No Benefit from Double Mastectomy

cp418

http://jama.jamanetwork.com/article.aspx?articleid=1900512

Use of and Mortality After Bilateral Mastectomy Compared With Other Surgical Treatments for Breast Cancer in California, 1998-2011

 

wallycat

I wonder if they checked anxiety meds and cost of double and triple checking, never mind the side effects some women experience from radiation.....sigh.  

"They" finally figured out breast cancer is not one disease; maybe "they" can accept that we all process our care needs differently....just sayin'

cp418

I think "some" doctors would rather give the patient a script for anti-anxiety medication and show them the door.  The follow-up for PTSD is still minimized IMHO for the psychological toll of frequent exams, tests, office visits.  Then the flip side is minimal to no follow up monitoring.....

Blessings2011

I completely agree with wallycat!

My IDC was small and caught early. Because it was multifocal (along with DCIS) in the left breast, lumpectomy was not an option.

My Radiologist could not assure me 100% that there was nothing to be found in my huge, droopy, very dense, fibrocystic right breast. 

BMX was the absolute right choice for me. Yes, there are still those who think that BMX is a cure-all for BC. However, I knew that my surgical choice would not affect my risk of recurrence, or need for chemo or rads. That would depend on my final path report.

But I did know that it would eliminate the annual fear of mammogram results on the right, and trips out of town for breast MRIs. 

DiveCat

As blessings pointed out, a BMX does not affect risk of distant recurrence, chemo, and rads may still be recommended depending on margins. But there are other reasons women do choose BMX (meaning a prophylactic mx of the contralateral breast) beside these issues which has been pointed out; women should make an informed decision (i.e. be aware that it does not affect recurrence, and has minimal impact on mortality) but they should also be respected by others, including their medical providers, for making whatever decision is right for them once they have that information. That may be a BMX even if it would not reduce mortality, etc. Scanxiety, PTSD issues, desire for both breasts to be removed or reconstructed for symmetry, etc may all be reasons women may choose BMX over UMX (or LX). It may not be what someone else would choose...but that does not make it wrong for the invididual. It used to be doctors ordered women that they had to get a Halsted or even more horrribly disfiguring radical procedures (or worse, women did not know until they woke up from a biopsy what they may end up with as they did the biopsy/sx all in one go), I don't want to see a shift entirely in the other direction where women are told they have no choice but a UMX or LX. 

Also, it should be noted that these findings would not apply to the BRCA+ population, and perhaps (though there aren't studies on this) other high risk populations. In the BRCA+ population, BMX does actually does reduce mortality from breast cancer significantly. This however, is not because it affects distant recurrence, but because those who are BRCA+ are at a high risk of a second primary, including a contralateral breast cancer, and removing both breasts as part of their treatment for a unilateral cancer reduces that risk.  At 20 years out from diagnosis, the survival rate for BRCA+ women who had a double mastectomy was 88% compared with 66% for those who had just the affected breast
removed.

http://www.medscape.com/viewarticle/820551

BayouBabe

Thank you divecat!  That is what is making me so very furious about so many of the articles/news reports about this - so many of them do NOT talk about the BRCA factor.  Bad reporting!!!  It should be mentioned in EVERY article, that for some of us (BRCA and others) there is a benefit.  We are not a "one size fits all" treatment.  Ugh!

Colt45

For the love of Pete... the INDIVIDUAL PATIENT must be treated.  Anyone saying that BMX doesn't affect mortality isn't looking at the INDIVIDUAL.  Across the board, the value  of BMX may not be statistically significant-----but to certain INDIVIDUALS, it could make all the difference in the world.

A glass of water may not affect mortality across the board----but if you're one of those who is dying of thirst, it might actually be what saves YOU, the INDIVIDUAL, in your specific case.

Geez Louise.  

BayouBabe

"However, another study released this week in the Journal of the American Medical Association found that having a preventative double mastectomy — like Jolie did — does not boost survival rates when compared to removing only the tumors embedded in breast tissue.  In other words, though women may feel empowered by taking control of their health, it's a false positive."  Here is a quote from Beth Stebner of the New York Daily News.  If you google her article, you can access her email.  I encourage BRCA women and others to email her and tell her what horrible reporting this is and what a disservice she is doing to all BRCA women, including Jolie, that have made this choice.  This bothers me immensely!!This study does not apply to BRCA women and men!

cp418

Here is another JAMA article discussing BRCA surgeries.  http://jama.jamanetwork.com/article.aspx?articleid=186510

It appears these articles are written in a narrow view for the study(s) they are discussing - certainly not as individual patients but as statistics.

DiveCat

Bayou Babe, 

Yikes, that is bad reporting by Beth Stebner, especially as she is directly referencing AJ's entirely prophylactic mastectomy which is an entirely different animal. In BRCA+ women, an entirely prophylactic BMX reduces risk of breast cancer by over 90% (some actually studies say 95%). Obviously that has an incredible effect on mortality from BC.

ETA: I contaced Beth to state that while it may not have been her intent, her article which starts off with discussing AJ reducing her risk with a PBMX, then following with a reference to the JAMA article to say that women treating BC with a BMX does not reduce mortality is misleading in respect to BRCA+ women like AJ, and I referred her to the link I put above to the BRCA+/BMX study results.

Lojo

Argh, my post got messed up. Short reply: the time frame on these studies is not meaningful for younger women. 15 yrs would put me at 56. I want to see data on the 30 yr time scale. The 30 yr risk of contralateral recurrence is in the 15% range. If I'd been 60 I would have just done a UMX. Plus all those years of anxiety every 6 months, for one modality (mammogram) which didn't work for me.  Also, I want to see comparisons between MX plus rads vs lump plus rads. (I have a family history of premenopausal BC - lost my mom, am BRCA negative, but clearly there are other genes involved.)

DiveCat

Ms. Beth Stebner replied to my email and advised me she has amended her article to correct the information; I am unable to check it at the moment but she was very gracious in her response. 

BayouBabe

Divecat - your email must have been more polite than mine!  I did not get a response!Glad she changed the story, but the info was still out there.  BRCA women and men do not make these decisions lightly.  An article making us look like thoughtless fools, when rather it is thoughtless journalism, is frustrating.  I am an English teacher, so I have no patience with poor reporting and research.  If you can't speak/write the truth/facts - keep your mouth and pen quiet.

SelenaWolf

This article specifically mentions that for BRCA+ carriers a double mastectomy may substantially reduce mortality risk...

"The study confirms what medical professionals have suspected, said Dr Kathleen Erb, a breast cancer surgeon at Allegheny General Hospital. "It tells us what we felt was true – there is no survival benefit to removing an unaffected breast, except in special cases."

Those [special] cases would include women who tested positive for the so-called BRCA1 or BRCA2 genes or other mutations. A genetic predisposition may mean that a double mastectomy can lower risk significantly, even if cancer hasn't been diagnosed yet, said Dr Kandace McGuire, a surgeon who is director of the pre-menopausal breast cancer program at Magee-Women's Hospital of UPMC."

http://www.smh.com.au/national/study-breast-cancer-survival-rates-are-no-better-after-double-mastectomy-20140903-10bst5.html

Anonymous

Of course what isn't talked about is that there are a lot of hereditary predispositions that have not been identified as well.  My mom, sister, & I have gone through genetic counseling, and while we are not BRCA or any of the others, the genetic counselor and doctor say that ours absolutely has a hereditary/genetic  component …..it just hasn't been found yet. (because there is so much breast cancer in family that it isn't just a fluke, etc.) 

Plus you have the symmetry issue for some people as well…..If you are a DDD+ in size, they aren't going to ever match that size.  You have to have either a reduction or BMX and do implants in both.  If you have cancer in only one side and were facing surgery in both, I think many people would choose to do both to eliminate potential risk and match better.    There is so much that goes into all of these decisions!

cookiegal

I always thought there was a benefit for triple negative.

I will admit that I worry if women are aware of complications that can arise from surgery.  Plastic Surgeons don't really dwell on those. There is obviously a risk of LE or infection on the prophy side.

Still if it is what works for you, it is what works for you.