Worries/Questions regarding Mastectomy

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. 

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?  

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. 

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

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.

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.  

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/

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.

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 

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.