Depression, BMX decision, Reconstruction decision

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TaraMom22
TaraMom22 Member Posts: 20

I am a week away from my 6th chemo, so about 5 weeks away from surgery. I was so hopeful that with my complete response that the surgeon would consider a lumpectomy instead of a mastectomy, but he convinced me that wouldn't be safe given how aggressive HER2+ can be. I have now decided to have a double mastectomy, because I want to take away the chance the cancer can ever come back in my breasts, but the choice has made me depressed. I know it is the right choice for my health, but I never let myself really think about having no breasts.

I have heard such horror stories about the pain of reconstruction that when I initially thought about it I thought I wouldn't have reconstruction because I am so tired of feeling like shit, but I am wondering if it would be better to do reconstruction so I didn't feel so ugly every time I looked in the mirror for the rest of my life.

My timeline is... last chemo May 29, feel like shit for most of June recovering from chemo, BMX beginning of July, feel like shit all of July while I recover, begin radiation in August, feel like shit for a big chunk of September when the Radiation burning and exhaustion hit me. If I do reconstruction, finallly get TE's traded for implants in late September. Maybe feel like myself again sometime in October. I am just so tired of feeling like shit, and when I think of all that is in front of me, it is hard to climb out of this depression that is getting me down.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2020

    I don't know what to say about your surgeon, but mine was happy to give me a lumpectomy. And, yes, I was HER2+! If you really want to get a lumpectomy, preserve your breasts, and avoid reconstruction, I would suggest you get a new surgeon.

    I am almost six years out, and don't regret shortening my treatment process by getting minimal surgery. I have twins with autism who needed a hands-on Mom ASAP.

    Have you talked to your oncologist about your depression? Aromasin + Zoladex sent me in a funk, and Celexa has done wonders for reviving my spirits. ((Hugs))

  • WC3
    WC3 Member Posts: 1,540
    edited May 2020

    TaraMom22:

    Mine was HER2 positive, about half the size of yours and I will never be sure as to whether or not there was lymph node involvement but my MO and surgeon were fine with a lumpectomy provided I did radiation as well. I chose a bilateral mastectomy instead for a number of reasons...basically the amount of tissue that would have had to be excised constituted most of my breast, I still would have needed reconstruction and also surgery on the other breast to achieve symmetry and an acceptable aesthetic result, there is bilateral breast cancer in my family, and I didn't want radiation. The pathology from the surgery determined I had a pCR with only DCIS remaining but I don't regret my decision to go with the BMX even though I was unable to have DIEP as originally planned. I did not find my pain levels after the BMX unmanageable. I was actually in more pain after the exchange surgery but there were some confounding factors.

    You will probably require radiation regardless since you have confirmed lymph node involvement but you should discuss with your MO whether or not a lumpectomy is an option for you, and also seek a second opinion from another surgeon.


  • TaraMom22
    TaraMom22 Member Posts: 20
    edited May 2020

    Thanks for your reply, Elaine. I am not using that surgeon. I decided he may have a rehearsed "caring" bedside manner, but I don't believe he really cares, since he had to have seen how upset I was and he didn't look like he cared. It wasn't just the surgeon that convinced me to do a double mastectomy. My tumor was large, the plastic surgeon who was in the appointment as well explained (after the surgeon left) that because of the size of my tumor, and location, the breast wouldn't look right if they did a lumpectomy, and would be hard to fix. Combine that with the increased chance of recurrence with a lumpectomy vs. mastectomy, and I have decided to just do the double mastectomy so I have a clean slate. I just don't know how much pain I can tolerate to turn my "clean slate" into something that looks like breasts.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited May 2020

    The choices we make are very personal, but I will say that I had both a lumpectomy and a mastectomy. Having been through both, I found that the lumpectomy was better for me, physically, mentally, emotionally. My personal opinion is that a lumpectomy is best when medically possible, although I know many on these boards would disagree with me.

    Sometimes we do what we must to treat the cancer, but don't let anyone pressure you into something you don't want unless YOU decide it's significantly beneficial enough from a treatment perspective.

    At the end of the day, we are the ones who have to live with the consequences.

    I hope that makes sense. I'm hoping the best for you.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited May 2020

    Also, there are sometimes more options to repair a lumpectomy. Best wishes to you whatever you decide. See: https://www.breastcenter.com/breast-reconstruction-procedures/lumpectomy-repair/

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2020

    TaraMom,

    My lump was big, too. However, after chemo it was gone, so my surgeon ended up only taking out a golf ball's amount of tissue. It also helped that I'm a C-cup, so taking that much tissue didn't have as much impact as say an A- or B-cup. But, you have to do what's best for you, not what was best for me.

  • Bonnie7
    Bonnie7 Member Posts: 57
    edited May 2020

    Taramom,

    So sorry that you are in this predicament! I have had both lumpectomy and mastectomy, same breast. I had a recon 10 yrs after mast and a reoccurence above my implant 20 mths after the recon surgery (lat dorsi), patholgy showed the cancer was from my 2005 mastectomy!

    I am left with 3 nodules on chest wall which are stable. After all of the above I wld be looking at minimal surgery and lumpectomy wld be my choice!

    I know I have prob just been unlucky but there are no guarantees! Keeping in mind some people have lumpectomies/mastectomies with no reoccurence either way!

    Best of luck to you! 😘💛X

  • TaraMom22
    TaraMom22 Member Posts: 20
    edited May 2020

    When I wrote this, both my oncologist and the surgeon I saw initially were both saying I needed a mastectomy without giving me details. I was so frustrated with the surgeon when I saw him 2 weeks ago and how little information he gave me (He only spent 5 minutes in the exam room!) that I decided I would not use him. Last week I had a video visit with the breast oncology surgeon that my oncologist works with most closely. I know that seems confusing but I started out with a different oncologist in a different medical center so initially saw a surgeon there. I chose a new oncologist in a location 10 miles away in the same clinic network. When I did that I figured I’d keep the surgeon because I liked him initially. After that five minute visit I decided he wasn’t working, and my oncologist got me a video appointment with the surgeon in her clinic.


    that new surgeon spent an hour with us last week explaining so much. I’m now sort of pissed off that both my oncologist and my initial surgeon were so stingy with their information. First of all, I didn’t understand that the cancer in my breast, if it comes back, won’t kill me. It will require more surgery, might require more chemo or more radiation, but cancer in my breast won’t kill me so both of them being adamant that I get a mastectomy without explaining why we’re not being helpful. She also explained that if I have had a complete response like the MRI shows that she doesn’t need to take the full amount of tissue where the tumor was +2 cm margin. She said it’s enough to take 50 to 75% of the tissue where the original tumor was and if it is 100% free of cancer then she could assume that with a 92-96% accuracy that all of the cancer from that tumor is dead.

    And the final shock is that the initial surgeon when he requested a lymph node biopsy, requested the biopsy of the lymph node in the ancillary tail of my breast and did not request a biopsy of any of the lymph nodes in my armpit. So we have no idea if the lymph nodes in my armpit are involved. Given that that’s the road to the cancer that would kill me, I’m pretty pissed off about that. So now the new surgeon is strategizing on whether she has enough information to do a sentinel lymph node biopsy given that she doesn’t know if I started with cancer in the lymph nodes under my arm. But she has a plan. I’m having one more MRI, she’s using the radiologist that she trusts the most, and the two of them are going to work together to try to figure out what’s going on in the lymph nodes in my armpit.


    The plus side is that I have complete faith in this new surgeon. The downside is that the prior surgeon made her work harder by not getting enough information through biopsies and MRIs at the beginning of this journey. The other plus side is she made me much more comfortable considering a lumpetomy. We’re still gathering more information, I have a second opinion scheduled for this week, I have that follow up MRI scheduled, but I know if I choose a mastectomy I will choose it based on really good information.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2020

    TaraMom,

    I'm so glad to read that you've found a surgeon you're comfortable with. No surgeon should be allowed to recommend surgery without fully explaining it! My nodes were a mystery -- one tested positive before chemo but my surgeon failed to place a surgical clip in that node so we could keep track of it. After chemo, all my nodes appeared clear in an MRI and a PET scan, but my surgeon ended up taking out all my Levels 1 and 2 nodes (20 in all!). Grrr. Fortunately, I did not get lymphadema. Best of luck in your decision making!

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