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Preventative Mastectomy

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amermaidonland
amermaidonland Member Posts: 2
edited February 2022 in High Risk for Breast Cancer

I was hoping to connect with some other women who have made the decision to have a preventative mastectomy. It's a decision I am in the midst of making, my family did not test positive for any gene mutation but I'm being informed that my risk is just the same. I would love to hear from other women what they went through and thought about. Or if anyone can recommend any forums, groups, chats, zooms that would be helpful! Thank you!

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  • moderators
    moderators Posts: 8,052
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    Hi amermaidonland,

    That is a very difficult decision. There are a great number of people on the boards discussing this. You may want to try typing "prophylactic mastectomy" or just "prophylactic" into our Search on the left to best find all the different conversations. We have this section on Prophylactic mastectomy as well. You may also want to look at the website FORCE for their information.

    Wishing you the very best, and keep us posted!

    The Mods

  • sasamat
    sasamat Member Posts: 43
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    Can you say a bit more about how your high risk situation comes about?

    Context for my question: it feels like when you get a risk number that's x% (meets some definition of "very high"), the medical system interprets it one way if you have BRCA 1 or 2 (recommends prophylactic surgery, screening with MRI, etc.) and potentially another way if it comes from combining several different risk factors (sometimes they say the risk is overestimated, less pro-active posture re: intervention or monitoring).

  • amermaidonland
    amermaidonland Member Posts: 2
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    Hi! Yes, I'd be happy to expand on that. I've been informed by my oncologist that my risk is 53% within my lifetime. This is based on some extensive family history as well as my own medical history. I had my first lumpectomy at 35 and then another a year later. All benign but I'm being advised that this isn't normal and that my risk is similar to a person who has tested positive for a gene mutation. The options presented to me are 1) monitoring, healthy lifestyle, and tamoxifen; or 2) prophylactic mastectomy.

    I'm trying to wrap my brain around this decision and what I need to consider. What do other women think about, how do they feel afterward, and what happens that you don't think about till after the surgery? I'm trying to connect to anyone I can and soak up every piece of info I can.

    The force website looks like it will be helpful too!! Thank you for the recommendations!

  • ctmbsikia
    ctmbsikia Member Posts: 756
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    Age? That may help if others see, can relate, and possibly share with you. I would use that as a highly weighing factor if it was my decision. I'm sorry you are faced with such a decision. Sorry I didn't have much advice for you, it was hard enough decide after being diagnosed. Best wishes to you.

  • beesie.is.out-of-office
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    "I had my first lumpectomy at 35 and then another a year later. All benign but I'm being advised that this isn't normal and that my risk is similar to a person who has tested positive for a gene mutation."

    If I may ask, what were the results of these surgeries? I had an excisional (surgical) biopsy at 16 and another at 24, both for fibroadenomas. Those are common lumps in young women and don't increase breast cancer risk to any great extent. But if the finding had been a high risk condition, ADH or ALH or LCIS, for example, then future risk is definitely increased. In my case, although I've tested negative on genetic testing, my high risk is attributed to family history - there is enough cancer that the assumption is that there's some as yet undiscovered gene causing it - and because more than 2 decades after my fibroadenomas, ADH was found when I had another biopsy. That finding led to yet another excisional biopsy that did in fact discover breast cancer. But those first two 2 surgical biopsies (effectively lumpectomies but for the purpose of a biopsy) never played into the risk estimates from either my MO or genetic counsellor.

    Certainly if your risk is 53%, that warrants serious consideration of a BMX. And as ctmbsikia mentioned, your age is a factor too. This is such a huge decision that I'd also suggest that you may want to get a second opinion either from another MO or a genetic counsellor.


  • sasamat
    sasamat Member Posts: 43
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    To echo @Beesie, did either of the excisions show ADH or ALH or LCIS?

    I've got a lifetime risk that's lower than yours (~43%) but still considered high, coming from age (just turned 50) + extremely dense breasts (birads D) + family history (mom, bilateral) + biopsies (one of which was revealed to be ADH). The ADH was strongly ER positive. So I've chosen to go on low-dose tamoxifen. I don't think anyone here (BC Canada) would consider doing anything else at this point and I'm OK with that. But I have definitely contemplated what else would have to happen before I started seriously asking about prophylactic surgery. That probably doesn't help you much, except to say that it's a tough call.

  • DiveCat
    DiveCat Member Posts: 290
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    Hi there!

    I had a prophylactic BMX in 2014, when I was 34. I also did not test positive for any mutations (as was being tested at time, I have not had further testing for other discovered mutations etc or more advanced testing since) but my lifetime risk was assessed at around 40% due to various family and personal factors.

    For me it was absolutely a choice I knew I wanted to make. Breast cancer diagnosis' have not worked out well in my family even when caught “early", and that includes my mother dying after metastatic recurrence a couple years after my initial surgery. It was a huge stressor for me knowing I was approaching an age (40s) my family members were diagnosed, as was the testing anxiety from screening.

    I would say I went into it rather prepared so I don't think there were any “surprises" for me, but it is a significant decision to make. You lose sensation, risk complications, may need more surgeries (I am going for my 5th one - another fat grafting - next week), and so on. For me the relief I had was worth it, even knowing my risk is still never going to be 0 of course. Options have also gotten better for surgery and reconstruction.My sister also has a PBMX in late 2019 (she was 35) and it's pretty amazing how far things have come even in five years technique and preference wise.

    I am happy to share further details if you want, send me a PM :)

  • DiveCat
    DiveCat Member Posts: 290
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    sasamat said:

    “So I've chosen to go on low-dose tamoxifen. I don't think anyone here (BC Canada) would consider doing anything else at this point and I'm OK with that."

    I don't know what the protocols are in B.C. in particular but I am in Canada as is my sister (different provinces each) and at 40% lifetime risk we were both considered candidates for high risk screening, and prophylactic surgery (or tamoxifen, if we wanted). There was absolutely no issue for either of us. That was without ADH/LCIS, etc.

  • sasamat
    sasamat Member Posts: 43
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    @DiveCat Hmm. Interesting. The overall vibe that I am getting is that my desire to pursue a high-risk screening regimen and low-dose tamoxifen is regarded as ... unusual and very vigilant (but well within medical norms for peer health systems, even within Canada). I definitely sense that if I were just passively accepting what the system offered ... I'd be getting my next mammogram in about a year. Probably/maybe no ultrasound, definitely no MRI or tamoxifen.

    Officially, BC has no high risk screening except for hereditary cancers. However, once you get into the system and start talking to clinicians, there is clearly some leeway, even for people with no known genetic risk factors. But it feels like the onus is on you to educate yourself and ask for more. Maybe that would even extend to PBMX? I have not even tried to have that conversation.

  • maryscout
    maryscout Member Posts: 10
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    Hi There,

    I had a double mastectomy with diep flap reconstruction after being designated high risk because of ADH and ADL. Was only initially detected in one breast, but the biopsy after the mastectomy showed it in both. No family history to speak of, but that's because both my mother and her mother died from other causes when they were around 40 years old (I'm 56 now).

    I went to NOLA for my surgery, and I could not be happier with the results. I know that this decision is not for everyone for a variety of reasons, but for me, it was a great decision. If you ever want to talk, please feel free to DM me.

    Yours,

    Mary

  • Rosemarysgranddaughter
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    Hi mermaid,

    I am a week and a half out from my PBMX (actually had it the same day you posted this). I’m mutation negative but have a strong family history (mother & grandmother pre-menopausal BC, maternal aunt post-menopausal). It took me many years to come to this decision, but what ultimately brought me here was two things: losing my aunt to a recurrence of her stage 1, “caught it early” cancer that we all thought was history; and then having a lump scare a few months later where I spent two weeks absolutely terrified that I had missed my window to remove this tissue from my body before it tried to kill me. After those two events, plus reading here about all the people whose cancers were missed by imaging or grew rapidly in between imaging appointments, I decided that the heightened screening I had been doing felt too passive, and I needed to be proactive. My doctor had recommended a five year course of tamoxifen for me (I’m 42), but knowing that many people struggle with the side effects of that drug, I decided I would rather go through the surgical route and be uncomfortable for a few months than potentially spend 5+ years feeling bad.

    So far, I feel really good about the decision. I chose to do immediate reconstruction with over the muscle tissue expanders which will be swapped for silicone implants once I reach the right size. The surgery went smoothly, and my pain levels have been easily controlled and minimal. My mobility has been quite good so far, I think largely because my pectoral muscles weren’t cut and also because I had no node surgery. After the first few days it’s settled into a combination of tightness/mild soreness that’s unpleasant but tolerable. I’m taking it one day at a time, doing my PT exercises, and reminding myself to be patient and have faith that things will continue improving with time. And most importantly, when my surgeon called to tell me that the pathology report from surgery was clear, the relief I felt was like a physical weight leaving my body. Of course my risk will never be zero, but knowing that I’ve done everything I could to protect myself from this disease that laid waste to my family is incredibly reassuring.

    Best of luck with your decisikn

  • rebzamy
    rebzamy Member Posts: 49
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    I was in my thirties when i was diagnosed with HER2+ invasive ductal carcinoma with widespread DCIS in the same breast. I went through treatment and subsequently had a prophylactic mastectomy a year or so later - no brainer! My mum's sister had it and so did my dad's sister. My consultant completely agreed that it was the right thing to do.

  • Maryjogee
    Maryjogee Member Posts: 12
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    I’m new here, too. I am 57 yo, in for BMX 4/13/21, expanders, etc. I’m BRACHA Neg but Mom 2x BC (one premenopausal with MX) maternal AND paternal aunts. My doc suggested to me 25 yrs ago to think abt prophylactic BMX and I was shocked and horrified. two ALH excisions, numerous rides in the MRI tube, stereotactics, all the screenings available...it boils down to I’m tired of being afraid awaiting every diagnostic test result, and ready to reduce my risk as much as possible. Not the right decision for everyone, but the only responsible one for me, to enjoy my Husb, kids and maybe some grandkids some day. I will miss my set but they are no longer very awesome, lol, and I am trying to focus with being Blessed to be able to make this decision. My late femIle family didn’t have this option. Good luck!

  • chicagonellie
    chicagonellie Member Posts: 1
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    Hi there - I'm new here as well. I'm 39, recently diagnosed with ADH in one breast following a needle biopsy and surgical excision. Prior to this ADH diagnosis, I was at 34% lifetime risk due to family history (sister died of metastatic breast cancer at age 36), plus I have extremely dense breasts.

    I too am struggling with the decision to either a) start taking tamoxifen and increase screening, or b) have a prophylactic mastectomy.

    It's been awful trying to get advice from the medical community here. I'm in Chicago and I've been to doctors at both Northwestern and the University of Chicago. I've been going to NW for about five years now for mammograms, MRIs and my recent surgery, and have loved the medical team at the Prentice Maggie Daley Center. However, after the oncologist at NW didn't even want to discuss taking a low-dose tamoxifen and wants to start me at 20mg (which I'm terrified to take due to the side effects), I wanted to get a second opinion. The oncologist at UIC said that 5mg will do just as well, plus they want me to join a study where I'll be screened with MRIs 2x yearly, which would be great. However, I was at the UIC facility yesterday and did not get a good first impression. In fact, I had to reschedule my visit because the surgeon I was to consult with was running nearly two hours behind.

    Oddly, nobody I've spoken with has agreed that a prophylactic mastectomy could/should be a consideration. This includes my oncologists and my breast surgeon at NW who removed the mass. Actually, they have all said that it would be a radical decision (meanwhile, I'm thinking, "just cut them off so I don't have the anxiety for the next 50+ yrs)! Therefore, I'm still searching for a surgeon that is willing to talk with me about this possibility.

    So, amermaidonland, I guess that I'm in the same boat as you with gathering as much information as possible and struggling with the decision.

    And, sasamat, are you currently taking 5mg of Tamoxifen? What are your side effects, if I may ask?

    Thanks gals!

  • sasamat
    sasamat Member Posts: 43
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    chicagonellie

    Yeah I'm a couple months into 5mg/tamoxifen per day. If I have side effects, they are pretty subtle and very tolerable. Definitely a bargain I am willing to strike for a possible 40% risk reduction (i'm looking at 40-45% lifetime risk at this point). The one thing I've noticed is maybe some temperature regulation issues (mini hot-flashes?) but, if they're real, they are very manageable so far.

    With the GIANT caveat that I have not experienced breast cancer treatment, chemo, mastectomy etc.... I do feel like there is a great reluctance to proactively treat women that are clearly at high risk. As I've said in another thread, it feels like you go from "yeah you're very high risk but it's too early to take them off" to "yeah you have cancer but the horse has already left the barn (or not) and there's no point in taking them off". This, of course, points to how blunt an instrument prophylactic mastectomy is. But I can't help but believe there is some very male-influenced thinking here about breasts and the cost-benefit analysis of removing vs. conserving. It's incredibly personal and I do process a lot of advice with a huge grain of salt.

    I have two close friends who also have a mom with breast cancer (one's mom has survived, the other did not, mine is still alive). They are also both physicians. And they both, like me, are very, very open to the idea of preventive mastectomy.

    My next mammogram is later this month and it will be very interesting to hear how things look.

  • Maryjogee
    Maryjogee Member Posts: 12
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    I like you have a horrendous family hx, and dense breasts . I am older than you but am very much at peace with my upcoming 4/13 BMX. I am BRACHA neg but am tired of being scared. Hate the upside down bed and the tube, I am done. Good luck

  • Rosemarysgranddaughter
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    Hi @chicagonellie! I had posted above but figured I’d comment again since today I’m four weeks out from my PBMx. A couple questions/thoughts:


    1. Is your sister the only person in your family to have BC? Obviously hers was very early and very aggressive, but from my experience, insurers definitely and doctors most likely will look for more evidence of your risk in order to approve this surgery for you. In my case it was my mother, maternal aunt & maternal grandmother all with BC (including my mom and grandmother both pre-menopausal) and it was still a bit of a process to find the right surgical team. (And by the way, literally every doctor I talked to along the way was female.) When I spoke to Memorial Sloan Kettering in NYC they said they only do prophylactic surgery on people with known mutations. My insurer’s criterion for family risk absent a mutation was 3 family members. Obviously your ADH diagnosis changes the picture, but I don’t know by how much.

    2. It is a hugely impactful surgery. I tried to prepare myself mentally and physically as best I could, but there’s no way to know what it will feel like until you’re in it. My nipples/areolas turned dark brown and scabby before healing. My drain incision sites still hurt randomly even though my last drain came out almost two weeks ago. I have no sensation inside the outer perimeter of my breasts; they just feel like this weird uncomfortable weight on my chest that isn’t part of my body, because my brain literally doesn’t know anything is still there because the nerves are gone. I chose over the muscle expanders to implants as my reconstruction, and the expanders are pretty miserable. Temporary, but quite unpleasant while they’re in there. At four weeks my right side feels pretty good as far as normal range of motion, but my left side is persistently tight and sore, and when I do PT to try to stretch out my chest muscles, I end up sore with all kinds of twinges and pangs. The expanders are sutured to my muscles and they do not like to be moved too much. And I still have two months before my exchange, then the healing from the exchange, then trying once again to rebuild my physical mobility and strength... it’s a long and tiring process. Meanwhile my cousin who chose a direct-to-DIEP recon has had a really tough recovery with substantial complications, despite nothing in her health profile presenting an increased risk for slower/tougher healing.

    None of the above is a reason not to pursue it... just information to chew on. For myself, I know for a long time I thought of mastectomy as a cozy, magic no-cancer bullet; it wasn’t until I got close to scheduling my surgery date that I really started to understand what a significant surgery it is. The size of the area involved (collarbone to armpit to halfway down the rib cage, across the entire chest) and the location (over one of the major muscles that operates the shoulder) make it a long recovery even if you opt out of reconstruction.


    Good luck to you!



  • Skeet69
    Skeet69 Member Posts: 7
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    i am brca2 positive with high number of related cancers in my family. I decided to get prophylactic mastectomy and immediate expanders then silicone implants. Scheduled for February 1, 2022. Once that is healed i will get hysterectomy. Went through endoscopy to check for pancreatic cancer which was negative. I am 69 so diep flap wasnt an option for me.

    Appreciate any advice. My husband is worried about helping me out of recliner. No idea what to expect when i get home from surgery.

    I am a little nervous and scared.

    Thanks!!

  • minustwo
    minustwo Member Posts: 13,116
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    Skeet - I had BMX with expanders, then exchange to implants, then two years later a recurrence that required ALND. All of this started when I was 67. The only real help I needed was with the drains. I'll find the sugery thread & post it.

  • minustwo
    minustwo Member Posts: 13,116
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  • moderators
    moderators Posts: 8,052
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    Skeet69, welcome to BC.org. We're sorry you have to go through this, but gad you found us! As you can already see, this is a wonderful group of people willing to assist whenever needed. If you have any questions for us please do get in touch.

    Warm wishes,

    The Mods

  • farmerlucy
    farmerlucy Member Posts: 596
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    I had preventive mx ten years ago, then total hyster a couple years later. Neither was particularly rough, though at this point (62 yrs) I'd skip the recon. Only needed help. w dressing changes and washing my hair first week after mx. Went home day after open hyster. No issues. Just took it easy.

  • Skeet69
    Skeet69 Member Posts: 7
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    thanks so much! My dmx was postponed from February 1 to February 24 as my ps has covid. Trying to avoid covid while i wait. Lots of anxiety, which i am prone to anyway. Just want to be on the other side of surgery. And now i find out my son's in laws are coming for an overnight 2 days after my surgery. Not sure why that bugs me, but it does.

  • Skeet69
    Skeet69 Member Posts: 7
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    just tested negative for covid. Praying all goes as planned. Pdmx with expanders on 2-24. One night in hospital since we live 120 miles away. Super anxious. Kind of weepy.

    Did find out we are going to use allergan gummy implants if anyone has suggestions or anything.