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Worries/Questions regarding Mastectomy

ShelleycShelleyc Member Posts: 4
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.
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Comments

  • AfraserAfraser MelbourneMember Posts: 2,881
    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. 
  • jintiejintie MelbourneMember Posts: 102
    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.
  • AfraserAfraser MelbourneMember Posts: 2,881
    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. 
  • kezmusckezmusc Member Posts: 1,446
    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

  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,538
    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.
  • ShelleycShelleyc Member Posts: 4
    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.  
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,090
    Hi!  Your medical team is working towards the best outcomes for you.  There's a couple of links here that may help you with where you are at and questions to ask

    https://www.reclaimyourcurves.org.au/home.html
    https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/




  • primekprimek Broken HillMember Posts: 5,331
    Breast cancer unfortunately is very resilient. The scans cannot show microscopic remaining cells and in reality only one needs to survive to reproduce. Once herceptin stops there is no protection from her2 and therefore if any remaining it can multiply extremely rapidly and go into stage 4 within months. Your life would then be looking at herceptin for as long as it works rather than it stopping at 12 months. 
    Removing the area the cancer was and nodes would reduce the risk of remaining cancer cells.
    I too had same pathology but stage 1. I chose a bilateral and sentinel node biopsy. My cancer was difficult to detect via mammogram...actually it was not detected at all but found by myself 5 weeks later. I personally did not want to always be worried it was growing back and not being detected. Technology can only do so much and is not infallible.
    Yes...tamoxifen will help suppress but it's not always enough, and sadly there are many deaths still from breast cancer.
    On a positive note...there are less deaths from breast cancer now and slowly improving treatments for women with metastatic disease. However these improved stats are because of standard treatments of surgery and chemo and targeted  treatment plus hormone therapy. Your surgeon can't even use the guidelines to tell you what might happen without...as that calculator doesn't exist. Surgeons usually offer the least drastic surgical treatment possible, so if they are recommending surgery I'd be following it.
    I suspect now with such great positive response in your mind the problem is gone. The fear wouldn't be there now like at the beginning. However whilst anything remains it is still a risk...and my own thoughts with my treatment was this "I don't want to look back on my choices in 2 years and regret not doing all I could to be cured of breast cancer". You get one shot only at cure.

    We all live in fear of return even doing it all. I can't imagine the internal angst that may occur not having surgery. Yes it's your decision and your body, as long as decisions are made with all the risks laid out bare to think about.
  • HanksterHankster Member Posts: 60
    Of course it is your choice but the reality is it can come back in the same breast. I had a friend who decided not to have her breast removed however it came back after 2 years in same breast. This may not happen to you but it does happen .  Good luck with whatever you decide 
  • AhnnAhnn Member Posts: 28
    Hello @Shelleyc! Everyone has different experiences with cancer and you can only make the decision for yourself based on those experiences and your knowledge and information provided by your specialist team. I was surprised to learn i made my decision many years before my diagnosis. I had a cousin who had all the chemo and radiation treatment but refused surgery. She died age 49. Her sister was diagnosed age 60 and elected single mastectomy immediately. About 5 years later she had a different cancer in the other breast followed by mastectomy and bilateral reconstruction. 15 years later it's my turn. Initial lumpectomy indicated more widespread than any scans noted, total mastectomy removed that what if some gets missed. Never forget it's your body and your choice.
  • ShelleycShelleyc Member Posts: 4
    I saw the Surgeon this week and I have decided that I will go ahead with the double mastectomy. I have accepted that at this moment in time surgery does give me the best chance to help stop the cancer recurring (although I know it's not a guarantee). I want to move ahead with my life. But like Blossom1961 I will probably decline radio, partially because the surgeon has said I need it but the oncologist said that she didn't think I did and as it brings with it the possible increase in lymphedema and not being able to have a reconstruction, but I will wait until I get the results from the surgery.
  • NewBoobsPLSNewBoobsPLS Panania, NSWMember Posts: 20
    @Shelleyc just curious if your surgery will include reconstruction or is it a separate surgery?
  • jintiejintie MelbourneMember Posts: 102
    @Shelleyc I had radiotherapy before my bilateral mastectomy and DEIP reconstruction and my foobs looks and feels fine.  Yes - reconstruction can be done after radiotherapy... FYI. 
  • ShelleycShelleyc Member Posts: 4
    @NewBoobsPLS I have to have two different surgeries because the surgeon said that i could not have a reconstruction at the same time. He didn't say why, just that it was not possible. He wouldn't even consider a lumpectomy even though the MRI shows only scar tissue. I asked if I could have radiotherapy before the mastectomy and he said no. He seems very set in his ways and doesn't like to deviate at all.
  • SisterSister Adelaide Hills, SAMember Posts: 4,538
    @shelleyc It could also be that he is being cautious.  While the MRI shows only scar tissue, the reality may be slightly different when he goes in.  However, he should be saying why he's thinking this way.  There are very good reasons for many protocols.  For me, it was the standard surgery, chemo, rads which finished 18 mths ago.  Although my skin coped with rads really well, it's still too tight to even consider recon at this stage.  In the end, what you consent to is your choice but it is really important that you go into it with the facts/evidence clearly understood.  You may also want to consider finding a counsellor if you haven't already done so.  Some of this stuff can really mess with your head, particularly if you are finding it hard to make decisions.
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