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double mastectomy with/without reconstruction

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Hello! I'm 62 years old and diagnosed with triple-negative invasive breast cancer StageIcN0M0. Currently, I'm under chemotherapy for 8 cycles/24 weeks and I'll have the last cycle of the chemo next week. After I finish the neoadjuvant therapy I will have a double mastectomy in late June since it is triple-negative breast cancer and I have a family history. My surgeon strongly suggested I have a mastectomy with reconstruction even though I originally planned to have a mastectomy without reconstruction when I saw my surgeon this week. Now it's a bit hard for me to make a decision (with or without reconstruction). I would like to hear your opinions and experience. Especially what was your experience/feel if you had a double mastectomy without reconstruction? Thanks.

Comments

  • txlorelei
    txlorelei Member Posts: 68
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    I had been leaning towards going flat but decided for sure when the plastic surgeon recommended against using implants after radiation. I knew I did not want any sort of flap.

    It’s now 6 months since my second surgery and I’m happy with my decision. I was an A cup before, so I took advantage of the opportunity to go up to B size prostheses. They’re fairly comfortable but I usually ditch the bra once I’m home for the evening. The local boutique provided me with 4 pocketed bras (covered by my insurance) but I found the “Joy Bra” from Amazon to be more comfortable.

    Good luck on your surgery.


  • serendipity09
    serendipity09 Member Posts: 769
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    Lindsayz- Did your surgeon say why he/she recommends you have reconstruction? Not that I'm asking you post here, but I'm really surprised. My surgeons and the second opinions I had, never made a recommendation and respected that it was a personal a decision for me to make. However, my nurse navigator made me feel terrible during one of my last chemo treatments when I told her that I was choosing to have a double mastectomy and she responded with "well, we don't recommend removal of a healthy breast blah, blah, blah..." I was in tears. I felt violated. It's already hard enough to go through what we've gone through and have to make a decision on loosing a part of our body, for someone then to come and make you second guess yourself.

    I say go with what YOU want.

    I'm sorry you are having to go through this.

  • katg
    katg Member Posts: 218
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    I am a BRCA2 women and small breasted, so my tumor gave me two choices. My friend did not have reconstruction. She is stage 4. I am stage 2. My City of Hope doctors said i was a candidate for reconstruction. Oddly, we did not cover more than two types. Likely cause i was staying my same size. No upper cup sizes for me. I got skin sparing. By gosh if i did not have my nipple area gone, both look the same. My right will go once my blood clot is gone. I really did not know which i wanted, but what am getting works and my doctor did a good job.

    Honestly, I never had the thought i cannot lose my breast. I have cried after i got the one removed, knowing the other would go too. And the last person likely to touch my remaining one is my plastic surgeon. For me, if this will cut my chance for reoccurrence down, I will do it. Having reconstruction makes me feel good. With cancer treatments, that is good.

  • blums8
    blums8 Member Posts: 18
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    Hi all,

    I am a 65 year old woman diagnosed with triple negative breast cancer in late December. I started treatment in February. I finished my first 12 weeks of Taxol, Carboplatin with Keytruda, and I have had 1 infusion of my second protocol; Keytruda, Adriamycin, and Cytoxin. I am leaning towards going flat and appreciate the input from all of you. I know that it might be difficult at first but I want the least amount of surgery that I can have. I will get prothesis and see how comfortable that is. I don't know yet if it will be single or double. I do not have any genetic markers. even though I am leaning in that direction, I still have some trepidation. I am small breasted so that might help.

    Thanks,

    Janice.........Blums8

  • beginagain22
    beginagain22 Member Posts: 100
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    Lindsayz

    I am 48 and had a DMX with a flat closure in March. I was going to have a lumpectomy but my genetic test came back with a mutation. So I had the DMX and have been very happy with the results. My Oncotype was low, so no chemo or rads. The Armidex has not been a picnic but I am very happy with my surgical result

  • castigame
    castigame Member Posts: 336
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    I can only speak from my experience. The breast surgeon did say lumpectomy would not look decent at all as well as no immediate reconstruction. So it was DMX with no recon for me. Yes I still have boob envy every day even after 5 yrs. Had a simple mastectomy to remove a few skin blisters of sorts. (Pathology is clear) which could have turned to be suckers. It was opening up the same surgery line and remove 12.7×2.7×1.5 cm flap. Yes this BC thing still royally sucks but glad the recent mastectomy was simple.

  • miriandra
    miriandra Member Posts: 2,105
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    I was offered a lumpectomy, but my surgeon told me that because of the shape and placement of my tumor, she wasn't sure if they'd get the whole thing the first time. So I decided to go with the mastectomy. Literally two weeks before my surgery, they had that huge recall on textured implants and expanders. (https://www.cancer.org/latest-news/breast-implant-recall-what-you-need-to-know.html) That confirmed for me that I made the right decision. Many of us can be very comfortable going flat.

    This is not to dismiss the women who went with implants for psychological or social reasons. Those are totally valid. But we don't necessarily need breasts to be women.

  • katg
    katg Member Posts: 218
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    It really is a personal decision. I would ask for pictures. Honestly. I had thought as i wrote before that with s BRCA2 mutation, that i would not be a candidate. The skin saving is really simple. Remove the insides and place an implant. After surgery. I was supposed to have radiation, so my one side removed had an expander put in. I actually hade my fallopian tubes and ovaries out, then the breast surgeon did her thing and then plastics. All in about 6.5 hours. No side effects from their work. I still have the expander as i got a blood clot. That takes from 3-6 months to treat. My expander is with me.

    I love how all of us make a different choice, with most happy. For sure once they are gone, those two are gone. For me, being small made it easier. I would say i am an A. City of Hope is a cancer center. If implants are good for me, i know they have the skill and care tp get it right. My body must do the recovery.

    miriandra and the others are right. My friend went flat and felt the same.

  • janiehs
    janiehs Member Posts: 36
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    I too went flat after a BMX. Although all genetic testing has been negative, most of the women in my family have breast cancer or have died from it. So doing the BMX was a no brainer for me. And like others here have mentioned, i just decided I didn’t want any further surgery or recovery time. Probably helps that I was 66 at the time of diagnosis and have been married forever and my husband was ok with my decision. Plus I was never a huge fan of my boobs anyway - they were fine when I was young but the older I got and the saggier they got, the less I liked them. I wear a prothesis occasionally but mostly I just go around flat. At my age, no one is looking. I think the best thing to do if you can manage it is to make your decision, trust your gut,and then just don’t look back.

  • janewhite
    janewhite Member Posts: 49
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    I chose to go flat when my lumpectomy failed and I needed to have mastectomy. I'm fine with it.

    What made me sure that flat was the right choice for me was reading other women's stories about grieving for their breasts, when all I felt was relief at never having to wear a bra again.

    Now, reconstruction is the right choice for some women, just be aware that it's a more complicated recovery, may involve more than one surgery, etc.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I had bmx 10 years ago and don’t regret being flat. It does cut down on your reoccurrence chance, I was clear for 7 years. I didn’t want recon then, less surgeries, pain, copay, any of it. I’m retired, live in shorts and tshirts. I don’t have much hair thanks to ibrance and letrozole so get called sir sometime.

    But it’s a personal decision only you can make.

    Best wishes.

  • Blinx
    Blinx Member Posts: 82
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    I'm leaning toward going flat after my double mastectomy. Met with a plastic surgeon who didn't recommend any flap procedure due to my high BMI. Implants may be iffy due to whole breast radiation I had in in 2007, plus more upcoming radiation. But he said he'd support whatever decision I made. I had already decided that any reconstruction would not be immediate. I didn't want an extra long operation, hospital stay, or recovery period. I too am lured by the though of not having to wear a bra. Maybe a bralette or cami with lightweight inserts? We'll see. I'm meeting again with the breast surgeon to discuss options and scheduling. It looks to be a month or so away.

    The other thing that intrigues me were photos of beautiful, feminine tattoos over the chest area. Flowers, vines, swirls, and birds that kind of disguise the fact that breasts are missing. Something unexpected and visually pleasing. I don't have tattoos and never thought of getting any, but I'm tempted! Not sure if it would hurt much either, since much of the sensation will be gone. I'll keep you posted!

  • lindsayz
    lindsayz Member Posts: 2
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    Thank everyone for sharing your experience which helped me make a right decision. I just finished the last cycle of chemo and will have DMX without reconstruction in a month.

  • miriandra
    miriandra Member Posts: 2,105
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    If you decide to go with a tattoo or body art after you heal, here is a group that helps with that:

    p-Ink.org

  • idk
    idk Member Posts: 4
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    Serendipity09 said:

    (at chemo a nurse responded to her decision to have a double mastectomy with the following) "well, we don't recommend removal of a healthy breast blah, blah, blah..." I was in tears. I felt violated. It's already hard enough to go through what we've gone through and have to make a decision on loosing a part of our body, for someone then to come and make you second guess yourself.

    I’m really sorry to hear that you had to go through that. People often say such callous things and to give them the benefit of doubt, I believe they just have no idea since they can’t begin to even imagine walking a mile in our shoes - although most act as if they know exactly how we feel as well as how they would handle things. This is absolutely not true, IMO because no matter what somebody says or believes, until they live what we’re going through, they truly don’t have a clue. They can’t begin to understand and that’s how I try to give people a pass.

    Even those that work with cancer patients every day other than becoming anesthetized, I don’t think even they know exactly how they would react if they were in our situation. It’s so easy for people to spout what they think they would do yet having lived it, there’s just no way that anyone can possibly know how they will feel until they walk a mile in our shoes.

    I’ve always felt like it’s easy to gauge if a person actually cares at all by how they respond if you end up sharing that you’re a terminal patient. If someone says: yeah I could die today too - well that person to me is an ahole. I’m sorry but it’s not a contest & it’s a little different when you’ve been given a death sentence. Sure, we all have to die one day yet it’s completely different to actually know. It doesn’t make it one bit easier to prepare and in fact, after the word cancer enters our lives or at least my life, it will never again be the same. In fact, the longer I live after that word entered my life, the crazier I get, TBH. I wouldn’t say I’m anywhere near or closer to acceptance than I was when I still had no sense of mortality. Yet if I could return to a time when I had no grasp or understanding or even care about my mortality, I would do so in a heartbeat. Those days now exist like glory days. I look back and think about how great it was although perhaps foolish and careless but great nonetheless to live without worrying basically every moment of every day about the end.

    I said people that respond that way are aholes, yet I can still even give those people a pass because they just don’t know what to say. However, that is probably the most dismissive response that I’ve ever heard and commonly hear.

    I don’t think people have any idea how much their words impact our lives, unfortunately. I believe that no different from any major loss, be it the loss of a relationship, a job loss or even the death of someone - there is only one acceptable response which is a sincere and very simple: I’m so sorry. Period. I had a boyfriend years ago that cheated on me and ended up marrying the person that he cheated with and she ended up cheating on him and divorcing him. He called me and of course I could’ve had anger or resentment or a host of feelings but I really didn’t. This was when I’d never really been in that situation that I was aware of and I responded by saying very simply and sincerely: I’m so sorry. He cried. He said thank you so much because everyone else, including his family said all sorts of upsetting things but especially things like: good riddance! He just said that I was the only person to say the right thing. That’s when I learned how to respond when people share about loss.

    Another response is to ‘one up’ a person like well, you think that’s bad I’m going through such and such. Again, I don’t think it’s quite as ugly for me as someone saying that we can all die at any moment but it’s still very dismissive. And, despite the bombshell that you just shared, whoever you shared it with has already taken the spotlight. They have already put the focus back on themselves.

    I understand that sharing ‘cancer’ with another person is extremely awkward in our society. People have no idea what to say and no one has training really it seems on what the right thing to say or do actually is. It just makes me realize that there isn’t a single person, really even another person in the exact same situation that can truly know how you feel (and vice versa) since we are all unique. The world is comprised of 7 billion microcosms where the entire universe orbits each person. It’s all about me! I don’t think people can help that because first people would have to become aware of how small their world actually is and the part that they play. In each of our worlds, we are the center or the sun of that universe and everything else revolves around us.

    I’m really sorry that she said that to you.

  • idk
    idk Member Posts: 4
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    I just read an article from a couple of weeks ago about flat closure. I don't think I'm allowed yet to add a link or a photo, which was why I signed up originally, until I post a few more times. So, the article is in the Washington post and here is the title:

    Some women want flat chests after mastectomy. Some surgeons don't go along.

    Several of those who sought the procedure say they got pushback — and outright denial — from their doctors when they brought it up

    By Fran Kritz

    June 11, 2022 at 7:11 a.m. EDT

    FYI, I’m 51.

    It's a little late for that in my case although I could electively go back and have more surgery to make things neater. However, I'm not having any nonessential surgery. I realize that's probably due to fear but I'm just not going to do it.

    BTW, I had a radical double mastectomy with the removal of the axilla and sentinel nodes. Actually before that, upon diagnosis which was a total surprise, I was told that I had no more than three months and to not seek treatment. That was maybe - I get confused – five years ago. It took about a year to realize that my physician truly just didn't care and did not want me as a patient. Therefore, he told me basically to go home and wrap up my affairs. I still have a lot of resentment because since day one I've been waiting for that shoe to drop or basically waiting to die because I was told I would be dead long ago. I was told I was hopeless.

    They did a biopsy of the left breast which was entirely a massive tumor yet I still didn't know. I went for a wellness check because suddenly one of my breasts felt warm and heavy. They did a biopsy on the left breast and the axilla. The doctor told me I also had cancer in the right breast and probably a different kind.I ended up getting treatment which was extreme chemotherapy despite the doctors misgivings. When the growth stopped I immediately went for a double mastectomy but first they sent me to a plastic surgeon. The whole thing is baffling to me because at that moment the next doctor I saw was a reconstructive surgeon showing me before and after pictures. The biggest shock was when I said where are the nipples? Anyway, my old thinking was hell yes I want reconstruction and I want them to be bigger. After hearing how many years are involved, the removal of skin flaps and stretching out the skin, it may be fear but I knew I was not going to do that.

    I asked for them to do a hysterectomy as well even though I was pre-menopausal at diagnosis. That was not allowed for whatever reason. After surgery, when the pathology came back, I found that the right breast was cancer free. I was already so angry at the doctor. Surgery was seven months after diagnosis and I know that I would've opted for the equality of the removal of both breasts yet just the fact that I was told that I had cancer in both breasts by the medical oncologist (and in several other places in my body) and it turned out that my right side was cancer-free was upsetting.

    The surgeon, when she had begun anesthesia and was wheeling me out of my room says that we are going to leave as much tissue as possible for your breast-reconstruction. I recall saying hey I don't know if that's what I want! I don't want you to leave extra skin because I don't think I'm going to go with reconstruction. She just said yeah you'll change your mind. She said she had a patient with my diagnosis that didn't think she wanted reconstruction yet decided to get it done 10 years later so I'd thank her.

    What was the left is a mess. My father, I recall said you're going to need to get that cleaned up. I said how would you know? He said because he saw them or what was left. I was appalled. I must've still been out or something. So I feel very defensive but I told him then that I don't care what they did, I'm not going for any more elective surgery. It should've been done when I had the surgery but it was not. This was at least four years ago and he still wants me to have surgery for a flat closure which is why I have that article since he sent it to me. While the article doesn't change my mind, I could relate to a lot of what was shared yet one thing that was never mentioned is the monetary aspect.

    I fully believe that every arm intends to get paid. Hence, they sent me from the medical oncologist right to the reconstructive surgeon. Everything had been set up by the radiological oncologist who said repeatedly for me not to forget that after surgery I needed to go with him for my radiation treatment. After all these years I see the connections and I have no doubt that a lot of it is about money. I opted to not leave excess skin yet was basically bullied into leaving it being assured that I would want it. Think about it, do you think the surgeon truly cared one bit whether or not I had reconstruction? Her part was done with the surgical removal. I was just sitting here with a grimace on my face just thinking about the whole mess and how disgusting it really is. While it saddens me at times, I'm still pretty angry about so many things.

  • miriandra
    miriandra Member Posts: 2,105
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    Welcome IDK! I can post links, so here's yours:

    After Mastectomy - Washington Post

    I'm so sorry you went through all of that. I hope that your experience and story will help empower other women to advocate for what they actually want, and not what everyone else wants them to want.

  • jo6359
    jo6359 Member Posts: 1,993
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    I was 57 years old when I was diagnosed with breast cancer, her+ positive, estrogen negative. I went through a double masectomy, chemo and radiation. I chose no reconstruction. I still had to meet with a plastic surgeon and he supported my decision. Much to my shock when my surgery was done I discovered extra skin was left in case I changed my mind. I was extremely upset because my wishes were denied. I haven't regretted my decision to go flat. I'm 4 and 1/2 years post-surgery and I still have these bulky skin pads underneath my armpits. I was slender so I was rather surprised at the excess skin they chose to save for me. I don't like surgery so I'm not bothering to have it removed. And enjoy pressure smelling laundry if you want laundry to smoke I do understand where some women might change their mind but ultimately the decision that a woman makes at the time of her surgery should be respected.

  • Florida65
    Florida65 Member Posts: 5
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    I had dbl mastectomy last July with immediate DIEP flap reconstruction which was a horrific failure. My abdomen is horribly scared and now has huge bulge on one side with hematomas on right side and is very painful even after a year of healing.

    The left flap completely failed and after 2 emergency surgeries to reconnect arteries and pints of blood transfusions, it had to be removed—after 6 months of rotting inside me. So that’s a total of 4 surgeries and 6 months of drains hanging out of left breast. They don’t tell you they are going to remove a section of rib to get to artery-insurance claim filed called it open heart/artery surgery but they down play that. Plus they cut into abs and pec muscles to get veins to stitch together. So then you can’t use your arms for months and lose muscle use in abs and pecs. The initial surgery was unbelievably painful and I can only sleep on my back-probably forever. The reconstruction was a complete failure!

    Once tissue was deemed healthy, then we started ‘repairing’ sides called ‘dog ears’. These are big pooches of skin under each arm pit and on each hip from flap harvesting. In 5th surgery, left hip was liposuctioned to smooth it (somewhat ok, not great but better) and that was injected where flap was supposed to be. Apparently the skin shrinks when the breast flap was rotting and then removed and the only option for any type of breast is a tissue expander and implants or another flap taken from my back in subsequent surgeries. So my left breast is like a prune that has been stepped on.

    The flap on the right side did better (probably B-C cup size) -no necrosis but had huge fold where dog ear started and was very painful. It was like someone was pinching me constantly. My only goal at this point was to stop the pain. So surgery #6 in 12 months span was to lipo right dog ears on hip and under right arm. Because the size of the breast is much different, I asked surgeon to trim down the size while fixing the dog ear. That was 10 days ago. My breasts will never be similar in size or shape. The doctor said he can lipo another areas to add a bit of volume but that’ll be another surgery and another year of pain and I will still be deformed and lopsided.

    At this point, I only want the pain to stop. I’m trying to accept that I will never be physically able to do things I use to do (like gentle yoga or house chores/repairs) and that I will forever be deformed even though I’ve been through all of this pain and lost literally 2 years of my life because it’ll take another year to heal. Not the outcome I was promised or hoped for-being deformed could have been attained in first surgery. What is the point in trying to cut out the cancer to live a few more years when you can’t live normally.

    They need to be honest about results. Dr are always going to tell you what you want to hear. I didn’t want implants but I didn’t want to feel self conscious with nothing there so this seemed reasonable…as the dr. said, I would be paying it forward. Don’t believe them. Google pictures of reconstruction and talk with your dr about them but don’t believe dr when they say that’s abnormal. There aren’t any decent looking breast surgeries pictures anywhere other than ppl getting non cancer related cosmetic boob jobs/implants. I was looking for 1 and done so I could move on with life. Good luck in whatever decision you make