One in Six Women Choose Double Mastectomy

I also am so tired of "researchers" being "surprised" that so many women choose this. The women were "younger" and "more educated". The fact that they're younger means they have many more years to have BC (and youger women with BC are statistically at higher risk of adverse outcomes) and the fact that they're more educated means that they likely did a lot of research before making the decision that's the best for THEM...not best for their friend, their neighbor, their doctor, or anyone else. I researched my surgery decision for a long time, told my surgeon my reasoning (I had a lengthy list of reasons) and he agreed with every one of my reasons. My mom who had BC in 1992 had a unilateral mastectomy. They did not do BMX then. She had a new primary last year. You can bet she would have appreciated the opportunity for BMX in 1992.

Uninformed fear??? Here are just a few of my VERY informed reasons:

1. Even though I tested negative for BRCA, I have a mom who had BC, an aunt who died of BC, a grandfather who had bladder and liver cancer, a great grandfather who had stomach cancer, and a dad (who was adopted) who had prostate cancer. (As stated above, my mom has since had BC in her contralateral breast)

2. I was an A cup. That's being generous. If you took the lump, you were taking 90% of the breast. My breasts were tiny and deflated from breastfeeding 3 kids for a year plus each. Mastectomy was the logical choice. To have any chance at having equal "breasts", I would have had to have an implant in the other breast, as well as an implant in the breast that was cancerous. Given my family history, my young age, and the fact that I'd already had multiple biopsies for lumps, I chose BMX. My team was fabulous and I am very happy with the outcome surgically and aesthetically. I feel better about my body now than I did previously. Given the fact that my cancer has not "behaved", I've been told numerous times that BMX was a good choice.

I am very aware that BMX does not improve my survivability. I knew this from my research adn my doctor and I discussed it when speaking about all options. My decision was well researched and well informed. Those researchers need to get off of their pedestals for a minute and actually SPEAK to the women that made the decision for BMX and perhaps they'll better understand, that the surgical decisions were both well researched and well informed. I believe it is the researchers who are the ignorant ones here; making assumptions that their patients are ill informed and uneducated. I am grateful to have been treated by a surgical team who supported my decisions. Articles like this burn me up every time I read them.

Hi!

As someone who chose a lumpectomy, I would like to applaud the article for recommending that people really take their time in making their decisions about surgery, regardless of what they choose. I remember that when I was first diagnosed, my immediate thought was "Lop them off!" But, I ended up having to do neoadjuvant chemo for five months. During those months, I had the time to really think about my decision about surgery. I also had time to get my BRCA results back, and to research reconstruction. It sounds like others responding to the article did take the time and did have good reasons for choosing BMX. But, I still remember that first sense of panic and my reaction to the cancer news. No one should make a panicked decision!

I did not give a rip what Angelina Jolie or any other celebrity did. Rates of younger women being diagnosed with breast cancer are rising, so it makes sense that bilateral mastectomies are rising. The article also said that these women were more likely to have a family history of breast cancer than other women. DUH. If they have a family history, are diagnosed at a young age, and take the time to educate themselves, it sounds like they made very well informed, sound decisions! Women also did not used to be given the option of BMX, so there's another reason not even mentioned in your research. Did they even consider that????????? Was this just a checklist, or did they actually sit down with women to discuss it? I am sure if they sat down with the women and looked at their individual circumstances, they would find that in the majority of the cases, the reasons were justified. If I was 80 years old, would I have had a BMX? Goodness no (but if someone wants to that's their decision). For me, the risks of infection, etc at that age would have outweighed the potential benefits. Age is a very rational factor to consider.

My dad had prostate cancer. He had his prostate removed. There are articles that weigh whether men are being over treated for prostate cancer, but the articles always point to the physicians decisions. My dad had a say in his treatment, yet, never is the decision of men in their treatment questioned. Why is it that since we're women, it is okay to question our treatment decisions and say that they are out of "fear" and that they are not "educated" decisions? Why is it ok to assume that we made decisions based on what Angelina Jolie did? Do you know how demeaning and insulting this is???????

If researchers would take the time to TALK to the women and not just treat us as numbers, percentages, and statistics, then they'd realize that we are educated individuals making decisions based on our unique circumstances. My cancer defied statistics and has not "behaved" as statistics say it should have. Thankfully I have a care team that treats me as a person and not a number/statistic, otherwise I'd probably be a statistic by now.

One other thing that researchers in cubicles fail to understand. They always point to overall survival. They completely disregard the impact on one's life of new primaries and recurrences. I understand, it can be treated and may not affect overall survival odds, but enduring cancer treatment a second time is not as simple as picking up an Big Mac at a McDonalds drive thru. Just once, I would like to see a researcher acknowledge what enduring cancer treatment a second time entails, before just blowing it off and just considering overall survival.

I have 2 friends who were recently diagnosed. I spent hours talking over the different surgery options with them. I helped them research different options, and encouraged them to discuss the pros and cons of all options specific to their individual situations, with their surgeons. Both chose lumpectomies and I support their decisions 100%; it was the best decision for them in their circumstance and I would not question it. Why then do researchers like this think it's ok to question the decisions of those who chose BMX?

Jamie, thank you for your response.The survey size was not very big, and that may be why the concerns listed by posters regarding symmetry and issues with ongoing "healthy breast" testing are not well represented. I also feel that patients, myself included (and probably a good amount of docs) take a patient's lack of genetic indicators with a grain of salt, especially when the patient has BC and/or other cancers in the family. BRACA and numerous other genetic mutations now discoverable by testing are likely the tip of the iceberg, so it is unsurprising that negative genetic testing does not have as big a wallop as researchers think it should. With the BC rate ever climbing (somewhat due to better diagnostics, but mostly due to it simply happening more), it is obvious to docs and patients that other things in modern lifestyles are contributing in ways that may never be fully understood. The highly educated patients in particular are very aware of this, so even those with both low/no family history and no obvious genetic indicators don't always take much solace in having no obvious genetic risk.

I'm on a roll today.....

Lisey's post made me think again of my mom and it reminded me of a different issue, that no one mentions when deciding on surgery choices. Unlike me, my mom's breasts were huge. Her UMX and wearing a prosthesis for years left her with severe back pain for years and years because of the different "weight" of the two. Even though she looked even in clothes, it was different forces pulling in different ways. Now that she has had the other breast removed due to cancer, her back pain is significantly reduced and she's much, much more comfortable. I never hear mention of back pain when the discussion of what to do with the healthy breast comes up. I guess it's just something we're expected to "live with".

Additionally, many women choose to keep the healthy breast, but have a reduction or an implant to make the breasts more symmetrical. This is an additional surgery (like removing the healthy breast), which adds risk of infection, etc. The risks of surgery including infection are often called unnecessary when dealing with a contralateral prophylactic mastectomy, but are never criticized when someone with UMX has them. Make no mistake, I am not criticizing UMX and plastic surgery on the healthy breast (or lumpectomy and surgery on the healthy breast). They are absolutely a women's right to have. I just get frustrated when the "risks" of surgery are always given as a reason women should not choose a BMX, but not mentioned in the other situations. I think the educated women do a lot more research that these (and other) researchers give them credit for. Perhaps talking more with them and understanding the real issues would give researchers a better understanding of this complex issue.

Agreed, KBeee.

Medicine is IMPERFECT.

Breast imaging is imperfect.

Surgery is imperfect.

Pathology is imperfect.

So mods, why the referenced article in subject on behalf of an IMPERFECT cancer industry? Insulting. Clueless. Condescending. Irrelevant. IMPERFECT.

Mammograms, ultrasounds, MRI, surgeries and some pathologists missed multi-focal invasions. Only the final BMX surgery "enabled" them to find multiple invasive lesions in both breasts. IMPERFECTION.

Neoadjuvant chemo does have the benefit of giving you time to consider your options carefully. I started out assuming I would go with a lumpectomy. But as chemo wore on, the thought of going through it again along with my skepticism of "cancer math" brought me closer to the BMX decision. While she tried to steer me away from BMX, my BS didn't do a hard sell on the lumpectomy with me and said in the end it was my choice. And her nurse nodded approvingly when I said since my body already demonstrated an ability to grow an aggressive, rare cancer I didn't trust it to not happen again. I honestly didn't care about what stats for overall survival she was citing.I also had a Variant of Unknown Significance on the PTEN gene and have zero clue about my father and his family history. So that factored in a little.

And then there was the Radiation Oncologist who told me right after diagnosis that a "sliver" of my heart would be in the way and get radiation. No thanks. After AC and rampant congestive heart failure among women on my mom's side (no BC though!) I really wanted to avoid it.

My surgery and reconstruction has been fairly uneventful. I will be honest about my regrets. There were times during the process when you're just like man, I'd be done right now if I would have just gone with LX and rads! And I'm getting married soon..My old boobs would fill out the dresses so much better!!

Regardless I did make the right choice for me.

We are faced with such sh*tty choices either way. You just have to do your best and move on!!!

I very much wanted both breasts removed but both my MO and BS advised against it. My cancer was aggressive and they wanted to focus only on the breast with cancer. They did not want any chance of infection to delay treatment. I understood that and agreed. However, it's been 2 years now and I still would like to have my healthy breast removed. I've had pain in the breast. A mammogram and ultra sound showed no suspicious areas. The radiologist said my breast tissue is very dense. I am to have another mammogram and ultra sound in 6 months. 20 years ago I had an excisional biopsy in the healthy breast that showed ALH. Dense tissue, pain, history of ALH, lobular cancer in the other breast and the stress of undergoing testing and yet my MO says Medicare will not pay to remove a healthy breast. Really? I certainly can't afford to pay for a mastectomy on my own.

I have to say that reading this report just made me wish I was given an option. I wasn't.

Cubbie, thanks for your efforts. I read the link you posted and it's pretty much what I've encountered. I will say this in defense of Medicare, all my treatments have been covered without question. Even Prolia was approved without a problem and I've read on this board that some private insurance companies are refusing to pay for it. That said, it is a government program and is sometimes difficult to make heads or tails out of coverage and why one thing is covered and another is not. They will pay for reconstruction (which I'm not interested in pursuing) but won't pay for a mastectomy of what I consider a high risk breast.

As the link posted states, my own hope lies in my breast surgeon's abilities to get the procedure approved. At my next appointment with her, I'll try to get her on my side. She's a very compassionate and caring woman and will hopefully take up my cause.

Medicare paid for my BMX, removing my prophylactic breast w/o a biopsy. Pathology showed it was full of DCIS & some good sized tumors after the surgery. Maybe it was the MO who wrote the orders, but maybe the BS since she is a woman. There was never any question as far I knew. Good thing since that's the side where IDC recurrence popped up 2 years later in my lymph node. Medicare is also paying for my Prolia. In fact so far (knock wood) not one thing has been denied except a second Dexa scan before 2 years was up to see if I should go ahead with the Prolia. Medicare told me to have the doc resubmit noting I was a high risk patient and they paid that too. That said - I have traditional Medicare and not a Medicare Avantage (HMO) plan. I don't know if that makes a difference.

yes!!!!! i couldn't agree more with all the comments made. I'm sick and tired of hearing why did you get a BMX? You were stage zero. Well, I'm young, family history, dense breasts, grade 3 with comedo necrosis, that's why! And I didn't want to deal with the stress of mammos and biopsies and fear. Screw that. But why should I have to explain it? My sister's husband said there is no way my surgeon recommended a BMX. Well, guess what, he did! And I had already made up my mind that's what I wanted anyway. I feel almost discriminated against sometimes for my choice. I do not regret it one bit. All the focus is on survival. There's more toit than that. There is quality of life. This really hit a nerve with me and I'm so happy to read the responses from everyone.

There are a lot of really good reasons women opt for lumpectomies, and they're very appropriate in many cases, but doctors and researchersshould not be criticizing women who opt for BMX.