Bilateral Mastectomy?

MarielSL

Got results IDC ER/PR + HER2 - has returned on same breast 2 years later after chemo and radiation. I made the decision to stop taking Tomoxofin because of side effects and my oncologist thinks this is why it has returned. I am deciding on whether to have a bilateral mastectomy or only have it on affected breast. Looking to get some feedback on what other people have done and what influenced your decision? I do not have a family history and no BRACA gene mutation and I am 35 years old.

MarcieB

MarielSL, it sounds like you never had surgery as part of your original treatment?

MarielSL

I forgot to mention I did get a lumpectomy the first time.

ChicagoSandy

What was the original stage & grade? How extensive was the radiation (targeted or whole-breast)? I hate to say it, but the younger you are when diagnosed, the more aggressive a breast cancer tends to be. You were only 33 at the time. Tamoxifen is basically the only endocrine-therapy (i.e., anti-estrogen) option for a premenopausal woman, unless you either take an ovarian-suppressing drug (chemical menopause) or get an oopherectomy (ovarian removal, aka surgical menopause) so you can take the more effective aromatase inhibitor class of endocrine-therapy drug.

Tamoxifen blocks the tumor's access to the estrogen your ovaries make. The body can make estrogen without ovaries, but more indirectly and a slightly less potent form: fat cells and adrenal glands produce an androgen, and an enzyme called aromatase, produced by the liver, is the catalyst for converting it to a type of estrogen (estrone). Aromatase inhibitors inactivate that enzyme so the androgen doesn't become an estrogen, and thus the tumor cells are essentially starved. But if you take an aromatase inhibitor while you still have functioning ovaries (i.e., haven't gone through any kind of menopause), it causes the body to make a hormone (HCG, the pregnancy-supporting hormone) that actually makes the ovaries crank out the natural, more potent form of estrogen, estradiol.

You likely had that recurrence because by your stopping Tamoxifen, your residual tumor cells' estrogen receptors once again have free access to the estradiol your ovaries are making. (We never know if we still have residual tumor cells despite surgery, radiation & chemo, so that's why we need to try and starve them of estrogen before they can multiply & form another tumor).

I was 64, with a very early and relatively non-aggressive tumor. So I can't analogize my situation to yours, and what was right for me may not be right for you.

First thing I'd do if I were you would be to go back on Tamoxifen, period. (Side effects beat the alternative). Then have a sit-down with your medical and surgical oncologists and ask about the relative survival odds for, respectively, a second lumpectomy plus radiation (if you had targeted radiation to a different part of that breast), single mastectomy, and bilateral mastectomy (plus reconstruction if you want it). Get a second opinion from a major teaching hospital's cancer center if you can afford it.

You're only 35--with decades of life possibly ahead of you. If I were you, I'd maximize the chance to have those decades.

beachbum5817

I feel bad that you have to face all of this at such a young age, but we know that cancer doesn't discriminate. I was 59 when my cancer was diagnosed at Stage IIA ER/PR- and HER2+. Due to the location of my tumor, my surgeon did not think that he could save that breast. Since I was getting one removed, I decided that I wanted to have them both removed. It was just something that I always knew that I would do. I didn't want to have to go through it again, and HER2 is more aggressive. I have never been sorry. I also had chemo and radiation after the surgery. I wasn't expecting radiation, but after surgery I ended up Stage IIIA due to more lymph node involvement than expected. After discussing my options with my plastic surgeon, I chose to have implants. In hindsight, I might have changed that. So, explore all of your options and get as many professional opinions as you need. We are here for you to help in any way that we can. You can ask us any questions or just vent. We have your back. Keep us posted on what you decide. Take care.

junie1

Good Morning all,,, In 1994, ( I was 42) I had cancer in the left breast and they did a lumpectomy. i had radiation also, was on Tamoxifen for 5 years. All mamo's came back clean for the next 20 years. In 2014 (i was 64 then) I noticed changes in the left breast, went to a breast surgeon & he did more testing, because mamo still came back clean. they did an MRI, where It was detected that there was cancer hiding behind the scar from the lumpectomy. So surgeon said he'd have to take the left breast off..I told him.. take the right one also,, No Problem he said. He inserted dye into the right breast and during surgery it showed cancer in 12 of the lymps nodes removed from the right side,, under the arm .. THE RIGHT BREAST WAS COMPLETELY CLEAN! I went from a stage 2 to a stage 4 breast cancer! So having a double mastectomy,, litterly saved my life!!
after having surgery, i chose not to have reconstruction, and I have not regretted it at all. Even at 42 i did not have any recon done.
Wishing you luck in what ever you choose to do.

MLT

Such a tough decision!! I had lumpectomy in 2009, unilateral mastectomy 3 yrs later due to squamous cell carcinoma in breast due to radiation, very rare. I didn't have time to consider bilateral at the time. Even tho I am small busted, I didn't like being one sided, think I would have been ok with flat. I researched reconstruction, knew I didn't want implants due to radiated skin. Prayed about it, asking for guidance. I had a prophylactic mx and DIEP flap reconstruction. There were atypical cells in the other breast. I have been very happy with my decision. I saw 3 plastic surgeons before deciding which one met my needs.
Wishing you peace with whatever you decide.

Judytjab

I am so sorry you have to go through this at such a young age. In 2013 I had a lumpectomy for pre-cancer. One year later I had stage 1 breast cancer in the same breast. I did have a family history. My mother also had breast cancer. I chose to have a double mastectomy with implants because I didn’t ever want to go through this again and I did not want to have radiation. I don’t regret my decision. I also went for second opinions for my surgeon and my plastic surgeon and I’m so glad I did. It gave me peace of mind. You have to decide what’s right for you. Big ((hugs)) to you. No matter what decision you make, we are here if you need us.

banditwalker

I chose bilateral because my first thought was, do it and get it done with. I have always had the mindset to do things now so I don't have to worry about it later. Sounds simple but that's the way I've always been. I had the DIEP flap reconstruction 14 months later and am happy with it. Whatever decision you make know that that was the best decision for you at the time. Try not to worry about woulda, coulda, shoulda. Good luck to you.

Maryflier

I had a mastectomy and DIEP flap reconstruction of my right breast November 2017, followed by 8 ACT chemotherapy sessions. Since then I have been on AI medication. I started with Anastrozole but switched to Exemestane after a few months (couldn’t tolerate the side effects from Anastrozole). No regrets. It didn’t feel right to me to have the left breast removed when it was fine. Of course, I have “scanxiety” every time I get a mammogram, but so far so good. Good luck to you, whatever you decide. Stay strong.

mofields

You might check with your insurance to see if they will cover a bilateral mastectomy if only 1 breast is affected. I had a tumor in only 1 breast and considered a bilateral (although I was much older than you at the time), but my insurance would only cover the one side and doing both would have been very expensive. I can see where you would want to do both being as young as you are, but consider your insurance first - if you carry it.

Kalee

I'm so sorry you have had to experience this at your age. I was diagnosed in 2016, left breast was affected....i did a bilateral...and chemo. Did reconstruction....diagnosed again in 2019...left breast...the cancer had reared its ugly head and came back between the skin and the implant....the implant literally saved my life....if it had not been there, the cancer would have been on my chest wall. So, I'm very happy i made that decision. So, after it came back, had to have surgery for that, my PS used shoulder muscle to create an area for the implant. Some skin from my shoulder was used, so the skin wasn't anything that had been radiated. So far so good.

hscancer

Mariel, Such a tough situation. I have had a similar experience. I was first diagnosed with stage 2 IDC ER/PR+ HER2- tumor in my left breast in 2013. I had mastectomy, chemotherapy with Cytoxan and Taxotere, and reconstruction with implant. I started taking Anastrozole, but like you stopped because of side effects. I was diagnosed with a recurrence at the end of 2019 which my surgeon said was caused not by my going off AI early, but because my cancer was very, very aggressive. I had further mastectomy (took out tumor and my reconstruction), chemotherapy (AC/T) and radiation. I am back on Anastrozole, but as of now am cancer-free.