Should I have gone for preventive 2nd breast mastectomy

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Vgmggroup
Vgmggroup Member Posts: 17

i was diagnosed with Stage 1A breast cancer few months back and got mastectomy done on one side as there was 2 tumors in it. Second breast was all fine, MRI came negative, no family history, genetic testing also was negative. We talked to 2 surgeons about a preventive mastectomy on the second breast and was told there is no medical reason for doing it and that Tamo over the next 5-10 years will help prevent occurrence in the second breast.

Every now and then, we think should we have gone for double mastectomy instead not from cosmetic point of view but just to reduce the chance of recurrence.

Please share your experiences...

Comments

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 308
    edited January 2019

    My surgeon said for me personally the risk for BC coming back is the same whether I had a lumpectomy or a mastectomy. I assume that's because of having IDC and finding it in the lymph nodes. I could have opted for the mastectomy but decided on the lumpectomy simply because the recovery was easier. Also in my case the three lumps I had on the left side were all in a row so as the surgeon said it will be like taking a piece of the pie out. I don't regret my decision. Ii think it comes down to peace of mind. Good luck going forward.

    Make sure you put your diagnosis in your profile.

  • bluepearl
    bluepearl Member Posts: 961
    edited January 2019

    Mastectomy does reduce recurrence considerable, something in the 1% range. I was told I would have only a 5% risk in other breast, which is standard risk, and I got it two years later. I wanted a double mastectomy but they didn't recommend it. THAT said, it is rarer to get it in the other breast. With good follow up even if it does, it should be caught early enough.

  • Vgmggroup
    Vgmggroup Member Posts: 17
    edited January 2019

    thanks bluepearl, so you didn't have harmonal theraphy the first time

  • Vgmggroup
    Vgmggroup Member Posts: 17
    edited January 2019

    updated diagnosis on profile...

  • LaughingGull
    LaughingGull Member Posts: 560
    edited January 2019

    Hey

    Sounds like you got some answers on the conundrum "lumpectomy vs mastectomy" instead of answers on the "single mastectomy vs double mastectomy" conundrum.

    Like you, I had a single mastectomy, since there was no medical reason to remove the healthy breast -by which I understood that the insurance wouldn't pay for it.

    After the cancer surgery, I started second guessing the decision, particularly because my breasts are very dense and image poorly. In the cancer breast, I had a clear 3D mastectomy three months before I found my lump myself (including extension to the lymph nodes), and after chemo I had a clear MRI, still a 2.5 cm tumor was found during surgery. So I knew I would never trust any imaging of the healthy breast, and also it looked very, very different from the reconstructed breast. I discussed with the oncologist and surgeon and then I learned that I could still remove it, and that it had always been an option and that my insurance would cover it. So I had the second breast removed -prophylactically. I will look more even after reconstruction and will never get a mammogram again. I am very happy I did it. Also, before the first mastectomy, I was intimidated by the surgery ,and by how traumatic losing a breast would be, but it turned out that I recovered very quickly, I didn't miss or mourned that boob, and the boob I kept was giving me nothing but worry and sadness.

    Good luck with whatever you decide.

  • clrzink
    clrzink Member Posts: 7
    edited January 2019

    I decided to have a double mastectomy with no reconstruction, after getting cancer again after 16 years, in the same breast where I'd had a lumpectomy, chemo and radiation. There was no indication that it was necessary, nor lessen the risk. I mostly did it to be even and have less worries. was not gene positive and MRI and PET scan showed nothing. The surgeon did not plan on searching for nodes because I have lymphedema on the left side. I got the path report today. Along with breast tissue, the surgeon removed a negative node on the left and two nodes on the right. One of the right nodes had a small percentage of cancer! The surgeon and oncologist cannot believe my report, having 3 separate breast cancers. It is really unknown if they are all primary or metastatic. But. one thing for sure, my instinct to remove both breasts was definitely the right choice

  • dtad
    dtad Member Posts: 2,323
    edited January 2019

    Hi everyone...the local recurrence rate is about 2 percent. However, I did the preventative mastectomy because I had a ILC tumor that was missed on both the 3D mammogram and ultrasound. So difficulty in screening plus symmetry were my 2 main reasons. Good luck to all.

  • BrinkOfEternity
    BrinkOfEternity Member Posts: 207
    edited January 2019

    I decided on a right UMX because I was most worried about recurrence of my current cancer, and I know the chances of the cancer “jumping” over to the other breast is rar. Also I wanted to recover quickly and get everything over with. Breast MRI revealed a 2nd DCIS tumor in the same breast (that's too small to be felt) so I feel I can trust imaging.

    Removing the other breast would prevent me from getting a new cancer on the left, but that's not my primary worry.

    I have seen enough profiles with recurrence (on the same side) after mastectomy that I know I'll have to be vigilant the rest of my life anyway.

    It is a very personal decision and I do wonder from time to time the chances of me getting a new cancer on the other side, but I am comfortable with my decision still, especially since I can take hormone blockers.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    I plan on having just one breast removed. I think that recovery will be easier for me. Plus I feel safer now since I've had cancer than before cancer -- because my exams will be much more thorough.

  • CaliKelly
    CaliKelly Member Posts: 474
    edited January 2019

    I was actually kind of shocked when my breast surgeon asked if I wanted them both off! I said , well why would I?I thought maybe something was wrong that I didn't know about. I asked how common would it be to get another cancer in the opposite breast. Not common! So I opted to be vigilant and keep my other breast. Happy with my decision. P.S. did good job matching my recon breast to the good one. Just my own opinion, for me, I never considered losing the non cancer breast.

  • Mncteach
    Mncteach Member Posts: 274
    edited January 2019

    Each of us has to make the decision that feels right for us. I had all options on the table but after the mri and finding (yet) another area of concern on the non cancerous side, I opted for having both removed. Like laughinggull I have dense breast tissue and needed the peace of mind of not having to be called back after every mammogram. My surgeon fully supported it and understood my concern the entire time. Also, since I wanted to do a Diep reconstruction and not implants, It made sense to do both since Diep is a one and done chance (or at least that’s how I understood the PS).

    If you are comfortable not having the second breast removed, stay the way you are. If not, find surgeons who do understand and have it taken off. You are the one who has to be comfortable with your decision.

  • msphil
    msphil Member Posts: 1,536
    edited January 2019

    hello sweetie we were planning our 2nd marriages when I found lump. Idc stage2 0\3 nodes 3mo chemo before and after Lmast reconstruction but my body rejected the expander had very high temp fiance rush me to e r taken out. Got married after chemo then 7wks rads and then Honeymoon. 5yrs on Tamoxifen. Am now this yr going into 25yrs Survivor. Praise God. It is Possible. Wear prothesis in bra on left still have healthy breast on right. Mammogram yearly. God Bless Us All. msphil

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited January 2019

    I didn't have a choice but if I had I would have kept one breast. I'm not a worrier and it would be nice to still have feeling on one side.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Very dense breast tissue, an ILC dx (tends to be more multi-focal than other types and hides from scans) and five "clear" mammos that missed my problem decided it for me when I finally found the b.c. in my right breast-almost under my armpit--in a random self-exam. I waited a year after radiation to let my skin recover, and did a nipple-sparing BMX with immediate recon, so it was only 2 surgeries-the nipple-sparing one was in my PS office under a local, and then 7 days later after the biopsy from that tissue came back negative I had the rest of the surgery.

    I do miss the sensation in my breasts, and even have dreams where I still have feeling in them, sometimes. I suppose I'll always feel that sadness that I was forced to make a choice like that.

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