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123Donna
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Posted: Nov 17 2009 at 4:37pm |
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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
Edited by 123Donna - Nov 17 2009 at 4:37pm
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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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outnumbered
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Posted: Nov 17 2009 at 5:09pm |
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.
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~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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123Donna
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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.[1]
The American Cancer Society, however, has stated that it will continue
to recommend annual mammograms starting at the age of 40.[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: [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.
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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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mainsailset
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Posted: Nov 17 2009 at 6:14pm |
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.
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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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outnumbered
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Posted: Nov 17 2009 at 6:30pm |
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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?
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~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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123Donna
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Posted: Nov 17 2009 at 6:39pm |
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Sara,
I agree. Is that not "clear evidence"?
Donna
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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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mainsailset
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Posted: Nov 17 2009 at 6:50pm |
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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.
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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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dmwolf
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Posted: Nov 17 2009 at 6:57pm |
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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.
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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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Houston
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Posted: Nov 17 2009 at 7:19pm |
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I saw Dr. Susan Love this morning on GMA and I was questioning her motivations. Does she have political aspirations?
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DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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Terje
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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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SagePatientAdvocates
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Posted: Nov 17 2009 at 9:26pm |
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
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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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kirby
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Posted: Nov 17 2009 at 9:38pm |
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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.
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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mainsailset
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Posted: Nov 17 2009 at 10:17pm |
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.
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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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cduvall1
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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.
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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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SagePatientAdvocates
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Posted: Nov 18 2009 at 8:28am |
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.
.................
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
Edited by steve - Nov 18 2009 at 8:31am
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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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sharon in Mich
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Posted: Nov 18 2009 at 9:22am |
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
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dx 03/05 tn with lymph involvement, dd neo adjuvant AC+taxol, bil 08/05, 38 rads, BRCA-, NED.
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Houston
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Posted: Nov 18 2009 at 9:32am |
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.
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DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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SagePatientAdvocates
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Posted: Nov 18 2009 at 9:43am |
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
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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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Houston
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Posted: Nov 18 2009 at 10:23am |
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
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DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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SagePatientAdvocates
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Posted: Nov 18 2009 at 10:57am |
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
Edited by steve - Nov 18 2009 at 10:58am
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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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