Hi Mazza, bc brings a whole lot of tough choices and in the end we have to decide what is right for us. I saw my mum die of bc when I was young and was quite clear that I would take every treatment to nip this in the bud now in the hope that there is no next time. This seems a very random disease, and whichever treatment we do or don't take or prevention afterwards doesn't offer any guarantees. You might refuse it all, I might use it all and still be the one to get a recurrence. In the end we can exercise choice and you have a perfect right do so.
I would, however, just say a few things if I may. I didn't have chemo because I was grade 1 and stage 1 and not considered to need it. As you have stopped the chemo, we are probably similar in that neither of us had a systemic treatment. I did have radiotherapy though with absolutely no after effects that I can tell, and that might be an option to zap the area of your mastectomy and ensure that there are no rogue cells left. it is a month out of a lifetime and only a few minutes treatment per day.
I was scared witless by the list of contraindications both on radiotherapy, and tamoxifen which I have taken for the last two and half years. The oncologist said that if I hadn't had chemo, tamoxifen would be particularly beneficial to me because it also acts as a systemic. Like you, I didn't like the sound of it, but agreed to give it a go and see whether it had terrible side effects. Despite the horrible sounding things on leaflet, it really didnt have any nasty effects on me at all and I would be very happy to take it forever should someone say that would help to prevent bc coming back.
I guess what I am saying is, you might give tamoxifen a go and see whether it affects you. It might well not? They also told me that most benefit is gained in the first couple of years, so even if you only took it for a while, help offers you protection for a long while afterwards.
I reckon getting rid of your ovaries is probably sensible. It would presumably cut down on the level of oestrogen in your system and that can only help. I would happily have got rid of mine. I have had my children, I don't need them any more. As to bilateral mastectomy, there isn't a great hurry to decide what is the right course of action. Lots of women have delayed reconstruction because of radiotherapy. It took me a fair amount of time and counselling to come to terms with my new - and altered self. I totally understand and remember that feeling of bc having stripped away my femininity. I just wonder if, with the passage of time, you might prefer to go the other way and have a reconstruction, or even a bilateral mastectomy and double reconstruction as one younger friend did to protect against recurrence.
it all happens so quickly and unexpectedly that I look back now and it all feels surreal. I am now a couple of years beyond diagnosis and having not - so far - had a recurrence am in the process of reconstruction which makes me feel much more like my old self.
Whatever is right for you, you must do it, but you are at a very scary stage and in your position I might just give yourself a little time and maybe even some counselling before making any decisions until you have absolutely decided which is the right route for you.
For me, that route is everything possible to help me beat this. I want to be around to see my children grow up and that made my choices clear. Sending you hugs whichever way you decide to go.
MG
All I know is that my bc is invasive and is living off my hormones. Well done to everyone who has came through treatment you are all very brave.
