One in Six Women Choose Double Mastectomy
Comments
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although I am opting for lumpectomy right now, I am in complete solidarity with my sisters who choose bmx. at the first hint of any new calcification, I will have no hesitation in taking them both off. I am past the age where my breasts are needed for breast feeding. their sole purpose at this point is sexual pleasure, and perhaps vanity. everyone above has extremely valid points, and I would just add that if I want a bmx, I am certain to tolerate it better at my age now, 47, than when I am 60 or 70 or 80, when I may have a number of other health complications which might make a big surgery with anesthesia quite risky.
do your homework. gather as much information as you can. find a team you feel comfortable with and then make the decision that's right for YOU. any condescension or judgement from others based on your personal decision should simply not be tolerated.
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I had neither mx nor bmx but still find the article annoying. In general I find a lot of this patronizing attitude showing up in research and in articles discussing the research. It's particularly galling when it turns up here on BCO. The dismissiveness and playing down of concerns, side-effects and issues is pretty widespread. On the other hand, the "dangers" of "over-diagnosis" are played up endlessly. It seems as though women just can't catch a break.
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A few more things that I don't think were mentioned on this thread. Approximately one in four women have to undergo a second lumpectomy, some even have to get more: http://jamanetwork.com/journals/jamasurgery/article-abstract/2491225.
If recurrence occurs second lumpectomy for breast cancer reduces survival rates: http://www.ucdmc.ucdavis.edu/welcome/features/20081210_2ndLumpectomy/index.html
As to recent studies that concluded lumpectomy+radiation might result in better survival rates than mastectomy, researchers themselves express concerns about the limitations of observational non-randomized studies: http://www.medscape.com/viewarticle/819313#vp_1
"You don't get a lot of granularity with SEER....Patients with multicentric or more complicated disease, for example, might have been more likely to choose mastectomy. The higher mortality seen with mastectomy could be the result of such an undisclosed oncologic detail."
"Our study is also limited by lack of tumor biology information such as lymphovascular invasion, extracapsular invasion, and size of nodal metastases, which are not reliably reported by the SEER database, and may portend a poorer prognosis"
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Just a note to annoying - I was 64 when I had my BMX. As I stated earlier, I couldn't be happier. I miss the sexual sensations - but i don't have to think about another mammogram ever!!!
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yes, minus two - I applaud your choice!!! and im glad it was a smooth successful surgery for you!! I would have no qualms in following in your footsteps, sister!!
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My decision to go with a BMX even though I only had BC in one side was due to what I had actually seen over the years. I worked in a small town pharmacy for 30 years and countless times saw women who had new occurrences in the "good breast" a few years later. I'm seven years out and have never regretted my decision.
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I respect your decisions to have BMX, but I did what I felt was right for me (and my surgeon agreed). At our initial appointment, after laying out my options, the surgeon asked me if Iโd like to participate in a โdecision treeโ survey. It consisted of reading slide shows and a brief video showing charts for various treatment choices, and then answering whether it affected my ultimate surgical choice. What hit home for me was that both my surgeon and the charts said that a unilateral mastectomy had the same survival & recurrence chance as lumpectomy + radiation. (Lumpectomy w/o radiation was not an option). That chance was 6%. With BMX, the chance was 3%. At nearly 65, those extra three percentage pointsโwhile doubling the chance of recurrence and halving the chance of survival relative to each otherโdid not make much of a difference to me. They did not add up to significant peace of mind, and 18 months and two mammograms out, they still donโt.
But not only was I BRCA-negative with no other variants, the only other cancers on either side of my family were an aunt with esophageal (and she was an alcoholic chain-smoker) and a half-aunt who died of liver mets from melanoma (and she was a fair-skinned sun-worshiper). My tumor was located very conveniently on the upper outside, where the scar is barely visible. I have very large breasts, not at all dense. I donโt find mammograms very painful. I had a short course of hypofractionated radiation to the tumor bedโeffectively, all โboosts.โ I pretty much sailed through it (I am acutely aware that my experience was unusual). And most importantly, the tumor was in my right breast.
My one second-guess was that perhaps I should have had a bilateral reduction along with the right lumpectomyโthe weight of my large breast pulled open the SNB incision and ruptured the seroma, but it wasnโt anything a few sutures and an extra two weeksโ delay before radiation couldnโt fix. I wanted to accelerate the next phases of treatment rather than add more post-op recovery time. My breasts are slightly asymmetrical, but no more so than before the lumpectomy.
Donโt get me wrong: if a new primary arises within the radiated field of my R breast, or elsewhere that would require oncoplasty should I get a second lumpectomy, I would most likely have a mastectomy. And I would then reconsider removing the L breast for symmetry, but not out of a concern for developing a contralateral tumor; and with my family medical history being a cardiovascular trainwreck, I would be wary of radiation with my heart in the field. I would likely skip reconstruction, as I prefer as little surgery as possible.
Everyoneโs choices, ultimately, are right and proper for them. As the car ads say, your mileage may vary.
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hi all. i'm new today and in the process of deciding what to do. i am lucky to have all three options on the table: lumpectomy + r, umx, and bmx. i've been doing a lot of reading and talking with survivors. i am deciding to get bmx. although i am genetically negative, but have a family history of different types of cancer. my mother had bc in 1991 and there were no options for her, not bmx, not reconstruction. she has regretted not having reconstruction ever since and when i talked my options over with her she said that she wished she could have done a bmx with reconstruction. other factors for me are that my daughter young, i already deal with anxiety in my life, and i never want to do this again. another factor is motivating me and i haven't seen it addressed anywhere is the repeal of obamacare/aca and the likelihood that pre-existing conditions will no longer be protected. this will leave me uninsurable. if i were to do a umx, paying for testing for the rest of my life would be an incredible hardship and if i were to get a recurrence i have no idea how i would pay for treatment. even if i would be able to get medicaid at that point who knows what would be covered. so for many of the reasons that i've seen posted here, my personal reasons and my political reasoning, i will be 1 in 6.
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Summer - good luck as you move forward. You might consider joining the current Surgery thread, or check out Breast Reconstruction 101.
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I found the article interesting, because this was not my experience working with a breast surgeon at a breast clinic. I'm 42, and had my first mammo 6 months ago (I know, I know...meant to start at 40 but....) Anyway, I ended up going to the specialist because I had a suspicious finding that called for an US, and I wanted to get same-day results.
Looks like a cyst, and got a BIRAD 3 and 6 month follow up. However, during my consult with the BS, when I told him my mom had Stage 3 BC at age 42, and it was triple negative, he put me in the "increased risk" category. My breasts are also somewhat dense. My mom does not have a known genetic mutation.
Nevertheless, in that FIRST consult, he said I would qualify for a prophylactic nipple-sparing BMX with reconstruction. That kind of floored me, because I thought that was only for women with really, really high risk. I don't have benign breast disease, and probably don't carry a genetic mutation, since my mom doesn't....but I'm going to get screened.
Anyway, the BS made it kind of sound like "no big deal." You can preempt cancer, avoid rads and chemo, and end of looking really great. What's not to like about that idea?
So my question is now....after my initial shock....what is not to like about that idea? I'm sure there is plenty. However, a lot of women DO get implants, and breast lifts, and augmentation and reductions for solely cosmetic reasons. I realize this is a more extreme surgery....but is it? Would love to hear opinions.
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Shawna, it is a big deal. I didn't have radiation or chemo, either, but the BMX itself wasn't very pleasant. I, personally, would never recommend getting a prophylactic BMX without high risk of cancer.
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Shawna - I on the other hand would recommend it in a heartbeat. Well no, the surgery wasn't a walk in the park, but I only took pain pills for a couple of days. The findings in the lab reports after surgery justified my decision in terms of what would have been coming down the road. The expanders were horrible, but it was temporary. The exchange was a breeze. I kept drains in both times for as long as recommended so no seromas, and no infections either. Sure - it's major surgery so you could have complications - but many of the women who have no problems stop posting on these boards and are getting on with their lives. You won't see many of the happy, success stories.
The only down side (still true almost 9 years later) is the lack of sexual stimulation through the breasts. I do miss it.
That said - I was 64 when I was diagnosed with DCIS and had to decide between a lumpectomy or a mastectomy. I was in great health otherwise. For me it was a no-brainer. I was unwilling to deal with the whole issue more than once.
Mastectomy is not a decision to made lightly, but you won't know what all is lurking there until its out. Get all the genetic testing available and make sure you are at a major medical center where the possibility of errors & problems are less w/a doc that does tons of mastectomies every week. And please let us know what you decide.
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Yeah, my situation was a bit different. (Even though I had zero complications, either. I read a study that said about 50% of women who get a BMX with implant reconstruction experience at least one complication.) I was 45 and had always very much enjoyed my breasts. I liked the way they looked and felt. Now I have very nice reconstruction but I never wanted fake ones in the first place and I feel pretty much nothing on my chest. I also used to enjoy doing push-ups and ever since my surgery, because my pecs were cut, I can't do them any longer. I started to, but realized that my implants moved out to the side and were getting worse every time I worked out. I do other exercises now, but I do miss the strength I used to have in my pecs.
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I decided to do the DIEP bmx after never once reading on these boards of anyone regretting it. It is major surgery and should be considered thoughtfully if you have any other conditions. But I am in otherwise good health and figured why not get a body make over at 67? I did not do all at once but just had the bmx and expanders (to hold the place for next step). No problems with any of that. Need to do radiation and then PS will do reconstruction with my own tummy fat. No troublesome implants. Many surgeons discourage DIEP because they are not able to do microsurgery and push women in other directions
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Remember that a certain percentage of women aren't candidates for DIEP. I did not have enough flesh on my stomach for it. The DIEP doctor I consulted with (who does almost exclusively DIEP surgery) said I would end up with less-than-A cups and did not recommend it.
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I believe that there are all too many recommendations (that can turn into mandates if you don't know the right arguments to make -- symmetry, back pain, posture, fear of continued monitoring, etc.) with regard to women's health that are based on cost avoidance. BMX with reconstruction is a heck of a lot more expensive than UMX with prosthesis. We are NOT stupid. We can understand the value of the statistics that say our chances of contralateral breast cancer are no higher than our odds of getting breast cancer in the first place. But we did get it! We're already in that 12% or so. (I know the studies supposedly account for this.) And, as has already been pointed out, survival isn't the only thing. Isn't the data base that all these studies are relying on incredibly deficient in terms of how they code local and distant recurrences? I've read that they only get counted when you die. Does anyone know if that's true? Of the population that didn't die within 10 years, how many have metastases and how effectively are they responding to treatment? How many die at 11 years? 15?
I know I genuinely question how well the population (that leads to the stated odds) actually describes me. Nope, no BRCA mutation, but what the medical establishment knows is dwarfed by what they don't know. Does the population the studies are based on distinguish between post-menopausal women with meningiomas and those without? (the hormone basis of meningiomas is being heavily studied right now) Don't think so! So, again, I'm already in that relatively 'small' lifetime risk of meningiomas. That is quite enough of a jackpot for me. My contralateral breast is coming off and I'm very much looking forward to getting rid of my prostheses.
Statistical odds reflect a population -- not a person. Skepticism is a reasonable way to approach the studies in my opinion.
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This article struck a nerve. My personal experience of 20+ years of mammograms and call backs and failed detection method added up to a full year of anxiety and diminished quality of life. Now, I'm in for another full year of anxiety and reduced quality of life. I plan to have a massive bonfire of all those ridiculous clearance letters with pink ribbons on them from my local hospital. I will add all the copies from the radiologist reports I never saw that were for years only alluding to the diagnosis I am now facing. How stupid was I to not insist on seeing the reports. What a waste of my time and energy. Standard imaging techniques are a nightmare when you have dense breasts. Why would I consider subjecting myself to another mammogram? Save the healthy breast? Seriously?
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This has been a topic of interest for me over the years. In medicine there are always the opposing forces of the theoretical and the practical. In the end we can only try to insure that patients are making informed decisions by explaining the patient's disease and treatment options, and the odds of a good outcome with each treatment, the best we can. The decision is ultimately up to the patient.
In my opinion, and if it were me, if two types of treatment have the same overall outcome it becomes a matter of "which one will disrupt my life (and the lives of my family) the least?" and I believe this applies to both genders and many different diseases.
Here is a link to an article related to the increased number/rate of mastectomies: https://www.ncbi.nlm.nih.gov/pubmed/25159548
Here is a link to an article addressing the cosmetic results of mastectomy especially the resulting asymmetry. I believe this is the future of breast cancer surgery: https://www.hindawi.com/journals/ijso/2012/907576/
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One reason for the rise is that the decision did not used to be up to the patient. Patients did not used to have a choice. Now they do, so you can't really accurately compare numbers from when patients were not given the option. It is ultimately the patient's choice, and it is nice that women have so many options.
BCT does have the same overall outcome, but the article does state that local recurrence is higher. From someone who has had a local recurrence, I can tell you that it is very disruptive to my life and family. Mine was after a BMX, so it's important for women who choose that to realize it is not protection against local recurrence. I understood that and was diligent in my self exams and found my recurrence. I know many women who never examine themselves because they falsely believe they cannot have a local recurrence. It is also important for younger women to understand that for them, outcomes are NOT the same; this does not seem to be communicated to younger women.
I also had one of my tumors missed on MRI, so the fact that MRI is often used to tell women that their chemo rid them of all cancer and they can safely proceed to lumpectomy scares the heck out of me. I can't tell you how many people I know who had surprising findings at the time of mastectomy; things that did not show up on imaging. I think women need to be informed of this too. So the key is that they need to be informed...long term outcomes are the same (depending on circumstances), but also that imaging may not be perfect. For many women lumpectomy will be the best choice, for many, UMX may be the best choice. For others, BMX may be the best choice. I fear the pendulum is swinging to push women towards lumpectomy without informing them equally about all options and the pros and cons of each. Ultimately women should be able to make the choice, without criticism of their choice.
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New to the forum. Just diagnosed a couple of weeks ago. I have done a lot of research and personal introspection. Still have the MRI to go before the surgeon and I have the final treatment plan set. But definitely surgery, it's ILC grade 2 (don't know stage yet - MRI
so a mastectomy is already high on the list of surgery options. All of the journal and peer-reviewed articles (& I've seen this one too) seem to consider "survival time" being the gold standard for your surgical decision - I don't want to just live longer - I want to live BETTER! I'm healthy, early 60's and looking to retire and travel a bit after next year. I don't want to have to go through the bi-annual mammo's & U/S and biopsies of every little inconsistency on the screening. Just went through all of that for 4 weeks (and not done yet!!). I would rather deal with this now, and spend the rest of my life more relaxed about it. I don't need to breast-feed, my body-image is SO not related to my breasts, as I like to say "I dress for comfort, not for speed" - I live in khakis, T-shirts and sweatshirts. I am currently healthy & fit and have a large strong support system surrounding me. I choose to be proactive. The fact that I am going to choose a BMX (isn't that a bike!) is not being done out of fear, and I am far from uninformed. I do not plan on reconstruction, going to live flat and comfortable (Heck, they aren't that big now!) I was so encouraged when i found this community. It is really mind boggling why "they" are so astonished over the increased numbers of BMX requests. Perhaps it's because more and more women are realizing that it's their body, their choice and that quality of life is much more than "will you live longer"? Deb
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Welcome, Deb.
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Hi, Deb, from another who had a BMX (I wish it had been a bike!).
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Maureen, you are exactly right. Why would I be happy with extreme asymmetry? I'm 62 yrs old, so one breast is droopy, and then the other one would be high, round, and firm? I don't think so. Like you, I'm tired of reading that women have bilat mastectomies out of misinformation. (I'm at the point where most so-called experts are pretty exhausting, and often end up being proven wrong down the road). Let's have these experts have to look at themselves in the mirror for decades with extreme assymmetry.
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BosumBlues, even though it's a real PIA to do so, if it really bothers you and/or causes you anxiety, by law your health insurance has to pay for you to have the other breast removed if you so desire. At least that is what my plastic surgeon told me.
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Hi jinmo - just got the last of the diagnostics - the contrast MRI. WOO-HOO!!! Stage IA! no lymph nodes, nothing in the left breast, nothing we didn't already know about in the right. But... still having the BMX. Sx scheduled for Apr 24th - day surgery (who'd a thunk it!!) In and out in less than a day. Great friend coming from across the country to help me through the sx & recovery and do some fine dining while she's here! No recon, & I should be up and about enough to go to my students' grad early June & maybe be able to head down to WA and pick up my motorhome end of May (if I'm good!) - bought with retirement & vacation in mind. Even the possibility of a drive back to Ontario to visit my bro's before the fall semester starts up again.
I can't think that these things would be in the cards if i opted for LX + rads. I feel like I would be putting my life on hold for another year. Life's too short.
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Women choose lumpectomies perhaps because there is evidence of two treatments with similar outcomes with one potentially - at least in the immediate period ( the ongoing scanning and monitoring of women over decades not counting) - less disruptive.
In very early disease or in patients with large breasts and multiple comorbidities that rings true.
However I have often wondered....
Are we treating breast cancer differently for social and psychological reasons then cancer of any other organ?
Unless the organ is necessary for physiological survival - brain, heart etc - my understanding is that if an organ has cancer that organ is removed, or one elects for as wider margin as it is safe for function. So your kidney comes out, so do your ovaries, a large chunk of your bowel, a lobe of your lung etc
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Everything I was going to say from a personal standpoint has been said quite well already by many of you who posted above that were pro-BMX. I'd like to come at it from a different angle- the doctor angle (based on observations of a patient and periphery healthcare worker point of view). Warning: the following comments may not sit well with everyone...
1) Many of today's docs follow a very clinical, too little emotional, minimalistic, non-aggressive approach to medicine. The goal is to get in, deliver their message/diagnosis as non-emotionally engaged as possible, advise of the treatments that follow clinical guidelines but only to the minimum and keep the potential for hysteria/patient breakdown low.
2) UMX takes less time than BMX which means the doctor can see more patients/get in more than 1 surgery that day. Home by 5 and brought home lots of bacon to fry up in that pan!
3) UMX is what they would want for themselves (if they are female) and they project that on their patient. If the doctor is male, his assumption is that's what any woman would want and he projects it onto the patient.
4) It is rare to find a doctor today who will answer you straight if you ask them what they would do/recommend if you were their wife, mother, daughter, sister, etc. they talk around the question or dismiss it. And this is different from number 3 above as anything having to do with self can have so many psychologically inherent hangups. But decisions for someone whom you love unconditionally and cannot imagine living without? Often a very different answer.
5) Me telling you that you only need UMX should be good news because I'm telling you the other breast is ok-this also means your fear is unfounded and therefore irrational!
6) Do the minimum (still following guidelines) hope for the best and if things don't work out and it comes back, we will take that treatment money too.
7) what do you mean you want a BMX? Didn't I just tell you you don't need a B you just need a U? Why are you here if you're not going to listen to me? -obviously this is a little exaggerated (I hope). But docs need to figure out fast that the age groups they're used to seeing with cancer are now computer savvy and have educated themselves on the disease, treatment options, side effects and even reviews of their doctor! They also aren't afraid to question their doctor point blank, have no problem dropping a doc they're dissatisfied and finding a new one. They also want some control in a time where they have little control and they have no problem letting you know it. And so, Dr, let's get that BMX scheduled!
8) our oncology team met and we have decided you only warrant treatment UMX with AI for 5 years because you're already 63 years old and you don't have much longer to live anyway...(if you were 43 the treatment recommendation would be different). Forget the Death squads everyone was so worried about with Obamacare-they're already here. And not just in oncology!
I'm not trying to beat up on all doctors. There are plenty of great ones out there and they work to make us well. The point is the dynamics are changing-on the doctor side and the patient side. And not always for the better. Many of today's doctors more so are worried about making money, patient quotas, hospital quotas, insurance quotas and only working 8-5(preferably with no on-call with hospitalists or PAs to do their rounds). Much of it is caused by the healthcare system we find ourselves in today. Part is caused by the changes in how doctors view their position-is it a job to make as much money as you can or a career you are passionate about that you happen to get paid for? Part of it is patients being more educated and more vocal. Doctors are not God and it is perfectly ok to question them and make decisions that leave you (the patient) with peace of mind that you've made the right decision. The doctor should not question that provided it's in the realm of the guidelines or at least is something that's being studied. After all, the bottom line isthe doctor does not have to deal 24/7/365 with the consequences of the decisions that are made, the patient DOES.
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I don't think you are beating up on doctors - but on a world that is changing and as part of that change not all is for the better.
We vote, we pay taxes, we should have a say in the quality of healthcare - or at least we should before we actually need healthcare. Ultimately we are all responsible for how the sick and the elderly are treated in our society.
A BMX attracts a higher fee than a UMX - for both anaesthesia and surgery - the highest by far is the addition of the plastics surgeon.๐
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ohhh and to be clear on my personal view - I had a UMX because I had a largish tumour and I did not wish the potential chemo delay from a complication on the nontumour side
I will have my other breast removed when my Onc let's me take my port out.๐
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And here is something no one has brought up yet, but that was just encountered by someone very close to me. She had UMX, as recommended by her doctor. She had plastic surgery on her remaining breast so that it matched her reconstructed breast. She had a good outcome. Fast forward 2.5 years. She does in fact develop cancer in her remaining breast. Not only does she now need more surgery but now she cannot have a sentinel node biopsy in that breast because the lymphatic system has been altered by her prior surgery. Hmmmmm. This was never mentioned by any of her doctors who recommended the UMX. Now she needs to decide to get an MRI and "trust" it, even though it may miss small mets to the nodes, or she needs ALND.
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