Hello all, I am half way through chemotherapy for stage 3 hormone positive HER2 negative BC. I had 2 lumpectomys and expected radiotherapy and hormone therapy after chemotherapy. During this time however I have been given the news that I have the mutant BRCA2 gene.
I quickly made the decision to want a bilateral mastectomy and thought it was something I could think in more detail about later down the line once active treatment was finished. It was my understanding that I would be signed off to genetics at Great Ormond Street and so given the waiting lists I wouldnāt need to worry about it for a year or 2. However after a discussion with my oncologist she has said that if I considered the double mastectomy that she wouldnāt need to put me through radiotherapy. I was concerned about the wait between finishing chemotherapy and having an operation but she referred me back to the breast care team and it appears this operation could now be much sooner than I thought.
For various reasons for me personally the only options are flat or very small implants.
I know there are lots of threads on here about surgeries already. I just wanted to know everyoneās opinions on these 2 surgeries.
Vanity sways me towards implants. But are they more trouble than they are worth? Worrying about size, shape, material. Are we even given choices on this with the NHS? Also I have seen and read so many positive stories for women who decided to go flat and it is so empowering. I just dont know if I would regret it or not? I worry my 2 teenage girls who will have to deal with this one day could be scared if my flat op doesnt go well or look very nice. Though I suppose that could be the same with implants.
Any insights would be super helpful right now 
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Hi foxgem
Iāve had a single implant. It was agreed by my surgeon because I wanted reconstruction of some sort. I had it immediately following a mascetomy and full node clearance. I then had radiotherapy. The implant was damaged, by radiotherapy -it has capsular contracture and so is harder than it should be and doesnāt sit quite right. Despite this, and the fact I have to have another operation to replace it , Iām happy with the result. I have minimal scarring and I can look in the mirror without thinking about cancer all the time.
I am small breasted so it might not be that noticeable to other people if I went flat. I wanted to look as similar as I could to the person I was before.
I hope when you decide what to do, you are happy with whatever choice you make. These are difficult decisions and there is no right answer.
X
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Hi Foxgem,
Just over 10 years on from a single mastectomy with a B-cup implant. I didnāt need radiotherapy so this was a good choice for me and I was lucky. I was given several choices via the NHS and felt all options were explained well, although having to suddenly make a choice is not something any of us would expect to have to do.
Obviously, getting used to an implant takes a little time but I am very happy with my choice and I feel it made a huge difference to my mental recovery. There is no right or wrong answer, however. My biased answer would be to go for an implant because of my positive experience and I found the recovery far easier than I had anticipated. I do think itās easier for smaller cup sizes. I was in my early 50s when I had my surgery and think that now I might have more confidence to go flat should it be necessary.
Good luck with your decision. x
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Hi @foxgem
Iām 56 brca 2 and had bilateral mastectomy with smooth round implants. Surgery was to be within 4 weeks of finishing chemo to maximise good results of cancer being gone.
Initially I was given shaped expanders which were filled gradually over the weeks till i was happy with what size i wanted and that there was enough space to have implants. These were in for about a year before I got my current implants. I chose smooth as textured do give a small percentage chance of a type of cancer which I was not happy with. Also round as if they twist which is easily done apparently then its not noticeable. Also I have a concave chest so was told these round implants.would be best aesthetically for me.
They are weird at times. Can be cold.and wrinkly. They put mesh in for support and some of that is a bit square. Overall though no one can really notice even in a bikini.
After you have your surgery and you are allowed to massage make sure you .massage regularly all around the implants. I have a cord from scar tissue that I canāt get rid.of unless.its cut in surgery. One day when I upgrade Iāll get it sorted. They already have newer better implants than I have and its only been a few years. Theyāve offered me to upgrade already but im quite happy with what I have and dont want unnecessary surgery.
A family member had just one mastectomy and stayed flat on one side. She hated it for years until she got it tattooed with a big flower. She wears a prosthesis and buys special bras.
Whichever you go for you will be able to have an amoena rep come and see you at the hospital to help with picking bras, prothesis etc. NHS pays for some. They are online too and do a huge range of.comfy bras tops and swimwear.
Hope this is of help
Good.luck with finishing chemo and getting the next step done.
Xxxx
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4 weeks after chemotherapy! Wow thatās even faster than I imagined. Thank you for sharing so much detail. I have a meeting next month with the breast cancer doctor who did my lumpectomys so I am going to try and gather as much info as possible so I have all the right questions for him.
I was doing a bit of research today on implants and read that smooth might be the better choice for us. We have enough to worry about already. And also that for smaller implants round might be best incase of them moving.
So much to consider isnt there
Hi @foxgem
Thatās great you have the appointment with him. Guess youāll have a stack of questions too. Maybe the breast care nurse could give you a guide on timing of the op, I think they have a routine they like to keep to. That would help you plan. My op was done by a different surgeon as mine was on holiday and during covid so there were quarantine rules in place for him coming back. They were adamant on the 4 weeks. If youāve already had the lumpectomy and the mastectomy is a belt and braces approach they may extend the timings. Donāt let them forget about you though, get it done as soon as you can.
Have a lovely Saturday xxx
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Hi @foxgem
You might find this post and thread useful. Itās all about sharing flat or recon experiences. I hope you find it useful.
Best wishes for your decision and op when it happens.
AnGELa x
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Hi foxgem
Iāll try to be brief:
I was 61 in summer 2022 when diagnosed (so nearly 4 years down the track now).
2 different BCs, one in each breast, diagnosed together (worst being stage 2 invasive lobular - the non-symptomatic one ! - lymphovascular invasion, and turned out one node was severely affected). With strong family history, I immediately requested double mastectomy myself. Surgeon agreed. Also decided immediately to keep things simple and stay flat. (My identity is my personality/character/mind, not my breasts, so I did not fear their loss, even though they were a pretty pair. It can be very different for others.)
Initially had slightly bulky dog ears afterwards, including a bump mid-chest that rubbed sore from clothing. As I went ahead with subsequent full axillary clearance on that side, asked surgeon to ātidy me upā which he did very well. The only bugbear is the keloid/hypertrophic scarring which is wider, bumpier and pinker but my chest is quite flat and smooth. The healing from surgeries went well (TOO well, hence the overdevelopment of scar tissue.)
I very rarely wear my prosthetics (2 alternative sizes), as good as they look in the specilaist bras from āNicola Janeā and āM&Sā - canāt be bothered to be honest. It doesnāt faze me to be seen flat. Perhaps for a big night out in a glam dress (and THAT doesnāt happen often!!)
Hope this is a useful alternative viewpoint for you. Good luck with it all 
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Hi Foxgem,
I had a bilateral mastectomy 6 days ago. It really is just such a personal and hard decision, but I was happy to go flat. I found the opinions/experiences of others on hear crucial, plus spoke with the wonderful macmillan helpline staff as well as breast cancer now helpline nurse.
I believe reconstruction remains an option, but sitting here typing with drains coming out of my chest and recovering from surgery I canāt imagine wanting more surgery than the one Iāve already had. Iāve never really seen any point to my breasts, but I can understand others would be mortified to lose theirs.
Someone on here helpfully advised me going with my āgut feelingā and while I was trying to give proper consideration to all the options, I also strongly (gut feeling) wanted to go flat and live without breasts. Definitely no regrets so far. The term āFlat and fabulousā is being used around this house quite a lot 
.
Good luck in making your decision and hoping all goes really well!! xxxxx
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Hey @foxgem
Iāve often wondered what I would do if a mastectomy was on the cards for me, whether it was preventative or curative, and always thought Iād go flat.
But now itās started to look like that might actually happen, Iām thinking some sort of reconstruction would be good for me. Iām an A cup and would at least like that little bit of something there I think.
As most have said here, itās such a personal decision and Iām sure youāll find your way to whatās right for you as you have with everything else thatās been thrown at you along this journey (sorry just canāt think of a better word!)
Best of luck with whatever you decide. x
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Hello, I was put off by the addtional surgery, risks and having a foreign body in there. I didnāt like the idea of going flat initially. I also didnāt like having to make that decision so quickly at such a stressful time. I knew I could always get reconstruction later if I couldnāt live with being flat and asymetrical. To my surprise, I accepted it straight away. No regrets, I donāt usually bother with a prosthesis, it seems a bit fake to me now. I am very happy as I am. We are all different but I suppose my message is - try going flat, you might like it and if you donāt, you can change it. Good luck with whatever you choose.
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It is also playing on my mind that I will have something not me thats in me, well 2 things as im having both boobs. Im not a massive girly girl so I dont do lots of make up, fake nails and eyelashes that kind of thing. Ive never had the girl skills and actually I quite like being a plain Jane. I really dont know how I will feel with implants. All I know is I dont want the extra surgeries or recovery time from other areas. Going flat seems the safest and easiest operation physically, but harder mentally. Iām so torn!
Sorry did you have no lymph nodes involved was your cancer just in the breast is that why you donāt have to get radiotherapy or is it because you have the gene mutations I always thought stage 3 meant it had spread outside the breast I had double masectomy and reconstruction with implants and had a lot of trouble with draining in left breast and both breasts had wounds that wouldnāt heal I had my surgery in November and only stopped bleeding and getting wounds dressed two weeks ago it held my radio back I just about made the six months time limit to get it but I wasnāt in pain very much but restricted still from doing certain things I was regretting getting implants up until a week ago now everything settled Iām glad I got them but I had the surgery done on NHS and was given the option of you arenāt sure you can get implants later on down the line
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Sorry can I ask have you to get hysterectomy as well because you have the gene mutations
I was three weeks later and wasnāt giving the option of shape just asked what size and I said small as I had big breasts and there not that much smaller and have started to droop also but Iām not complaining you donāt get asked what shape you want on NHS
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I believe I was stage 3 because I had 2 cancerous lumps. One was 23mm and one was 8mm. Also my cancer had a high onco score and a high risk of reoccurrance.
I had 3 sentinel lymphnodes removed and all 3 were negative.
I was originally due to have radiotherapy on my whole breast plus targeted to the tumour site but if I have the mastectomy there would be no reason to do radiotherapy as all the breast tissue is removed.
I havent had my appointment yet with the genetics department but I believe I will have my ovaries and tubes removed at some point in the future. Until that happens I will be on hormone therapy that suits my BRCA2 mutation. Likely Tamoxifen and another drug but that is something my oncologist will discuss with me after chemotherapy.
This is all as I understand things anyway. I have probably simplified a lot of it
Hey @foxgem
@katie4 is right that stage 3 means it is found in the lymph nodes. If they told you your cancer has a high risk of recurrence, itās possible they told you it was grade 3, which is how abnormal the cells are and how quickly they are growing and is different to staging, which focuses on how widespread the cells are e.g. tumour size, body parts affected. It is very easy to confuse the two and Iāve seen this on the forum a lot.
My TNBC tumour was stage 1 as it was only 1cm and confined to the breast (although Iām expecting a promotion soon 
) but it was grade 3 as the cancer cells were very abnormal and have a fast growth rate.
Might be worth checking it with your team for clarity if you feel you need to.
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This is me @foxgem, basic and proud!
I would also struggle with implants due to the thought of having something foreign in me. Iād only be able to deal with that if it was something essential to health like a pacemaker as, in reality, I canāt even cope with wearing a watch!
Are you able to try going flat with an option to āadd inā so to speak later if you change your mind?
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Hi @foxgem
I am sorry to read that youāve had another curveball.
I chose to have implants after a nipple sparing double mastectomy last year. I was also given the option to go flat or to have DIEP. I wanted to wake up from surgery in the knowledge that as much breast tissue had been removed as possible and to not look too dissimilar from how I looked pre-op. I also wanted a shortish recovery as I had neo-adjuvant chemo and targeted therapy. On top of that a dose of Covid after the last cycle so was running on empty when it came to my op.
At the time I was very comfortable with my decision and remain so 10 months on. They are symmetrical and not too dissimilar from my originals in terms of size and shape. I healed well and no complications aside from some redness 4 weeks post op called red breast syndrome, a reaction to the mesh which resolved over the course of a month.
Read about the options and hear other peoples view points then go with what your head and gut tell you. X
.
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I had thought about going flat and delaying reconstruction but ive already had 2 breast surgeries, the thought of having more than just another one is really off putting. Everytime we are under anesthetic its a risk isnt it so I just want whats safest.
I look at non nipple sparing implant photos and imagine how happy that person is to walk about day to day feeling more themselves but underneath that dealing with scars/rippling. Is it a small price to pay for that normality?
Then I look at the flat and fabulous women who absolutely rock their flat look and are just oozing with confidence. We all want that right! But the price is a very new and daunting normal.
Ive done so much research and ive come to the conclusion that until I have a really indepth conversation with a surgeon I really cant make a real decision. So Iām back in another waiting room haha We are given hard lessons in patience arenāt we!
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