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Shelleyc's avatar
Shelleyc
Member
6 years ago

Worries/Questions regarding Mastectomy

Hello,
I wasn't sure which section to place my question in so I went with newly diagnosed (hope that was ok). I am 56 and was diagnosed with Stage 3 HER2+ and ER+ breast cancer in July 2019. I had a 5cm mass in my upper left breast which had spread to my armpit lymph nodes. I have completed chemotherapy(doxorubicin & cyclophosphamaide followed by paclitaxel). I am on herceptin for 12 months and soon to start tamoxifen (10 years worth). A MRI done in January 2020 showed that there was only scar tissue in my breast and that my lymph nodes had gone down. My problem is that I have had trouble accepting a mastectomy and removal of my lymph nodes and have deferred my surgery from January to April. Now when I was finally close and decided that I wanted a double mastectomy (all or nothing) I find out there is only scar tissue present and as I am taking anti-cancer medication I want to defer the surgery and just be monitored until there is further sign of cancer. My Oncologist and Surgeon are against this but the only reasons they can give me is that it's the protocol for best case scenario and that no one ever doesn't have surgery. I am hoping that there are people out there that have chosen the wait and see approach or know someone who has. Thank you.
coping
her2
mastectomy
new-diagnosis
tamoxifen
  • Shelleyc's avatar
    Shelleyc
    Member
    6 years ago
    Thank you all for your comments. I feel I’m thinking if the cancer is gone from my breast why do I need a mastectomy especially as I am and will be taking anti cancer medication Herceptin for 12 months & Tamoxifen for 5-10 years. And if there is still microscopic bits of cancer in my lymph nodes won’t they be killed by the anti cancer medication & if they aren’t killed by it why am I taking it and risking the possible health problems associated with these two medications. The Oncologist said that I would need to take the herceptin & Tamoxifen even after a double mastectomy just to be sure. The Surgeon also wants me to have radiation after the surgery just to be sure, it just seems so excessive to me. And none of it guarantees that I will be or stay cancer free. I’m just feeling completely overwhelmed by it all & the decisions I have to make. I haven’t seen the surgeon since the MRI but he previously would not consider a lumpectomy due to the original size of the tumour.  
  • Blossom1961's avatar
    Blossom1961
    Member
    6 years ago
    You need to do what is right for you. However, if you find yourself stressing about the possibility of it returning, you need to revisit your decision. I had chemo then mastectomy and anxillery clearance one side followed by twelve months Herceptin. They wanted me to have radio as that was protocol but they couldn’t give me any extra assurance with it so I said no. All the best with your decision. My breast cancer was all dead after chemo but they didn’t know that for sure until they dissected it after my mastectomy. My lymph nodes looked clear but they found two micro spots of living cancer cells when they did the dissection.
  • kezmusc's avatar
    kezmusc
    Member
    6 years ago
    Absolutely a personal choice.  Is there any way they can offer lumpectomy if the breast tumour has gone down & node removal or immediate reconstruction?  
    They get scared when people don't want to do what's in the protocol.   Ass covering a lot of the time I think. Your body and your rules. You can say yes or no or how about this instead.
    All the best with your decision lovely.
    xoxoxo

  • Afraser's avatar
    Afraser
    Member
    6 years ago
    Just to add - the reasons people don’t want to lose a breast (or both) are many and various. As far as I am concerned, none are ‘better’ than others, it’s a really personal thing . Faced with a relatively large and possibly aggressive tumour, I had little problem in accepting a mastectomy. A partial didn’t seem useful and was possibly less effective. I haven’t found adapting (no reconstruction) difficult. But for others, it’s a profound loss of identity, relieved to an extent by reconstruction. For many, as noted by @jintie, surgery is the painless, easy bit physically, but can be hard emotionally. It may help to analyse exactly what you can’t accept and work out how important that is to you longer term. 
  • jintie's avatar
    jintie
    Member
    6 years ago
    If you’re comfortable telling us... why are you having trouble accepting mastectomy and lymph node removal?  Is it because you will lose a boob?  Is it because you’re worried about pain after surgery and the recovery?  

    Stage 3 is a fairly high stage - one stage before Stage 4.  You had lymph node involvement.  Even though chemotherapy has essentially made the tumour into scar tissue, there’s no guarantee that every little itty cancer cell has gone.  

    Oncologists and surgeons have spent many years in this field and have many, many cancer patients.

    If you’re worried about losing a boob, did they offer reconstruction to you?  It’s amazing what surgeons can do.

    if you’re worried about pain - my surgeries was essentially painless.  It was my stomach that was more painful than anything else (due to DEIP reconstruction).  Others can share their stories with you.

    Maybe share your worries - and I’m sure many of the ladies will be able to share their experiences with you.
  • Afraser's avatar
    Afraser
    Member
    6 years ago
    Dear @Shelleyc

    I haven’t been in your position so can’t speak from experience, I hope someone else can. But I did some work with a research group looking at the pros and cons of treatment/delayed treatment. There are circumstances when ‘waiting and seeing’ may be justified (ie small, very slow growing tumours) but one of the problems most participants identified was the continuing anxiety about perhaps not doing everything you could to stop the cancer (recognising there are no guarantees there either). The problem lies with not knowing for certain if any undetected cancer cells remain in the breast or affected lymph node area. You hope chemo has mopped all that up, but it’s not 100% sure.  In the final analysis, it’s your decision. A second opinion may be helpful. Best wishes whatever you decide.