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Bilateral Mastectomy Club

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mavericksmom
mavericksmom Member Posts: 1,203

I would love to hear from others who had both breasts removed. I was refused a bilateral mastectomy in 2019 when I had my left mastectomy because my BS lied to me. I ended up with BC in the right breast in 2022, and had a right mastectomy that fall. I am not thrilled with my current BS but have no intention to look for yet another one, because I don't feel as if I even need him anymore.

Both my medical oncologist and BS tell me to see them twice a year. As it turns out, I see them two weeks apart in the same months. I don't see the point in seeing the BS anymore. I am on Letrozole, for how long, not sure, but will see oncologist next week. That is the only reason I see him.

Wondering how others who had bilateral mastectomies feel.

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  • maggiehopley
    maggiehopley Member Posts: 116
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    I had a bilateral mastectomy in Sept. 2022. I saw my BS once after surgery when my drains were removed, then again 10 months later when I had my port removed. That's it. Unless I have a recurrence, I will not see him again. I did not have reconstruction; I don't know if that makes a difference or not.

  • kaynotrealname
    kaynotrealname Member Posts: 417
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    I think I see mine in July which is two years out from my surgery. After that I assume I will be done. I like her, she's great, but my oncologist is who I need now.

  • flowergirl1975
    flowergirl1975 Member Posts: 57
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    I had a double mastectomy May 31st 2023. Last time I saw my surgeon was when my port was removed which was in September sometime. Next week I have a consultation with a plastic surgeon to discuss reconstruction options. Apparently there are some plastic surgeons who will not operate on a woman who has gone through radiation because it changes the skin. My follow ups are oncologist in March and radiation oncologist in June. I will rotate seeing them 3 months apart for I’m not sure how long. I will have no scans, just routine blood work I guess.

  • amel_83
    amel_83 Member Posts: 166
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    I had double mastectomy with no reconstruction in 2018.

    I had no problem other than backache that went away with exercise. The scars almost gone too, and full sensibility is back.

  • mavericksmom
    mavericksmom Member Posts: 1,203
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    flowergirl, I had DIEP reconstruction on my left breast in 2019 and had a horrible time getting the skin to heal. My surgery was in January and the skin wounds due to radiation I had back in 2003, didn't stop bleeding until August. I had large areas of skin involved. I wasn't prepared for that and my PS didn't even seem concerned. Thankfully I had a visiting nurse for several months after surgery and she advocated for me. When I had my right breast removed, I had reconstruction with an implant (DIEP is a one time surgery) and had no issues with skin because that breast wasn't radiated.

    Thank you to all who shared. My original follow up schedule was alternating every three months between the breast surgeon and medical oncologist. My schedule got shifted and I ended up with both in the same month. I saw my BS a few weeks ago and was due to see my MO on Tuesday, but tested positive for Covid last week, so I cancelled it. I think when I call to reschedule, I will make it for the end of March or April, so I can get back to the original plan. I don't feel the need to see my breast surgeon, but after having new breast cancers three times I will continue to see both doctors unless something changes.

  • katg
    katg Member Posts: 218
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    I message my breast surgeon in November and she said she sees me for 3 years after surgery. My surgery was a year ago late December. Honestly, since i had Brca2 and HER2 + with my tumor, I want to see her 4 more times. My plastics doctor i see in July. I did have implants, so I will get him to say all looks good. Tell him I still do not want nipples created or tattooed or any others created.

    I am also being watched for a TP53 gene with a genetic component found with BRCA2 that leads to leukemia. I think all these doctors stay with me. Also, to reconnect with my MO who moved to Cedars Sinai after my full treatment ended. My plastics doctor suggested staying with her as she knows my history.

    Courage, faith, a support group and laughter. Wrapped by love.

  • snm
    snm Member Posts: 95
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    In case my journey would be useful for anyone here: I provided my details on Tips for Bilateral Mastectomy with Immediate Tissue Expander AND Implant Exchange

    Please keep in mind that everyone's journey is different but I hope this might help some.

  • mavericksmom
    mavericksmom Member Posts: 1,203
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    devolnaz, you go girl!!!! I was thrilled to read your post! That is what I wanted in 2019, both breasts removed and go flat! I was told NO! I was denied a double mastectomy even though I had a second new cancer in the same breast almost 16 years apart and at the time one sister and my mother who had breast cancer. (ironically I had a second sister diagnosed with breast cancer a month after my surgery)

    I was talked into reconstruction because of being lopsided if I went flat on one side! THEN because of those doctors, specifically the breast surgeon, at a very well known cancer center in Philadelphia PA, I was diagnosed in my right breast about three years later! It had a huge negative impact on my life, and forced me to retire earlier than I wanted to! I will never go back to FCCC ever again. I had my 2022 surgery done at a local hospital with implant reconstruction and I HATE my breasts! I REALLY wish I had gone flat!

    Flat isn't for everyone, but THANK YOU for putting it out there in such a positive way!!!!

  • everythingwillbefine
    everythingwillbefine Member Posts: 35
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    I had my left mastectomy done in 2020 due to left DCIS and right mastectomy in 2023 due to DCIS again. I did not have reconstruction. I am super happy with my decision as well like flowergirl. I am recovered very quickly and can jump and run without bouncing boobs. I wear fake ones when going to work. I am a small person. I used to have B cups and now being flat I don't see much difference in my apperance before and after. I am 50 years old and feel that double mastectomy with no reconstruction is the right decision that I made and I am happy with it.

  • flowergirl1975
    flowergirl1975 Member Posts: 57
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    Hi All! How are you doing @devoinaz ? Hope all is well😀

    I had my consult with the plastic surgeon. Apparently I’m not a candidate for implants. Since I had radiation the fail rate is something like 50%. If I want boobs I have to have the DIEP procedure which does not sound fun at all, although a flat stomach sounds nice. I’m undecided what to do. It’s too soon to even think about since my treatment ended in November. I need a break…. I wear my floobs and for now I’m happy with doing that. I don’t know how I will feel in a year or more. There are things I miss about having breasts… I think it’s just a new normal to get used to. Not having breasts is a daily reminder of what I went through, I’m forced to think about it every time I get in and out of the shower. It’s just tough some days!

  • mavericksmom
    mavericksmom Member Posts: 1,203
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    @flowergirl1975 Hi! I will pass on to you my experience with DIEP for you to use as you decide what to do.

    To be clear, I asked for a bilateral mastectomy with no reconstruction in Dec 2018 when I went to FCCC in Philly for treatment for ILC. The breast surgeon there lied to me, told my husband and me, I couldn't have my healthy breast removed because it was against hospital policy, and then called his friend, the PS to come over immediately see me and talk me into reconstruction so I wouldn't have "balance issues." Understand, I was in shock because my first breast cancer in the same breast was almost 16 years earlier and I was told I was cancer free by doctors at another facility. The surgeon who lied passed away, and while I am sad about that, I will never have closure, esp. since I did end up with cancer in my remaining breast less than three years later. It is what it is.

    The PS talked me into having the DIEP procedure. The Plus side: It looks and feels like a real breast. I didn't have a nipple constructed, which would really make it look even more real.

    The Down side: It is multiple surgeries. You are cut from hip to hip, much longer than a C-section incision! You also will have a large square incision where they moved the belly button up as well as mastectomy to one or both breasts with reconstruction. * About the belly button, I asked why they moved it up and didn't just remove it and was told it was to make me "look normal."

    NO ONE gave me the option to say no, don't bother. As I told my gynecologist, I am older, will NEVER show my abdomen in public, and had been married for 40 yrs at the time, so the only one who really would see that part of my body would be doctors! She laughed. I did not! Just a little something to think about.

    It is a very long surgery. Mine was 8 1/2 hours. You are hospitalized for aprox. 4 days as they need to constantly check that the tissues in the breast are supplied with blood. I had many drains, one or two for my single breast and two for my hips, one on either side. They stayed in a long time.

    When the procedure is over you will be very swollen! NO ONE prepared me for that at all! When I first saw my body without bandages I totally freaked out and cried! I looked so bad. Just know, that with time, and by time I mean months, maybe longer, the swelling goes down. As I said, being older, mid-60's when I had the surgery, things take longer. Also, if you had radiation to your breast you could face a difficult healing of breast skin as I did. My breast had large places where the skin got black and crusty and then bled. The areas continued to bleed for seven months! I needed home nursing care because of that.

    All in all, I am glad I had it done, but regret that I didn't get a second opinion that would have allowed me to have both breasts removed. I can't even begin to tell you what I went through because I listened to a surgeon who lied to me! It did not only affect my life, but that of my family and aprox. 150 students I worked with when I was diagnosed with cancer in my opposite breast and had to retire much earlier than planned due to additional surgeries and complications. I no longer go to FCCC and would never recommend that facility. I should have sued them, but it wouldn't have changed anything. That breast surgeon made me wait until my "healthy breast" was no longer healthy! Sorry for the rant, it is still super mentally painful.

    I hope this info helps. If you ever have any questions about DIEP feel free to PM me!

  • katg
    katg Member Posts: 218
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    I had a double mastectomy. First i had one side off with the tumor and the plan to remove the other would be after the radiation. I did not end up getting radiation as that oncologist doctor said it would have no measurable return as my breast cancer is what 2 % of the population gets. If I was his family he would say do not have the treatment. So dang, my surgery was scheduled. I got to have the other breast removed because genetics said i had the Brca2+ mutation. Then Ha ha i got Covid and a blood clot was found. I was on blood thinners for 6 months, a vacation had been planned, so my remaining breast was removed 11 months after the first. I did get implants. I had skin saving as i stayed the smaller size i was. I have barbie boobs, so I do see myself every day and remember i had breast cancer. I had always been small breasted and flat with no nipples was nothing i wanted. I am 63, so if anything goes wrong with my implants, I am not sure i would replace them. I was told i may get 10 years out of them.

  • creativezoo
    creativezoo Member Posts: 31
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    @mavericksmom The schedule for when I see who was confusing for me as well. I started with left mastectomy and just had the right mastectomy with reconstruction of both sides. I waited to do the latter until after chemo/targeted therapy was finished. I was under the impression initially that I was seeing the BS every six months as well but it ended up that I will see Onco for exams. And that didn’t even start until after active treatment finished so it was like a yea later. My cancer team is interwoven in the same system so it is easy to avoid crossover/redundancy. I can’t imagine you need to see both though. Maybe you get to pick which one you like best?!

    I was able to do prophylactic mastectomy for the right side because of how aggressive the tumor was on the left. (I asked for it and they didn’t argue or have me jump through hoops and I’m sad that you had such a hard time!) By the time I was dx, staged and getting scheduled for the first mastectomy, the initial tumor had sprouted an evil twin (within 4 mths). The second tumor freaked everyone out and surgery was moved up. Got the affected breast out and went through treatment (no radiation since it was a mastectomy) with the plan to go from there. I elected to do the right mastectomy at the same time as reconstruction so I could get on with life. In recovery for that now as I type this. I can’t say how I will feel about the DIEP flap I have had done (I’m post op day 10)-it sounds like my surgery is a bit different than yours-but I can say it has been very hard. I wasn’t mentally prepared for the full scope of the situation. I am fortunate that I feel that my medical team has my back-especially my surgical team. I don’t looooove my oncologist but I trust his knowledge. I absolutely adore my surgeons.

    I will say, I can’t believe what a relief it has been to have the other breast removed. Last year I had my first mammogram on the right breast and I got called back in for an area of concern and I fell apart. As many times as a person can say “this happens all the time, it’s probably nothing” is as many times I was cynical about the positive intention of the statement. It turned out to be nothing-but the fear was everything.

  • katg
    katg Member Posts: 218
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    I was updating my breast surgeon who moved to another hospital and she told me i am to see her every 6 months for 3 years! My oncologist moved to the same hospital. Cedars-Sinai that has expanded their cancer services. I was assigned a new oncologist, but i wanted to see my Nurse practitioner who knew me for the 2 years i had been in treatment. When that NP went on pregnancy leave I was left with no direct link to the services i had walked through. Those left knew me by my chart. Chemo, Double mastectomy, Lynparza drug for a year, a blood clot my body not moving out. Having skin saving i have found was so much easier then the DIEP flap. I did get implants no bigger than my original, so the skin worked. No nipples, so that is gone two.

    Today, the thing i find oddest is the left side where the tumor was and which i had removed nearly a year before the 2nd is mostly cold to the touch. The right side not so cold. A definite reminder that these are borrowed and not my own flesh.

    Creative zoo and Mavericks Mom. geez. I believe i did not have to ask to have them remove, as they asked me was because my tumor biopsy showed Her2+ when it was removed. I was supposed to have radiation, so the left side was to come off when that was done. A cancer hospital like City of Hope that stands behind genetics to see what each body faces is my blessing. I would LOVE to have had a genetic test that said CLEAR. No, i had
    BRCA2 and an unknown variant they are not sure about. Well, my low blood numbers i was worried about, found me an answer. I was not to have a another check up till my NP came back from maternity leave in February. (My appt is the 20th) I had one blood test in September and emailed the Dr's office i saw for my blood clot that would not go away. Through them, a few more prods and calls from me, i got into see a hematologist specializing in Leukemia. The only way to see if anything was up was to have a bone marrow biopsy. I had that in Oct 2023. I have a mutation in my 5 and 7 chromosome. TP53 is off and couple all together with that unknown variant in my genetic count, I have what leads to MDS. Leukemia.

    Come on God I said. I already lost my ovaries…these out to not have ovarian cancer……..fallopian tubes and both breasts. He said but because I gave you a high platelet count and you were able to donate regularly at the Red Cross for 25 years let you know something was really wrong with your blood. You did not bounce back from treatment.

    Today, February 18, I am finding out if my matching donor, yes a complete match is available in April. The fellow is 25 and has type O blood. I will no longer have A+. The doctor alerted me in Dec there were 6 other donors who were a possible match. They used the "Be A Match" site.

    March 5th i will get an update. This Doctor is why more serious than most others. My plastics dr is a male and he is more talkative than this one. I was unable to connect my first time meeting with him on a tele-visit, so on the 13th of Feb, i was logged in for the tele-visit with all systems go and he called on the phone. Really? Nearly 15 minutes he reviewed what my path could look like. He said take 6 me's, all who decide not to do any treatment. Three of those Me's will be dead in 5-6 years as the MDS develops. The other three will live for varying years.

    I told him that the scientist doctors here at COH have studied my blood and located the mutation.

    I have BRCA2 as well as ER+ and Her2+ already. Do i really think i will be one of the three that live longer?

    I have time to change my mind, but i do not think so.
    .

  • creativezoo
    creativezoo Member Posts: 31
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    @katg geez what a horrible road for you. It seems like you’re getting kicked while you’re already down. I’m sorry you’re having to go through that. I also have one of those mutations of unknown importance so I guess I will have to wait and see if it ever becomes important. I totally understand that you’re feeling cynical about it all and get why it’s hard to keep hoping to be one of the three as you said. Maybe right now isn’t the time to be hoping … maybe right now is time for wondering why you pulled the short stick so many times. Totally get it. I’d be pissed. Hopefully by the end of the week you have some more info and you can get to feeling that hope again.

  • mavericksmom
    mavericksmom Member Posts: 1,203
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    katg, I am so sorry to read about all you have gone through and continue to go through. When you mentioned MDS, it hit a nerve in me. My oldest sister was diagnosed with breast cancer in 2004, exactly one year to the day that I was diagnosed the first time. She lived near Houston, TX. After testing her lymph nodes it was discovered that she not only had breast cancer in one of four nodes removed, but all four also were positive for non-Hodgkins lymphoma! After years of treatments, first for the lymphoma, then for the breast cancer, she developed MDS, which sadly took her life! I was told to be mindful of MDS developing because of all the radiation I had during my treatments. She was treated at MD Anderson in Houston, the number one hospital for cancer in USA, and they couldn't save her!

    My prayers go out to you. I hope you have a successful bone marrow transplant! That is something my sister wasn't able to have, although I don't remember why. Sending you tons of healing vibes! I have learned after 20 years and three new breast cancers that statistics only go so far. ONLY YOU ARE YOU! Do whatever you can that will offer you the best continued quality of life! Don't give up, even if odds seem against you. ONLY YOU ARE YOU! Your outcome does not depend on other outcomes!

  • carolehalston
    carolehalston Member Posts: 7,935
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    I had a bilateral mastectomy in 2009 at age 66. I was taking hormone replacement and felt great about myself and my life at that time. I had reconstruction at the same time as the bmx. Silicon implants placed behind the pectoral muscles. My mastectomy was skin and nipple saving. I was an A cup before and went slightly larger to a B cup. There were some healing issues and I had to go back into surgery to have the left incision redone. The left nipple was touch and go as to healing but eventually did heal.

    Recently I learned that the right implant is ruptured. A silent rupture, no symptoms. Discovered when I went for a checkup and had an ultrasound, followed up by MRI that I requested. Now I have to decide (a) have the implants removed and replaced using the same location (b) have the implants removed and new implants placed on top of the pectoral muscles (c ) have the implants removed and go flat.

    The third choice is unquestionably the safest one and I will turn 81 in March. DH assured me he would love me no less without the implants. But it isn't an easy decision. I'm wondering what keeps the mastectomy bra in place if you have no boobs and are, for example, participating in an exercise class with a lot of arm movement.

    I was no longer feeling the implants in my chest prior to finding out about the rupture. Now I'm feeling them. I was blessed or cursed with a very active imagination.

  • creativezoo
    creativezoo Member Posts: 31
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    @carolehalston For me, the type of bra that the prosthesis goes into seems to keep it in place. I have a very active job involving getting up and down from floor level, lifting at least 50lbs on my own and moving quickly in stressful situations. I thought for sure the bra/prosthesis would be all over the place - especially since I had that issue with my natural breast (in between an A and B wearing sports bras). I don’t know if it’s the weight of the prosthetic or the bra itself but it definitely seemed to stay put.

  • katg
    katg Member Posts: 218
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    A quick update. It does not pay in the implant world to live by yourself. I got a call from the nurse on the transplant team at COH. She was reviewing from start to finish what will happen. The dr wants April 1st! I just listened to her for 15 minutes. The next day I knew it is a long road for me. I do not have a 24hr caregiver. My sister who is recovering from Ovarian cancer is not able to let me stay with her. She cannot be with sick people. She was my one sibling chance. The following day on Wednesday, I message that nurse that the 24 -hour care is not possible as it is right know. I can assemble friends for a variety of days, but not someone to stay with me for 3 months. Beautiful, wonderful husband, where are you?

    The nurse will let the Dr. know. As it stands, he is contacting the donor through "Be a Match" to see when he would be available. I asked God for him to have an open window. The NP i was looking to see after her pregnancy leave decided to stay home with her new baby. My advocate through my journey has left the building. Geez. The new Dr. I was assigned had her residency in 2017. She is ready to help but questioned so quick on the MDS and asked about watch and wait instead. What? I briefly told her of my diagnoses. Did I want to wait till MDS started? Today there are no blasts. Part of me still finds this hard to believe. I am on the fence about staying with her. She thinks my left arm is carpal tunnel and has a few questions. She ordered an xray which showed mile degeneration and nothing else. She ordered a med for nerve pain, and i decided nightly to wear the arm sleeve thing my sister gave me.

    I have not heard back from the nurse. She had also said a social worker would be calling me. i know I need to check with my insurance to see if they are paying for this implant. They paid for all of my last 2 years. Will this be deemed medically necessary. About the breast, I never got an implant and so far after a year no problems. But the new Dr. ordered an US to make sure the water from last year is all gone behind my left breast.

    A sense of humor, hope and belief the right people will be there to help is essential. Lastly, do i think i am the only person of the 15, 000 COH has done that did not have a 24hr caregiver?