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SagePatientAdvocates
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Posted: Nov 17 2009 at 9:59am |
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 atwww.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.”
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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
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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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SagePatientAdvocates
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Posted: Nov 17 2009 at 10:26am |
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).
Edited by steve - Nov 17 2009 at 10:27am
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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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123Donna
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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
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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 10:42am |
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!!!!
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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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mainsailset
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Posted: Nov 17 2009 at 10:51am |
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)
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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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SagePatientAdvocates
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Posted: Nov 17 2009 at 11:16am |
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
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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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outnumbered
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Posted: Nov 17 2009 at 11:32am |
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!
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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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mainsailset
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Posted: Nov 17 2009 at 11:37am |
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**
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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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SagePatientAdvocates
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Posted: Nov 17 2009 at 11:42am |
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
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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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krisa
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Posted: Nov 17 2009 at 11:53am |
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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mainsailset
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Posted: Nov 17 2009 at 11:57am |
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.
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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 12:06pm |
We are just a statistic... It sux if you fall on the wrong side, oh well....Que Sera Sera...
GRRR
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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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mainsailset
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Posted: Nov 17 2009 at 12:09pm |
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Watching Dr. Susan Love on MSNBC debating man from Cancer Org and she is coming across as someone I would NEVER support. Nada.
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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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Autumn10182001
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Posted: Nov 17 2009 at 1:22pm |
Am I reading this wrong.. is the NBCC agreeing with the new guidelines..
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Dear Friend,
I want to share with you the National Breast Cancer Coalition’s 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 New York Times and the 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 myths and truths about breast cancer, specifically those related to mammography and 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. 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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Darla
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Posted: Nov 17 2009 at 1:33pm |
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Autumn,
I think you interpreted NBCC's position correctly. BCA supports it as well.
Darla
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123Donna
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Posted: Nov 17 2009 at 3:15pm |
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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
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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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DeeDee
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Posted: Nov 17 2009 at 3:25pm |
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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.
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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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outnumbered
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Posted: Nov 17 2009 at 3:30pm |
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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....
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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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CarynRose
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Posted: Nov 17 2009 at 3:39pm |
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
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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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SagePatientAdvocates
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Posted: Nov 17 2009 at 4:07pm |
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.
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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
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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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