive to do"..can't argue with that statement but until one is done (if it ever is) I think it is unwise to base U.S. policy on studies based in other lands who have totally different cultures. I don't mean that in a racist, negative way.
A dear friend of mine gives clinical exams all day long and shows women how to do BSEs. She has told me time and time again how important it is for "women to become familiar with their breast tissue." Again perhaps, statistically not enough lives are being saved BUT what value do we put on the life that is saved?
and let's please continue to be respectful to each other..I disagree with what you wrote and I am sure that will not change your opinion...which is fine...but let's make sure this is a peaceful discussion, please, if you care to respond.
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: SagePatientAdvocates
Date Posted: Nov 20 2009 at 12:09pm
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p.s. you wrote.. "Another, perhaps more important reason is that breast cancer in these women is uncommon. There are exceptions of course. Women with a strong family history or other risk factors should be screened early. But, each year, for every 100,000 women under age 50, only 40 cancers are diagnosed and only 7 women die of breast cancer."
what study is that from? please give me the specific reference...The figures you cite are certainly not from the TNBC community. You are writing to a forum that includes women who may be at very high risk and even the "commission" does not want to change surveillance for this group. Perhaps you are writing to the wrong audience?
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: 123Donna
Date Posted: Nov 20 2009 at 1:32pm
gpawelski wrote:
Why this emotion and outrage? I think because we feel helpless when we see women die of breast cancer, sometimes while still young. Indeed, deaths in these young women hit us hard. So we want to do something and the only tool is mammography.
But mammography is not the answer for these women and the unfortunate side effect of this delusion is that we avoid the hard choices like healthy life styles and avoiding cancer-causing drugs such as hormone-replacement treatment. |
I'm sorry, but I respectfully disagree with your opinion. Until we have other screening options available for breast cancer, mammograms and self-breast examinations (SBE) must continue. My breast cancer was identified through my yearly mammogram. Yes, I may be the 1 in 1,900 people diagnosed with bc through a mammogram, but you can be sure I thank God everyday that I had the choice. Based on the recommended guidelines, I wouldn't qualify for a mammogram. I was under 50, no family history or risk factors, ate a healthy diet, exercised, never smoked, did not use birth control or hrt, had my children in my 20's, breast fed, etc. I sometimes wonder if I was more diligent about SBE, could I have found it sooner?
TNBC is too agressive of a disease. It affects too many young women.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: outnumbered
Date Posted: Nov 20 2009 at 2:25pm
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But mammography is not the answer for these women and the unfortunate side effect of this delusion is that we avoid the hard choices like healthy life styles and avoiding cancer-causing drugs such as hormone-replacement treatment.
I take offense to that statement as if we are to blame for our cancer. I was 40 when I was diagnosed, thin and healthy. No family history what-so-ever. I had all three of my children before the age of thirty, and nursed all of them. I inherited the BRCA gene. Many ladies here do not have the BRCA gene, however there are family links that have not yet been discovered. Others here randomly got this thing. A HUGE percentage of us are in the under 50 group. Many, many of us have had our lives saved by mammograms. We are not delusional, nor are we fighting for our lives because of poor life choices.
With all due respect, I am deeply sorry you have experienced loss in your life, and I am deeply sorry you feel your family was mistreated by the medical community. This, however is not the place to park your soap box.
------------- ~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: unklez
Date Posted: Nov 20 2009 at 3:11pm
gpawelski wrote:
The American Cancer Society avoids looking clearly at the data and continues to recommend screening for women under fifty. The ACS doesn't want to enrage its donor base and Congress didn't want to upset constituents and breast cancer specialists have faith in the procedure. I'm sure some breast cancer organizations are also organizing their protest.
In 2002, the Lancet published the Swedish meta-analysis, analyzing and updating the half-dozen Swedish mammography studies that told us nearly all of what we knew about the value of mammography. The Swedish mammography trials, which have monitored some 265,000 women for nearly 30 years, are accepted by physicians and researchers worldwide as the most authoritative. Their conclusion, there was virtually no benefit from mammograms for women under 55........ |
Your whole premise is that the numbers given by these studies are reliable. Have they been proven by large scale multi-center, multi-year, randomized, double blind, placebo controlled studies? If not, forget it.
------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Posted By: mainsailset
Date Posted: Nov 20 2009 at 6:03pm
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As many have pointed out on MSM, the set of statistics that were on the table for this panel were the same set as were reviewed several years ago. Each separate panel came to differing conclusions.
To be snarky, one CNN panel member said they had looked into the makeup of the panel and there were members that were affiliated in one way or another with the Health Insurance arm however there were no oncologists on the panel.
I will not accept a premise that denies that saving even one woman's life is not worth the anxiety of thousands because of false positives or over treatment in response to early detection by self exam or a mammo. After all, who's to choose which woman it is that develops breast cancer and unknowingly lives with it until it is too late to treat?
I join those who are disappointed that mammos aren't more accurate. And as many women have pointed out here, the technicians who've performed our mammos, ultrasounds & scans sometimes have responded to our tumors with a 'never mind, it looks benign' and only through the stalwart insistence of our sisters have they been able to push through the fog and get a biopsy.
I wish I could tell the women out there young and younger who live healthy lifestyles, are blissfully ignorant of genetics & assume that this panel just assured them that somehow their chances of getting breast cancer early are no longer something they need to worry about that now is not the time to give in, now is the time to demand their care.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Nov 20 2009 at 6:28pm
mainsailset wrote:
I wish I could tell the women out there young and younger who live healthy lifestyles, are blissfully ignorant of genetics & assume that this panel just assured them that somehow their chances of getting breast cancer early are no longer something they need to worry about that now is not the time to give in, now is the time to demand their care.
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I can't agree with you more. I want to get the word out to all the women in their 20s and 30s that are too young for a mammogram, to be diligent in monthly self breast examinations. It's the best chance of catching anything suspicious early. If they find a suspicious lump, I'd rather they bring it to their doctor's attention even if it turns out to be nothing. If it doesn't go away or gets bigger, demand for more testing to make sure it's not cancerous. Saving even one woman's life is worth it!
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Terje
Date Posted: Nov 20 2009 at 8:42pm
gpawelski wrote:
But mammography is not the answer for these women and the unfortunate side effect of this delusion is that we avoid the hard choices like healthy life styles and avoiding cancer-causing drugs such as hormone-replacement treatment. |
I really wish that a healthy lifestyle could prevent cancer but the sad truth is, it doesn't.
I had a grandfather who smoked all his life and lived a very healthy life til he was 87. He never had any lung problems or cancer.
I had a father who ate healthy and exercised all his life. He was diagnosed with colon cancer at 37 and died of it 7 years later. Sometimes he weighed 190 lbs, and sometimes he weighed 95 lbs. He had 2 months left to live about 5 or 6 times during those 7 years. http://www.facebook.com/photo.php?pid=1826671&l=bae593608e&id=675058064 - Here's a picture about a year before he died.
It has nothing to do with how healthy your lifestyle is or not. It has to do with your genes and chance.
BTW, What are the actual numbers? 100,000 people having mammograms every year to save 33 lives does seem a bit excessive (that's 0.033%). How much money is that? What if all that money were spent on developing a cancer vaccine instead? And who's to say that those 33 would have died if their cancer was detected later and the lives of the 7 who died would have been saved if their cancer had been detected earlier? Could it be that the type of cancer is more important than when it's detected? I don't know, but the last article I linked to below makes me wonder.
This is an article where they took mice that have been genetically engineered to develop cancer, then they were able to immunize them against that cancer. The article says, "When this vector was injected into hMUC-1.Tg mice, which are transgenic for the hMUC-1 antigen, the growth of syngeneic hMUC-1-positive LL1/LL2hMUC-1 mouse cancer cells was suppressed in 100% of the injected animals."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC299915/ - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC299915/ (2003)
This is an article about a phase 3 immunotherapy study in early stage breast cancer patients. The results, after 5.5 to 8.5 years 4/15 of the patients who received the placebo had a recurrence and 0/16 of those who got the vaccine had a recurrence.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1557739/ - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1557739/ (2006)
After more than 5.5 years had elapsed since the last patient began treatment (8.5 years from the start of treatment of the first patient), the recurrence rate in patients receiving the placebo was 27% (4/15; the expected rate of recurrence in stage II breast cancer); those receiving immunotherapy had no recurrences (0/16), and this finding was statistically significant (P = 0.0292). |
This article is very clear and simple to read and explains everything very well. The title is, "Premalignant Lesions as Targets for Cancer Vaccines".
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2194136/ - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2194136/ (2003)
It looks like we're incredibly close to a cancer vaccine. I really think everyone here should read the last article. Last night I found about 20 articles like these and I plan to read them all but it will take some time, especially since I'm going to have to wikipedia everything I don't understand.
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Posted By: kirby
Date Posted: Nov 21 2009 at 1:24am
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Terje,
I agree with you wholeheartedly about cancer not having to do with lifestyle.
I tend to be skeptical of some studies. Be sure to read how these studies were done, how many people in the study [ I don't consider a study of 15 to be a very accurate cross section of society], how long etc.
Are you in San Jose, Ca.?
------------- kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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Posted By: Terje
Date Posted: Nov 21 2009 at 1:31am
Alright so I went ahead and looked up the numbers.
This website says that by age 50, 1 out of 37 women will develop breast cancer.
http://www.imaginis.com/breasthealth/statistics.asp - http://www.imaginis.com/breasthealth/statistics.asp
This website says that the cost of a mammogram (without insurance) is between $80 and $120.
http://www.costhelper.com/cost/health/mammogram.html - http://www.costhelper.com/cost/health/mammogram.html
If we go with the $120 number the cost of finding each occurrence of breast cancer before age 40 using the current annual exams is 37 women X $120 X 10 years = $44,000
If we were to do annual exams from age 30 to age 40 as well, the cost of detecting each occurrence would be 68 women X $120 X 10 = $81,600
I think it's worth it to start with annual exams at age 30. $120/year isn't that much to pay. That's $10/month. I pay $10 for lunch.
My next question is, how much is the average cost to treat someone who had developed breast cancer, and how much does that cost depend on how early it was detected.
It seems to me that the cost would go up the longer you wait, and therefor we might actually save money if we spent $240/year and had mammograms every 6 months starting at age 30.
What makes me think this is the section on the top of page 2 called, "Staging and Survival Rates".
http://www.imaginis.com/breasthealth/statistics2.asp - http://www.imaginis.com/breasthealth/statistics2.asp
I guess the other information needed for my calculation is, "How fast does the average cancer take to progress through the stages if left unchecked."
Like does it take 3 months to go from stage O to stage I, then another 3 to progress to stage IIA? Or is it 6 months?
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Posted By: Terje
Date Posted: Nov 21 2009 at 1:40am
kirby wrote:
I tend to be skeptical of some studies. |
Me too. Well, clinical studies are good because they're regulated in some way and if someone screws up they get a bad reputation that could effect their careers.
Studies done for supplements, however aren't regulated. It's perfectly legal to pay some company to do a study for you with a non-disclosure agreement, then if the study doesn't show what you want it to show, you can hide it and nobody will ever find out.
You can pay for 100 such studies with 20 subjects each and then publish the 2 that just happen to show that powdered mango extract sprinkled on your food at every meal reduces cholesterol and then sell the crap while saying, "studies show ...". I prefer to eat a mango with every meal (it's cheaper).
kirby wrote:
Are you in San Jose, Ca.? |
Well, right now I'm in Sunnyvale, but I'll be heading to San Jose in a few.
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Posted By: gpawelski
Date Posted: Nov 21 2009 at 9:27am
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The news about mammograms is not brand new information based on one study that just came out. The recommendations that the Preventive Services Task Force (PSTF) released is based on research that experts have known about for some time.
Dr. Herman Kattlove, a retired medical oncologist did research on mammograms in the early 1990's. For seven years, until his retirement in 2006, Kattlove had served as a medical editor for the American Cancer Society where he had helped develop much of the information about specific cancers that is posted on the society's website.
On his own personal cancer blog, Kattlove wrote, “Many years ago, the National Cancer Institute (NCI) tried to convince us all to not screen women younger than 50 and were given such a tongue lashing by Congress that they went home, licking their wounds, and withdrew their recommendation.”
Of course, Congress should not have become involved in telling the NCI what information it should make available to the public. Few Congressmen are either M.D.s or scientists trained to analyze and critique medical research. But this illustrates just how politically charged the question of diagnostic testing has become, especially when companies like GE that are making large profits on the sale of diagnostic testing equipment, and their lobbyists are helping to finance Congressional campaigns.
For decades doctors have urged patients to undergo mammograms because they sincerely believed that mammograms saved many lives. They, too, were not receiving all of the information they needed about the risks. Powerful forces stood in the way of widespread dissemination while millions of dollars were poured into the Mammogram campaign.
Kattlove goes on to say, “Likewise, the American Cancer Society also avoids looking clearly at the data and continues to recommend screening for younger women. And the morning’s paper carried lots of outrage from breast cancer specialists and other docs who are committed to screening younger women.
Some of the reasons for this are political and financial. The ACS doesn’t want to enrage its donor base, Congress didn’t want to upset constituents and breast cancer specialists have faith in the procedure. I’m sure all the pink breast cancer organizations are also organizing their protest.
Why this emotion and outrage? I think because we feel helpless when we see women die of breast cancer, sometimes while still young. Indeed, deaths in these young women hit us hard. So we want to do something and our only tool is mammography.
“But mammography is not the answer for these women.” As Kattlove points out in his post, when young women die of breast cancer they are usually killed by very fast-growing aggressive cancers that grow too quickly to be caught by early detection. The tumors crop up, and spread in between annual mammograms. Kattlove continues: “The unfortunate side effect of this delusion [that screening and early detection is the answer] is that we avoid the hard choices like healthy life styles and avoiding cancer-causing drugs such as hormone-replacement treatment.
I would add that while I applaud the PSTF for bringing this research to our attention, I wish that they had done this two or three years ago. From a political point of view, the timing is unfortunate because inevitably, those who oppose health care reform will exploit this report to suggest that, under reform, the Government will use “comparative effectiveness research” to deny necessary care—and as a result patients will die.
In fact, health care reformers, the government and Medicare understand that, after thirty years of telling women that they must have annual mammograms, we cannot turn on a dime and expect them to suddenly absorb the information that for most average-risk women under 50, mammograms pose more risks than benefits.
No one is going to stop covering mammograms. But responsible physicians will begin giving patients more information about what the medical research shows, including the fact that for most women, the danger of undergoing unnecessary radiation, or an unneeded mastectomy or lumpectomy, far exceeds the likelihood that a mammogram will save their lives.
Moreover, it is important to remember that the “comparative effectiveness information” that the government plans to generate will serve to create guidelines—not “rules”—for doctors. In the U.K., doctors use such guidelines about 88 percent of the time, which seems appropriate, giving how much variation there can be in individual cases.
Finally, under reform it is extremely unlikely that insurers (including the public plan) will stop covering treatments and tests (including PSA tests), that have been in use for a long time. More likely, they will lift co-pays and lower reimbursements for procedures that are less effective, while lowering co-pays and lifting reimbursements for procedures that the medical evidence shows are more effective.
In this case, unfortunately, we don’t yet have a good alternative to mammograms, a further reason why insurers will not suddenly stop covering the tests.
------------- Gregory D. Pawelski
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Posted By: gpawelski
Date Posted: Nov 21 2009 at 9:30am
According to the Atlantic's John Crewdson, the only American reporter at the Stockholm news conference in 2002, on The Lancet publication of the Swedish meta-analysis, analyzing and updating the half-dozen Swedish mammography studies that told us nearly all of what we knew about the value of mammography, last month, Dr. Otis Brawley, the cancer society's chief medical officer, was quoted in the New York Time admitting "that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated."
Crewdson wasn't surprised by Brawley's statement, since he had expressed the same view to him when they met at a cancer symposium in Milan in 2003.
Following the task force report's release, however, Brawley appeared to change direction, telling the Times that the cancer society had concluded that the benefits of annual mammograms beginning at 40 "outweighed the risks" and that the ACS was sticking by its earlier advice. One of Brawley's colleagues said, "He's trying to save his job. He was broiled at home for the interview in which he said that the medical establishment was 'overselling' screening."
Dr. Donald Berry, head of biostatistics at the M.D. Anderson Cancer Center, points out that if the Swedish update is read carefully, the benefit for women 40-50 is really only 9 percent, which is not statistically significant, meaning it could represent the play of chance and not a real advantage. What Brawley failed to mention is that the numbers the news media are flinging around are the relative benefit. Utterly obscured is the number that really matters, the absolute benefit.
------------- Gregory D. Pawelski
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