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Other breast: To keep or toss?

janewhite
janewhite Member Posts: 49

I was diagnosed with DCIS a few months ago. I had lumpectomy with bilateral reduction, then needed to have a mastectomy instead since not all of the DICS was removed. In the end I had 3 separate sites, two of them high-grade, although none had yet progressed to invasive BC.

I didn't want to deal with reconstruction, so the left side of my chest is now flat. The right side is still healing from the reduction 2 months ago, which was SO much worse than I expected and honestly harder than mastectomy.

I look fine with a fake boob in a bra, but I think I'd rather be completely flat. The only thing that makes me hesitate is the pain and recovery time AGAIN.

Aside from wanting symmetry, there is also the risk of cancer in my remaining breast. Are there good resources for estimating the risk that my right breast will get cancer, and by how much a mastectomy reduces that risk? (Age 40, dense breasts, late childbearing, family history, negative genetic tests.)

Comments

  • lw422
    lw422 Member Posts: 1,399

    Jane--this is such a personal decision for each of us. When I was first diagnosed I just wanted both my boobs OFF of me. Unfortunately my SO pressed for a single MX because they wanted to make sure I had the smallest chance of surgical complications and could get started with radiation ASAP. (I have inflammatory cancer.) So I was bummed about that for a while but got used to the idea and after having the surgery I am glad I don't have two sides to deal with healing.

    People ask me if I plan to have the other breast removed, and due to the discomfort I've had from my surgery my answer is NO. I don't want to go through this again, ever. Of course I am older than you and my perspective is probably different at this point in life. I wish you the very best no matter which option you go with.

    Sorry I don't know of any risk calculators.

  • hubbydawn7
    hubbydawn7 Member Posts: 2

    Jane, mine was very similar to yours, a lumpectomy then mastectomy for both because precursors were in the left breast. I’m currently in the reconstruction phase but don’t mind being flat for now. It is definitely a personal choice that is hard. I will be praying for you and your process

  • moderators
    moderators Posts: 7,894

    Welcome, hubbydawn7, and thank you for sharing a bit of your story in such a supportive way! We're sorry you find yourself here, but we're glad you've joined our community.

    The Mods

  • deniseml
    deniseml Member Posts: 68

    LW422 - we have similar diagnosis and like you, I only had single mastectomy in January ( also IBC ). I am still considering prophylactic MX on right. My concern is, if I do have other breast removed for symmetry what kind of surveillance testing will I have after? Right now I am having a MRI Breast alternating with Mammo every 6 months. It is comforting to have the MRI breast which also images left chest wall and lymph nodes since the cancer at diagnosis was found in chest wall and all level 1 and 2 lymph nodes. Im afraid no further imaging will be done once rt. breast is removed. The highest risk for recurrence is first 5 years, especially first 2 years after HER2+, IBC! This is the only reason I hesitate moving forward with 2nd. surgery.


  • bcincolorado
    bcincolorado Member Posts: 4,696

    Definitely a personal decision. A lot of women decide to do them both right off the bat based on family history alone and their own fears and worries. I chose to try to go minimal damage if I could and tried lumpectomy first and then after the re-excision after that and they said it had it had to go. Do not regret it and I am out now awhile form my surgeries since one side is "me". I did do an implant which is ok and I am far from "even" on both sides but the way I dress no one can tell anyway. Best wishes in whatever you decide. You need to make whatever choices make YOU happiest.

  • janewhite
    janewhite Member Posts: 49

    Thank you, everyone. I'm still thinking. I probably will do it eventually, but not until next summer at the earliest. I'm tired of surgery, I want to get my strength back first.

  • lw422
    lw422 Member Posts: 1,399

    DeniseML--My MO stated that since I had PCR with chemo, I will not have any scans in the future unless there is something suspicious to check out. I will see him every three months, and continue to have annual mammograms on the healthy side, however. I feel a bit like I'm left out in the cold now that active treatment is done; it's a bit scary.

    I'm still not comfortable in my body since my mastectomy 2 months ago and the radiation I just completed; everything is still sore and tight and icky. I am finding that living with one "D" side and a flat side isn't as easy as I thought it would be, so I may be sliding over to Team Prophylactic Mastectomy soon. I'm thinking that removal of the uniboob couldn't be as bad as my first surgery since it wouldn't include any lymph nodes (which has been the cause of most of my pain.)

    I sent a message to my SO today; I have questions for her about how long I have to wait before moving forward. Not sure if there are different "rules" for IBCers (such as there are for reconstruction after IBC). I just want to be comfortable in my own skin again, and it's hard.

    JaneWhite--I agree about not wanting more surgery for a while. It takes longer than I expected to recover from this stuff.

  • spookiesmom
    spookiesmom Member Posts: 8,167

    I had bmx in 2012, no recon. There is nothing to squish so no mamo. Still have port, MO visits every 3 months. He said there would only be scans if a possible problem. I found the pea size lump on the other side. 7 years later. PET/ct lit up. Surgery and rads again. I’m currently on ibrance and letrozole, doing well

  • janewhite
    janewhite Member Posts: 49

    Update: I have my other mastectomy scheduled for May. I'm looking forward to it eagerly.

  • katg
    katg Member Posts: 206

    Jane white- I just found your post. I am BRAC-2 and so it was recommended a double mastectomy as my chance of cancer is 42%. Big cancers in my mom's side, likely the one with the BRCA-2- Anyway, after 13 rounds of chemo, my 5cm shrunk about 1/2. My breasts are not big, so removal plus margins means real disfigurement with lumpectomy. So, chemo for me was off the table in Dec. as the chemo target pill messed my blood up too. 2 strikes.

    Feb 9th, left mastectomy and tumor out. No more waiting. Ovaries and Fallopian tubes too. BRCA-2 Loves ovarian cancer. Pain??? I too say the lymph nodes. I had 3 out and all were clear. The under arm pain still pains a bit nearly 7 weeks out. I had a skin saving masectomy, which i must admit i did not read up about. Less to worry about before. A great plastic surgeon who works as a team with the plastic surgeon. He put in the inflater. I had little pain. Too numb. It is still numb. I was told nerves are cut, my entire breast inside was removed. I have a barbie breast, no nipple. Numbness may be forever. Overall, I felt if they could do an implant and felt for me it was ok, I would do it. No big ones, my smaller size again.

    For me, the other side must go. With BRCA-2 and ...................HER2 that went from HER2-, then flipped to HER2 + in my tumor, I just cannot live wondering. HER2+ is aggressive protein. Looks like it is on the schedule May 31st. My friend who had a dbl no reconstruction said if i wanted pictures of what i look like before, go to a photographer that does that. I thought about it, then went and took a few myself. I bought an instamatic camera that arrived after my surgery, but i have used it for pictures of me through recovery. Just the breast, not my face,

    I will say i can keep my nipple on the unaffected side. I just may do it and have one tattooed on the other side. Just thinking about it. I figured what another patient said that my boobs may be the same size, but they will never sag as my real ones did. And with Gods help cancer will not invade them. It is our choice, with a Doctor's recommendation. My plastics doctor does have a practice else ware as does my breast surgeon, but having them help me is my joy. Both did their jobs with minimal pain to me and no errors. I have healed nicely. Bruising on my breast took an extra week, but i did my part to clean and keep bacteria free.

    Of course, i asked the MO yesterday how the implant goes in, and she says the same incision. At least 2 weeks to recover. Not sure if the right comes off, then i come back and get both implants. Next Friday I meet with the plastics DR. He will give me the plan he and the surgeon have planned.