Why a Double Mastectomy? It’s Complicated

Last week a new study with an inflammatory headline went viral: “Double mastectomy ‘not necessary’ for most women.” The study, from the University of Michigan Comprehensive Cancer Center, found that 70 percent of women who had a double mastectomy following a breast cancer diagnosis did so despite a very low risk of facing cancer in the healthy breast.

What troubles me about this genre of breast cancer research is the finger-wagging tone. Full disclosure, I had a double mastectomy without reconstruction in 2009. I was 38. I knew the risk of cancer appearing in my other breast was relatively low, but I made the decision that was right for me. In choosing a double mastectomy, I was in the minority. Only 8 percent of breast cancer patients opt for double mastectomy. That means, 92 percent of us choose something else. So why does that 8 percent drive researchers to distraction?

I picture breast cancer researchers in their labs, their clinics, their meetings, scratching their heads and asking themselves, “why do these crazy ladies lop off their breasts? They obviously don’t have the facts. They are making an emotional decision based on fear and anxiety.” And, for some women, that might be true. They might not know that (for most) a diagnosis of breast cancer in one breast does not increase the likelihood of breast cancer recurring in the other breast. They might decide out of pure fear. But I’m guessing the real reasons why 8 percent of breast cancer patients choose a double mastectomy are much more nuanced.

My decision to have a double mastectomy was complicated. A big factor for me was not wanting to have one breast. It might sound silly to some but I didn’t want a singleton. I wanted to be able to wake up, pull on a t-shirt, and walk the dog. That didn’t feel like too much to ask. I didn’t want to have to wear a prosthesis just to feel “even.” Reconstruction, which solves this problem for a lot of women, was not a good option for me. Another factor in my decision was that my remaining breast no longer felt sexy. I feared it would become a lonesome reminder of a terrible time in my life. Plus, I wasn’t planning on having children or breastfeeding.

For me, a double mastectomy made a lot of sense. But my reasons were all very personal and, therefore, difficult to measure in a research setting. I’m guessing other members of the double-mastectomy club have equally complex reasons for making the decision we did. Why must researchers continue to spend good money trying to figure out why we weren’t more swayed by data? Got research money to spend? Spend it on saving women’s lives not second guessing our decisions.

 

57 Responses

  1. GLF says:

    SAY IT SISTER!! I too had double M. Had to fight for it but they eventually removed the other one. Had stage 3 ILC and it was BIG (2009 also btw). Didn’t show up on scans and only reason they biopsied it is because everyone could feel it. I didn’t trust their scans or my other breast or their statistics…glad they’re gone. I’m so with you on this!

  2. Andrea says:

    I had a double mastectomy with reconstruction in 2012 and like you, it was for several reasons. The first reason was that I didn’t want to have to worry about cancer showing up in the second breast at a later date. I had dense breasts, which I found out recently gives you a 50% greater risk of getting cancer, plus the density makes it difficult to identify tumors. My cancer was already in 2 of my lymph nodes, so I didn’t want to take any chances with the second breast. If you just have 1 breast removed, then you have to have the other breast shaped to match the “new” breast. As you age, the natural breast will sag and the reconstructed breast will not. If you are self conscious about this then it will be time for another surgery on the old one to fix the shape again. No thanks! I was especially thankful of my choice when the pathology report showed cancer in the “good” side too. Removing both was a great decision for me!

  3. Paula says:

    I had a double mastectomy without reconstruction 3 1/2 years ago. I had stage 1 IDC in one breast and decided to have a mastectomy to avoid radiation. Then a few months later I had the other one removed. I did this to lessen my chances of reoccurrence and because I felt lopsided. I also thought about the risks of radiation and the risks of reconstruction when making this decision. Mammogram missed my cancer (I found the small thickening 1 month after my yearly mammogram) and at the time my insurance would not pay for yearly MRI’s or BRACA testing. Biopsy from my second mastectomy showed ADH. It was the best decision I could ever make! I am in my mid fifties and my breasts did not define me as a person. I do not feel like I “over did it.” It was freeing and I would do it over in a heart beat!

    • Thanks for weighing in Paula and for making the point about radiation. Avoiding radiation is no small thing! I also appreciate that you brought up insurance restrictions. I have no doubt that insurance limits, money worries, and time constraints are complicating factors for MANY women.

  4. Stephanie Shea says:

    I was diagnosed w/ invasive lobular carcinoma 2/19/14 on the right. I had a MRI which showed a 3.5cm tumor on the right & a “spot” on the left. MRI guided biopsy on left was fine. Had it have mastectomy because of the size of the tumor. I had decided from the beginning I was going to have a bilateral mastectomy because I did NOT want to go through it again a few yrs from now. My Oncologist advise me after surgery, lobular carcinoma has e tendency to come back on the other breast, so he felt I made the rigt choice.

  5. Short, to the point, and VERY eloquently put–thanks for this.
    Not a one size fits all decision. Highly patient specific.
    Agree with all of your thoughts.

    Amy Byer Shainman
    The BRCA Repsonder
    BRCA Health Advocate
    BRCA 1 positive previvor
    @BRCAresponder

  6. Candace says:

    I respect and admire all of you who made considered, informed decisions and made the best choice for you. It should be a personal decision. I’m grateful for dialogue about the choices and the side effects of each because I think no one should have a double mastectomy because they’ve been given bad information or only partial information. When I was diagnosed in 2010 with single quadrant DCIS and was “assigned” a surgeon within my medical group, he told me that the best decision was a mastectomy and he recommended a double mastectomy for cosmetic reasons. He also told me an MRI would not add any information to the decision. Thankfully, he left the group before my surgery and my new surgeon confirmed the localization of my cancer with an MRI and discussed all my options starting with the minimum surgery required- a lumpectomy. He suggested I talk with a plastic surgeon also. My decision was to remove as little of my tissue as needed and no reconstruction. It’s important that we have all the facts and access to talk to other women who have made these decisions when making our own.

  7. Sonya says:

    Love, love, love this! I too am a member of the double mast club. My reason is mostly due to the struggles I watched my mom go through – she had 10 years between mastectomies. That 10 years was really hard on her. When I was diagnosed at age 31 I basically said “hell no, if you’re taking 1 you’re taking both.” Even though I’ve had a few issues with my non cancer side, I’m still very glad I made the choice I did. I understand why people make different decisions. I chose what was right for me.

  8. Elizabeth A says:

    I agree with every word. I feel like I have been chasing a complete reconstruction since my first mastectomy (in June of 2012), when they installed my first (leaky) expander. Walking around with only one breast was like wearing a neon sign that screamed “I’m a cancer patient! Invade my privacy!”

    I’m currently recovering from my latest attempted recon – a set of TRAM reconstructions that failed over the course of six days in hospital and four surgeries. I don’t know what the next step for me is, whether I will ultimately try again or not. I am not pleased by my flat chest, but I am relieved that it is, at least, symmetrical.

  9. Katie M says:

    I was diagnosed with invasive breast cancer when I was 27 years old. I have no family history and I am BRCA negative. I, like you, had a double mastectomy.

    Now, eight years later, I am a postdoc at the University of Michigan working with Sarah Hawley and Steven Katz – the very people who are publishing this important science about the majority of women not needing double mastectomies. So when I am sitting around – every Tuesday in fact! – with these highly intelligent researchers “scratching our heads and asking ourselves, “why do these crazy ladies lop off their breasts?” we actually do have a lot of facts. Not only because I am sitting at the fairly small conference table, covered in surgical scars under my clothes, but because these researchers have been thinking about this sometimes puzzling question for a long time. They eat, breathe, and sleep it. To be honest, I am so tired of talking about why people get double mastectomies that sometimes I want to stab myself in the neck.

    The point that is missed in reactions to these “anti-double mastectomy” stories is this: we don’t actually care about why you had a double mastectomy. You are an informed, intelligent, confident patient, who understood her options and made the best choice for herself. Nobody cares why I had a double mastectomy either. I understood the survival equivalence. I knew my risk of a new primary was negligible. But I made a good decision for myself based on full understanding of the facts.

    Who we care about are the patients who don’t understand the decision – patients who think that if they remove both breasts they can never have a distant recurrence. Or that because they no longer have breasts, they can stop taking their Tamoxifen. Not inconsequential is the subset of patients nobody bothered to tell that reconstruction is hard, sometimes dangerous, and that they will never look the same again. There are patients who feel good about their decision in the moment, but wind up having deep regret in the future. There are also women living with chronic post-mastectomy pain who never knew such a thing was even a possibility.

    These women matter, and this is why we study them. It’s also why NIH gave us over 15 million dollars to better understand breast cancer decision making.

    That said, so glad you are doing well now now boob-less and all. Truth be told, I never regretted my decision either. 🙂

    • Hi Katie,

      I so appreciate your input. I’ve interviewed several researchers at the University of Michigan, including Steven Katz, for articles on breast cancer and I know you guys are on the frontline of this issue. Yes, I knocked your colleagues a bit with that “head scratching” comment. Forgive me, that was just my frustration talking. I know researchers in this field are well intentioned. I know you’re concerned about women who don’t get good information upfront. But information gatekeepers — doctors and journalists alike — can’t ignore the tone of paternalism that seeps into this conversation like black sludge. The contamination happens somewhere between the research leaving the lab and the headline appearing on the page. You and I may not be generating it, but we shouldn’t be ignoring it or wishing it wasn’t so. On a related note, I am also concerned about the framing of reconstruction in the breast cancer conversation. When I was in the throes of my treatment decisions, one surgeon told me “not to worry” that radiation would give me a “breast lift.” Another told me that choosing CPM with reconstruction was the same as a “free boob job.” A third told me my new “breast-shaped mounds” would look “normal under clothes” and wasn’t that all I really cared about? Yikes! Time to shake-up the conversation. Thanks for speaking up!

    • Collette ryan says:

      Hi. Thank you so much for sharing this.I was diagnosed with stage 1 idc .8cm mass. E+, P+ Allred score 7/6. I had very dense breasts. Nothing showed on mammogram or ultrasound. I ended up getting an MRI to ease my mind. I had a double mastectomy with implants. I’m supposed to take tamoxefin. It makes me really feel awful. My oncotype score was 17. I’m having a hard time getting a clear picture of my risk if I don’t take meds. Can you give me some insite? Thanks so much!

      • Hi Collette, I’m sorry to hear you’re feeling awful on Tamoxifen. The drug affects women differently. Some feel terrible. Others hardly notice a blip in their body chemistry. I landed somewhere in the middle and took it for a year before I was switched to an AI. I’m not a medical professional in any way and cannot offer any medical advice whatsoever. The pros and cons vary on a case-by-case basis. Don’t be shy about asking your oncologist to clarify the risk reduction he/she is hoping to gain by keeping you on Tamoxifen and what (if anything) you can do to lessen your side effects. If you don’t have a clear picture of what you stand to gain by taking these drugs that means your oncologist isn’t doing his/her job. It’s your body and your life, don’t hesitate to ask as many questions as you need to fully understand his/her recommendations. Meanwhile, there are some decent online support systems. For information, check here. For a discussion board where you can find other women discussing the ups and downs of hormone therapy, click here. Hope this helps!

  10. SANDRA says:

    My mother chose a lumpectomy after she found her lump at 79 years old, she was very concerned about “image”… WTF? Yes of course the cancer returned within 2 years resulting in a mastectomy, radiation, chemo and tamoxifen was well as the puffing up her damned uncomfortable bra with a prosthesis–and the cancer came back in her ribs and lung within the next 2 years killing her.
    I vowed that if I ever find a lump there will be no big discussions involved, my choice is to have both breasts removed!! Family history gives me a time-bomb ticking away, I have already had cervical cancer resulting in a hysterectomy aged 29 now 40 years later life is far more precious than looking lop-sided/flat chested or “normal”. There is still a very long bucket list to tick my way through!

  11. Momine says:

    Katie, thanks for filling in some blanks regarding the research at the root of some of the articles appearing in the press on this issue. However, it seems to me that in the scenarios you outline, the problem is not that the patients choose BMX. The problem is that their doctors are giving them wrong or incomplete information. The latter problem would presumably affect all kinds of other treatment decisions as well, not just the BMX decision. In other words, maybe we should focus more on why trained professionals are not providing full and correct information.

    Catherine, I am also baffled by the “normal under clothes” thing. My bra-liners look “normal under clothes,” without my having silicone wedged permanently under my pecs. The only time I would care about how my breasts looked would be without the clothes. Surely I am not unique in that.

  12. Belinda Wood says:

    At aged 42, my cancerous breast was removed. Pathology reported several big tumours, missed by Breastscreen just months earlier, & missed by diagnostic mammogram & ultrasound, despite bloody nipple discharge. My breast density was similar to the cancerous tumours lurking in it. Xray and ultrasound don’t work reliably for dense breasts.

    By now, no routine imaging could reassure me my right breast was tumour-free. That did my head & heart in. I didn’t want to go through the harrowing experience of chemo only to find out I had to do it again because of my other breast.

    An MRI was an alternative. In 2007 Adelaide had one MRI with a breast cone. I was ineligible to use it. My option was to pay to go to Melbourne, to access an MRI with breast cone.

    Time was ticking, I needed to finish surgery, heal & start chemo and radiation. It became an easy decision – get the remaining breast off asap, take with it my fear of disease lurking undetectably, & keep my treatment within the optimal time windows between surgery, chemo & radiation. I made that choice, & do not regret it at all. I regularly “go flat” and can sleep on my front. I have no recon plans, as metastases are enough to manage.

    • Hi Belinda, You make a very important point about dense breasts increasing a woman’s risk of having breast cancer that’s difficult to detect. Legislators in my home state of Massachusetts just passed a new law requiring doctors to tell patients when a mammogram reveals dense breast tissue and what that means for them in terms of risk factors. This is another case of doctors not clearly communicating with their patients. As Momine says in her comment, why the focus is on “what women are doing wrong” and not doctors are doing “wrong” is a mystery.

  13. Kim says:

    My mammogram found mine in October 2009, it was in my left breast, a small tiny contained little thing. So my doctor suggested taking the one, but then we would have to cut the other to make them match. I said…..well, if you are going to have to cut it up, just take them both. I told him right then, I wanted no reconstruction. It’s amazing how many people will question your decision. My doctor wanted me to still go and talk to a plastic surgeon to hear that side of it, but my mind was made up. I talked to my husband and asked him what he thought, and he said it was my decision, it’s my body so I had to decide. He said he wanted me to be healthy and alive, that my boobs didn’t make me who I am. He has supported me completely.
    Well, anyway, it has been 5 years Feb 18, 2014 and I haven’t regretted my decision in the least. I really feel I am kinda cute being flat chested. I can wear all the little tops that I couldn’t wear before. If I can just firm this belly up. I do have 3 pairs of fake boobs in different sizes, so any giving day, I can be a big girl or a average size girl, whatever I am in the mood for. Didn’t mean to write a book, just so happy to meet some more ladies of the “Breast free club.” (This comment was edited for length.)

    • Thanks for your comment Kim. (Hope you don’t mind that I edited it a bit for length.) I appreciate your perspective, and I’m glad to meet more members of the “breast-free club” too ; )

  14. Gwenie Mugliston says:

    I had a double mastectomy in 1988 followed by reconstruction with silicone breast implants embedded beneath my pectoral muscles. During the months of the expansions to the placement of the prosthesis to the removal of both prostheses my whole chest was very PAIN filled. Then because the silicon was found in my pectoral muscles they removed the pectoral muscles. The pain finally stopped when everything was healed. It was a 4 year ordeal and I would never, ever get prostheses again. I would get the mastectomies as the rationale for doing that was scientific. My husband was absolutely wonderful during the whole affair. Now 25 years later I find myself once more hoping to find a husband and so far not one man can get past the absence of breasts. They just can’t do it. What does that say about our culture? Mostly they can’t stand to look at my chest let alone feel it. Some how I get lost from sight when they see the lack of boobs. Sigh.

  15. Thanks for this. Just came home from the hospital after a double mastectomy — large DCIS that filled most of the “guilty” boob led to a decision to remove that one. The relatively short-term trauma of breast removal appears to be a lesser evil than the long-term effects of radiation and tamoxifen or aromatase inhibitors. My doctor and a committee of her colleagues agreed.

    I elected to have both done so as not to be lopsided, especially considering the chronic back pain that could be aggravated by posture problems. Also given the enhanced likelihood of a growth in the contralateral breast, after four surgeries I simply could not contemplate any more of the ongoing horror show in the future. There is, after all, a difference between survival and recurrence. Does nobody consider the quality of life involved in surviving with recurring surgeries, radiation, and chemical treatment?

    The same aversion to future painful treatments motivated me to skip reconstruction — that looks like a recipe for endless surgeries and potential complications. Probably would feel differently if I were younger and in the market for a man, but at 70 I’m neither of those. Even so, one oncologist told me, with a straight face, that if I didn’t have reconstruction I would probably become suicidal. The pressure on women to have reconstruction with little or no consideration of women’s individuality is definitely there. And it’s obnoxious.

    • Thanks so much for adding to the conversation Vicky. Suicidal? Wow. Just wow. Glad you stood up for what felt right for you and your body. I’m not against reconstruction. I am for women’s choices being heard and respected. Thanks for sharing.

      • I’m an editor and a micropublisher for my clients (and myself…). Intend to write a book on this subject — the choices and decisions we have to make and the pressures we face — as soon as I can climb out from under the mountain of paying work that has gone undone during the present little drama. Will be very interested in interviewing women with your kind of insights. You have my e-mail. If you’d like to participate, get in touch.

        best, –vh

        • Thanks! The topic does beg for discussion. I’m writing a memoir about it and am always happy to talk with fellow writers and media folks.

        • Linda Weidner says:

          May I present another perspective. First may I say I feel VERY fortunate to have lived almost 25 years cancer free since my mastectomy at age 45. Lumpectomies were not even an option at that time and reconstructive surgery was only done at other parts of the country. In hindsight, however, I am VERY glad that I had wonderful surgeon and oncologist who supported my decision to have a mastectomy WITHOUT subsequent chemotherapy and NO reconstructive surgery. I was spared the now known complications each have presented. I made a decision that minimally disrupted my career and mothering of a very active 9 year old daughter. I returned to work a mere 3 weeks post surgery!!! with the rest of my body and immunity INTACT!!!! My main regret is that I did NOT have a double mastectomy at that time. Having but one breast does NOTHING to improve one’s self image or sense of feminity…to the contrary! It makes one feel like a freak! Despite the fact that I have shared a life with a very supporting husband, I actually felt intimacy became far more complicated! On top of that, fitting a matching prosthesis and special bra is a chore!!! On MANY occassions it would have been far easier to go braless or to wear a lightly padded normal bra. Bathing suits present the greatest frustration!!! If you think shopping for a normal swim suit is difficult, try shopping for a mastectomy suit!!! Not only are mastectomy bathing suits hard to find and fit to an aging body, they are also VERY expensive and rarely hide the fact that they are “special.” At this point in my life if I thought I could go through a second mastectomy surgery with little or no complication, I would do it!! But of course, Medicare with supplement insurance would hardly recognize the need and would refuse to pay any part of it. So I face otherwise joyful senior retirement years lopsided and frustrated! Since I feel very strongly about this, I invite you to contact me to support your next publication.

  16. Neda says:

    I was not aware that only 8% of women with breast cancer have mastectomies…I would have thought it was much higher. As soon as I heard I had cancer I said “cut them off”. My surgeon put all the information in front of me with several options. I changed my mind and had a lumpectomy. Sadly, all the tests did not see the DCIS hiding in my right breast…only the IDC. My surgeon then recommended a mastectomy at which time I decided on a double…if they couldn’t see the DCIS in the cancerous breast then what couldn’t they see in the other breast. Lab results showed LCIS in the other breast so I am happy I had both removed. I never want to do this again. Thank you for article. This is never an easy decision but it becomes easier when you think about your future….and I want a lot of future!

  17. Heidi says:

    I’m 6 days past a preventative double mastectomy, I’m 43 years old. I choice not to have reconstruction and am very happy with it. I still have the drain tubs in and a bit of swelling, but so far I’m very happy with how my body is recovering. I’ve had long talks with both my husband and 11 year old son about what has become our decision on no reconstruction. My son is one of my biggest supporters and a few nights ago reminded me why. I was worried that people would make fun of me now that I’m flat. I use to be a 36C, he gently reminded me that all my friends and people who care about me will not make fun of me, they will love and support me. He said “all the rest of the people don’t matter, they didn’t before and they don’t now”. He and my husband are why I choice to have the preventative double mastectomy in the first place, I was not willing to accept the high percentage risk that I was facing. I’ve enjoyed searching the web for people who have embraced living flat. Thank your for your information it’s been helpful.

  18. Marie says:

    Just diagnosed with large area of DCIS in right breast last week. Breast surgeon recommended mastectomy and my initial reaction was to opt for bi-lateral, largely for aesthetic reasons. When I met with the plastic surgeon he could not understand why any women would chose to remove a healthy breast and he said symmetry could best be achieved by altering the remaining breast after the reconstructed one has healed. This is so contrary to everything else I’ve read. I am so distraught and confused and I don’t know where to turn. Seeking a second opinion but not holding out much hope.

    • Hi Marie, It’s natural to feel distraught and confused after a cancer diagnosis. A second (even a third) opinion is always a good idea. My hope is that you’ll find someone you can trust. Someone who can put their own projections aside and listen to what’s important to you.

  19. Kristina says:

    Thank you for your posts, Catherine. On January 9, I was diagnosed with IDC Stage 2 in my left breast (I discovered the 3 cm lump-missed my mammo this summer but have had clean ones for years). I’m 43, healthy, with family history but no BRACA. As you can imagine, this past month has been a whirlwind of appointments, tears, decisions, and tears. I decided on a bilateral as risk-reduction (the usual suspects: dense tissue, my relative youth for a tumor, symmetry issues- you know the drill). I slipped into the reconstruction track but after doing so much research, seeing pictures, talking with my ps, I’m wondering if going flat is the right thing for me. I want more than anything to be able to put this behind me and move on- and a year or more of expanders, revision surgeries just feels like being stuck in this place. And the end result just looks horrifying to me, even in the “best case” photos my ps shows me. It’s odd, but until today, I’d never even considered this idea- it’s such a given to reconstruct, and my docs, though supportive, seem to wish I’d stick with a unilateral- it makes me want to scream. What about my quality of life lopsided, or with my muscles cut up? I can’t wrap my head around any of these choices, and it all just goes in a sad despairing circle (which is why I’m awake at 3 am, finding your blog). I just wanted to let you know that I appreciate the grace of your voice in this whirlwind.

    • Hi Kristina, Thanks for your note. I’m glad you found this discussion. As you’ve experienced, even the most well intentioned doctors can be tone deaf on this issue. Oncological surgeons are trained to preserve as much healthy tissue as possible. Plastic surgeons are trained to reconstruct. Going flat is counter-intuitive to both groups. Asking for something else can feel like swimming against the tide. I just want to be clear for other readers, a lot of folks are happy with their reconstruction. Reconstruction can be a great option. However, many women get railroaded into complex surgeries. In our breastcentric culture, women and doctors alike can forget that going flat is a perfectly acceptable option. Additionally, the decision to reconstruct can feel like it’s all or nothing. Like you’ve got to decide TODAY. That’s a tall order, especially in the midst of a cancer diagnosis. If you’re open to a suggestion and it’s fine if you’re not (just stop reading here ; ), consider talking with your plastic surgeon about having a bi-lateral now with the option to reconstruct later, if you so choose. Most surgeons understandably want to reduce the number of trips a patient makes to the operating room. Therefore the first plastic surgery is often performed at the end of the cancer surgery, while the patient is still under anesthesia. But, in my humble opinion, the “convenience” of this approach may cause patients to feel rushed into making a decision when, in reality, the decision to reconstruct can be made later. I’m a fan of deal with the cancer first, breasts second. This approach isn’t for everyone but it’s something to consider. Thanks again for writing, and let me know how things go.

  20. I had a BMX with a CPM (contralateral prophylactic), chose no recontruction, and no prosthetics. I had a very long list leading to the decision. Starting with: Avoid radiation; minimize the need for future surgeries or procedures; opted out of the massive reductions and future hyper-surveillance with all of the mammograms, mri’s, call backs, dread, biopsies et al that would have been required to keep the traitors that had already tried to kill me; symmetry was paramount to me. That was the short list.

    Though I thought my decisions were “out there” at the time, I have come to realize since that those who choose no recon are most of us and that is in spite of and in the face of intense pressure by too many in the medical profession who shame, bully, coerce and even question the sanity of their patients into recon. I care not a whit what each of us decides. I just want that decision to come from our hearts and not from outside pressures. In the nearly 5 years since, I have been surprised how many of us there are living flat and even more surprised at how easy it is to fly under the radar because very few people notice and even if they did notice, do not care. We even now have a group and a website for those living with no recon whether or not they wear breast forms. I am a member and supporter but not the owner.

  21. Tracy says:

    I was just diagnosed in March 2015 with both LCIS and DCIS in the left breast. I have come to the conclusion that I want a double mastectomy and no reconstruction. My surgeon has suggested a lumpectomy with radiation, however there are more suspicious cells in the same breast and if they are cancerous they would do a mastectomy automatically. I really am at peace with being flat. I have seen pictures and this does not bother me. My sister had breast cancer in 2002 and had one breast removed just to find 8 years later the other breast had cancer. She wishes she had done them both at the same time. Thank you all for your comments. It makes my decision easier to know there are others in the same boat.

  22. Toni Smolka says:

    I was diagnosed with DCIS in March in the right breast. It was very small, and I am BRCA negative, but have a lot of other cancer in my family with a strong family history of breast cancer. I have decided to go with bilateral mastectomy because I’m only 41. Both my cancer surgeon and my plastic surgeon recommend bilateral mastectomy. I have been leaning towards that the whole time anyway, but kind of felt lost after the negative genetic testing. I also felt like I was one of those women that was “running rampant” in the US cutting my breasts off. Nobody has a problem with reduction or enhancement, why is it a big deal to take them off? I was thinking of reconstruction with implants. I’m not defined by my breasts, but I would like to have something there. I’m wondering what other women in my position with noninvasive cancer are doing. I don’t want to feel like I’m being rash for my decision to go for double mastectomy, but I have seen too many people I know have horrible outcomes not going that way in the first place. Give me your thoughts… Thank you

    • Hi Toni, My cancer was invasive, so I’m not in your exact position. But I can vouch for the “go with your gut” approach. I knew, in my heart of hearts, that implants were not for me. (And I wasn’t a good candidate for other types of reconstruction.) Listen to your gut. If a bilateral mastectomy with reconstruction feels like the option that will give you the most ease in your body, you should embrace it. Ignore media reports of women “running rampant” and cutting off their breasts. As I’ve discussed at length on this blog, a double mastectomy is a complicated and highly personal decision. You are the one who has to live with your decision, not the media, not the doubters, not the surgeons — you.

    • Margaret O'Reilly says:

      Toni – I have just been diagnosed with Stage O breast cancer. Huge family history of breast cancer – mother and 3 of her sisters (2 died from breast cancer), 5 female cousins (4 died from breast cancer). Am having genetic testing, but even if I don’t have the BRCA gene, clearly there is a family mutation. I have already decided – in consultation with doctor – to have bilateral mastectomy and reconstruction.

      Just had my best friend tell me I’m ‘doing too much,’ ‘doing the wrong thing,’ ‘overreacting.’ I tried to explain to her my reasoning and that I have made a very informed, considered decision, not based on fear, but based on what is best for me now and in the long term. She knows that I am a analytical, methodical person, but I feel like she just isn’t hearing me and isn’t showing any support. I love her and she’s a good and decent person, but she does tend to project her fears on others. I don’t need her to agree with or like my decision, but I thought she could support me as I would support any decision she would make if faced with something similar. Luckily, I have other friends who completely understand the decision, and my mother – having gone through a mastectomy, radiation, and chemo with all of its long term side effects – has been so supportive.

      I am also not defined by my breasts and don’t want my to spend the rest of my life (I’m 52) waiting and worrying about the other breast.

      • Dear Margaret, Thanks for your comment. Given what you’ve shared, it sounds like you are making a brave, educated, informed decision from a place of integrity and strength. That’s the best any one of us can do.
        XO,
        Catherine

  23. Cathryn says:

    Hi, I am in the same boat. The surgeon gave me a good diagnosis initially that he thought I had 96% of no recurrence if I had a lumpectomy with radiation. We thought I was in stage one. My sister survived all of that so I knew I could. He told me to choose between that and a mastectomy without radiation. It turned out I was still not in the clear after three surgeries attempting to get the margins clear (no one ever told me it could take that many; I thought maybe a second surgery at the most.) So I am going in for a double mastectomy now. Still pondering getting reconstruction but doubting I’ll go there. What are my reasons for choosing double? My cancer was literally undetectable until it was too late and I was already stage two. It would not show up in an ultrasound or mammogram and I did not find the lump initially because it did not present itself felt during self exams until after it had already spread into tissue underneath. This could happen in the other breast as it did with my mother. I’m done playing footsies with attempting to keep looking good when my life is at stake. If I’d known what they figured out after the third try I would have done a double mastectomy in May and been done with radiation by now. I don’t know that the health risks for reconstruction are what I am willing to deal with so I may join the flatsy club after being a 36 D all these years. It should make my bra purchases much easier.

  24. Cathryn says:

    Also, I got so busy serving dinner I accidentally forgot to thank you for the awesome blog topic.

  25. Cathryn says:

    Hi, I’m back.

    Returning after my double or bilateral mastectomy surgery and pathology report. It turned out my other breast, the one they thought I was needlessly removing, also had cancer, which was undetectable in self exams and in the mammogram I had only a few months ago (just like the breast cancer was undetectable in the other breast.) I don’t think I’m the first person this has ever happened to.

    So you see, it is not necessarily panicking to make the decision to have a double mastectomy. My surgeon congratulated me for making the right choice when he got the pathology report.

    I’ve also decided against reconstruction. I just don’t want any unnecessary surgeries. I’d rather think about recovery and staying healthy right now. Besides most of my clothes still fit me. They just look a bit different and no one has noticed my chest is flat (I haven’t even gotten a prosthesis yet.)

  26. Donna says:

    I am so relieved to read this – thank you! I was diagnosed with stage 4 inflammatory breast cancer in November, and my surgeon pushed back so hard when I asked her to remove both breasts, I thought that I was the only one in the world who wanted to avoid the lopsided look! I have found an ally in my hospital’s breast care coordinator, who set me up to meet with a sympathetic plastic surgeon next week and assured me removing the other breast would be covered. I just wish I could get it done NOW instead of waiting until the treatment is done because life with a single 34D breast is complicated, and I am tired of feeling freakish.

  27. I have Stg 1 IDC in my L breast, Surgeons saying lumpectomy w/ radiation and 5 years Tamoxifen. Genetic tests neg for BRAC. My concern is radiation, and the Tamoxifen as I had mesh implant 3 years ago and my GYN was very emphatic that “the mesh must be kept moist”, of course now Premarin cream is contraindicated. I feel that taking the Tamoxifen will increase risks of mesh complications. Therefore I am strongly considering bilateral mastectomies, but feel I might be over-reacting. My surgery is scheduled for 11/16, I hVe not yet made my final decision.

    • Cornelia — Yours is a complicated case. I would encourage you to ask your oncologist if a double mastectomy would negate your need for Tamoxifen, as that was not the case for me. I had a bilateral and was put on Tamoxifen for a year. These are incredibly difficult decisions!

  28. Alana says:

    Thank you for this website, thank you for your candor and responses out here. I’m 47, diagnosed with ILC in July 2015, just finished chemo and am looking at BMX next month. From the beginning I’ve felt that I wouldn’t do reconstruction. My husband and I discussed it and he’s been on board with it. My onc and breast surgeon bother support my decision, however, wanted me to talk to a PS so I’d have all the options. Talked with the PS, and he claims implants are viable, but if they were to go in after the expanders and radiation and find too much damage, the expanders would come out and then I’d go flat. Well, that wasn’t a choice I wanted to consider… For me, months of expanders being inflated, one deflated for rads, then re-inflated, and then possibly not being able to do it at all and having another surgery to take out the expanders! I’m going with my original gut decision. BMX, no recon. Get back to healing and life again. I also didn’t want the constant anxiety of mammos, etc..

    To everyone out here, warrior on! Thank you Catherine Guthrie for putting this important topic out there for others to come to and not feel alone…

    • Thanks so much for your comment Alana. Sounds like you explored all the options with an open mind, got the best information from smart doctors and went with what felt right. That’s the best case scenario. That’s my wish for all women. To get clear, accurate information and be able to go with what feels right for them, their bodies, their loving relationships. Just because a plastic surgery option is viable doesn’t mean it makes sense for who you are and what you want for your life. Sometimes yes, but sometimes no. So glad you have a strong sense of who you are and what you want plus a loving partner to support you.

  29. CharlieGirl says:

    I was recently diagnosed with Stage 3 MDC – three tumors and 5 to 6 lymph nodes involved so far. My annual mammograms were all normal, then I felt a lump a couple months later. The large one is over 5cm. My entire medical team is in agreement that a mastectomy is a given. The other side shows completely clear in the MRI. We started with chemo to stop the spread, and that has given me time to consider surgery and reconstruction options. I have EE sized dense breasts, so I know that I could end up extremely lop-sided and I have no interest in that. From the beginning I have wanted to take them both off. Now that the other side shows clear, I find myself trying to justify my opinion and determine if I am just in reaction mode. I have interviewed several women who have been through this and the only ones I find that express no regret are those who had BMX and no reconstruction. I am very lucky to have this extra time to consider all options and I really, really appreciate your article and all the women who have chosen to share their experiences. Like Alana I will also have to have radiation therapy after surgery because of the spreading that has already occurred. My fear is that it got so out of hand on one side before I discovered it, how do I guarantee this doesn’t happen again? A very close friend is also going through this as she was diagnosed a couple months before me. They started with surgery for her and she had to make decisions very quickly. Too quickly as she now has lots of doubts and regrets. Your point that the focus really needs to be on getting women ALL the pertinent info and facts is right on target. They also need to be given some time to digest and realize that they have that time – even if the cancer is spreading – there is time for consideration of these life altering decisions. Thank you so much for this forum!

    • Thanks for sharing. Yes, we need to insist that doctors give us time to make clear, informed, and heart-led decisions. In some cases, women need to make immediate decisions. But this is not the case for most breast cancer patients. In most cases, the cancer has been growing for years. A couple of extra weeks will not alter the disease’s trajectory. Women need time to explore options, gather information, and dial in to their intuition. I’m glad you have this time to think.

  30. Ree Watson says:

    Hi, I have just found this wonderful site.
    Today I visited a genetic surgeon, to discuss my options regarding a mastectomy. I was diagnosed with stage 3 inflammatory Breast cancer in October 15. I am about to have my 7th round of 8 sessions of chemotherapy before surgery in early May. My consultant told me I would need a mastectomy of my left breast and removal of lymph nodes. I too like all the other wonderful ladies here have all of the same feelings of looking lobsided, but mostly about the cancer returning in my right breast. I had made my mind up about going ahead with a double mastectomy, although now am totally confused/messed up!!!! Due to a breast reduction 7 yrs ago I already have scares, although ‘good’ ones, and have been informed that healing could be affected.
    I am also not able to have the reconstruction at the same time as the reconstruction because of the need for radio therapy.
    Is there anyone out there who has experienced something similar???
    How does the reconstruction work with a removed healthy breast and differ from the other one?????
    Thank you xxx

  31. jo says:

    Hi yall am I the only one having problems finding tops to wear since my double mastectomy? I hate the bras with inserts They weigh so much and are so uncomfortable-I just hate going out in public anymore Maybe its just my phobia Thanx and Love Yall

  32. Ann says:

    Hello, In 2003 I was diagnosed with IDC while undergoing a PET test for a lung nodule. I had recently had mammograms and a clinical exam that showed everything normal. The tumor was over 2.5 cm. My mother, grandmother,and two aunts (mother’s sisters) all had breast cancer. I knew it was just a matter of time for me. I told the surgeon that I wanted them both off but let him talk me into a lumpectomy with A/C chemo and radiation. He said that he did remove healthy breasts. The radiation shrunk the affected breast so much that I have to wear a prosthesis on that side. In 2007 I was diagnosed with uterine cancer and had to have a TAH, The doctors said that the chemo could have caused this. That same year, 2007, my husband was diagnosed with GBM brain cancer and passed away in only three months from diagnosis. It was and still is very hard for me to live without him.
    Moving forward to April 2016. An abnormal mammogram, ultrasound, and biopsy has revealed IDC and ILC in the same breast. I have insisted on a bi-lateral mastectomy and pray that my nodes will be clear. Due to past surgeries and my overall health, a reconstruction with implants has been suggested. It’s a big decision and I do not relish the idea of complications and repeat surgeries but as others have stated. There is quite a bit of pressure on a woman to have reconstruction if she is single and hope to ever find a mate again.
    I do feel that I would be back to normal functions if I did not have the reconstruction.
    Thanks to all who post. It helps to know what others have faced and how they handled it.

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