Worries/Questions regarding Mastectomy

Hello Shelleyc,
I had stage 1 but the aggressive one and no need for mastectomy. So I asked my doctor what is the chance I'll get the same cancer in the other breast from 1-5 years and she said ''pretty high''. So my answer was ''what do we talking about, get me double mastectomy I love my life more than my boobs and I don't have a time to spend every day in front of mirror to shape the missing breast to the shape of the other one :D ''. I'm 47, two small kids,  no boobs, no reconstruction and live perfectly happy with it, on tamoxifen for 5 years. Never dropped tear because of my boobs. I cried because I didn't find it fair, why me. Why this approach - I have friend, stage 4 ovarian cancer and it's for her the end time so I consider myself the luckiest person when I compare myself with her. The operation was absolutely ok, no pain (and I was worried about it). And my decision paid off because when the results came back from biopsy, they found another 3 little suckers cancer growing in that breast, not detected on any machines. If I would go just for lumpectomy, I'll be back in no time with them and who knows what stage of cancer. My kind advice, not recommendation, if you like your life, do what doctors said , they know heaps more than us. I wish you all the best love, you can do it !!!  BTW I invented my own bra fillings (not the heavy ones looking like implants) I bought lots of sport bras, because they have the pockets to insert fillings so I cut my old bras from straps, fitted them in the bra and filled the rest (the space) with pillow filling. Light, comfy, airy,.... nobody can see difference!! :D

I've known some to have surgery with tissue expander in then radiotherapy then go back  and finish the reconstruction. 
I didn't need radiotherapy as no nodes and stage 1. But I had the 2 stage reconstruction in case pathology suggested otherwise. 

@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.

@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.

@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. 

@Shelleyc just curious if your surgery will include reconstruction or is it a separate surgery?

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.

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.

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 

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.