i had my original diagnosis, 10 years ago, had lumpectomy, chemo, rads, another primary opposite side, november last year, mx, chemo undergoing rads at present,
i have asked my surgeon if he would perform mx to remove my ‘healthy breast’ he said he would but not until a later date,
should i go ahead with the surgery as a preventative measure, or should i go for regular mammograms and hope i dont get another cancer,
my surgeon and my onc have both told me i was very unfortunate to have had cancer twice, once in each breast, it was very unlucky for me,
what should i do, the thought of ever having to have chemo again, i would rather have the preventative surgery,
anyone else been faced with this, what did you do, many thanks liz xx
Hi Liz,
It’s a stinker trying to decide what’s best. Are you coping having lost one breast? Would losing two distress you? Do you find it a pain not being able to wear low cut clothing now?
These are the questions you need to ask yourself as only you can decide what is right for you.
Perhaps if you write down the pros and cons it would help.
Good luck with your decision.
E
Yes Liz, me. I am having this dilema at the moment. I have a large area of high grace dcis and also three (was originally told two) invasive tumours. I was told by three docs to have a mastectomy, but one on the team wants to go in again and see if she can get clear margins. I have told her, if this does not work and there still not clear, or if I still feel the same way in a few months time, I want them both gone. She has agreed and has said she will do both at the same time. I thought I was kinda ok with this, BUT I am away inbetween operations on a girlie weekend and I have enjoyed dressing up in nice glam clothes and looking feminine etc. I realised how much I like my breasts and my cleavage and tonight am feeling very very confused and sad. I so know what you are going through.
Emmbee, I have just read your post. Does that mean even with a reconstruction, we could not wear low cut tops. I am a girlie girl and like to glam up 
I think it’s a personal preference. I, personally, want a double mastectomy if I get the choice to allay any future fears of recurrence due to a very strong family and having been diagnosed at a young age. I will want reconstructive surgery though. And will then be more likely to have matching breasts!! I know it will take a long time and be very emotional, but I am 100% sure that is what I want if I get the choice.
Hi star,
Yes, of course you can wear low cut tops if you have a reconstruction. I was presuming, since Liz had not said, that she did not have a recon. Perhaps she will come back on this and put me straight.
E
Thanks Emmbee, its silly things that you dont always think of.
Hi Star,
I did not mean you were asking a silly question, just trying to reassure you.
E
Hi, I went 7 years with only one breast and after I had my 2nd mastectomy I actually felt more comfortable. But I am not a “girly” girl. You can read my bc story on my profile and if you want any more info please feel free to ask.
All the best whatever you do.
Maria X
Hi
I’m facing a similar decision. I had an mx in November for multi-focal ILC and there are already some questions being raised about my remaining breast. Even if what’s there proves to be benign, my BCN is going to help me make a case for a prophylactic mx to be done at the same time as reconstruction next year. Notwithstanding all the crap I’ve been through in the past few months I would much rather have the risk removed than be left constantly worrying about it coming back on the other side. Chemo nearly killed me, so if a further mx is going to reduce the risk of my needing to go through that again, that’s what I want to do.
It is a big decision and not one I take lightly but I can’t help but feel that it would give me greater peace of mind.
Nymeria x
hi and thank you for your comments,
i havent had any reconstruction, and i dont intend to, and yes i have a veerrry big problem with body image at the moment,
i havent coped too well with my mx, and i dont like the way i look, BUT and it is a big but, i cannot live worrying whether or not i am going to get cancer again,
the remaining breast has to go, i know that, but i am struggling at the moment with accepting that,
i cannot take the risk my fear of cancer, by far outways the way i feel about my body image,
i have never been busty, or particularly girly, but if i dont feel good in myself about my lack of a breast how can i bring myself to have a physical relationship with my long term partner, he says he isnt bothered and that i am the same person and he feels the same about me now as he always has, its not about him though is it,
sorry to ramble on, i really felt i had coped well with all of this, but now i am wondering whether i may benefit from some counselling or something, i know what i have to do, but gosh it is hard trying to do it!!! best wishes liz xxx
Hi i was just wondering nymeria, what chemo did you have, i too have that fear that if the cancer came back, i dont think i could face chemo again, i had 6 tax, and like yourself i felt several times as if i was going to die,
are you the lady whose posts i have read in the past, that didnt finish the regime because you were too ill, or is that someone else i am thinking of
best wishes liz xxx
Okay, everyone has to make their own decision on this but as someone who had a recurrence in my healthy breast, a recurrence which was missed by mammogram several times, I’m sure I don’t have to tell you what I’d decide if I had my time again.
Hi Liz and everyone,
I had bilateral mx in March, one was prophylactic. It was a hard decision made because:
my mother had an aggressive recurrence (or new primary, they’re not sure) in the other breast after 18 years;
There was bc in my family, though not at a young enough age for BRCA genes;
I had extensive high grade DCIS found after investigations for a benign lump. There was a tiny bit of diffuse calcification on the mammogram, and through all the tests I was told it was 95% sure to be nothing. It was actually 6cm, and largely invisible. I was told MRI was not justifiable (some DCIS, particularly the aggressive form, only shows on MRI) and in any case throws up lots of false positives which then need investigating;
My Mum had a similarly invisible to mammogram DCIS which delayed her first dx;
I had reasonably sized breasts, but am an outdoor person. I felt having one breast would be more difficult because I’d feel self-conscious being lop-sided, and wearing a breast form all the time meant I’d have to wear a bra which I didn’t do that often anyway.
I had a bcc volunteer who I talked to lots, and also had a session with a counsellor.
My surgeon agreed to do the op, although he didn’t agree that the risk of recurrence on the other side was high enough to justify it.
When I got my results, I had lobular hyperplasia in the healthy breast which is a definite additional risk factor so I felt very happy with the decision. I’d also decided that whatever happened afterwards I’d be happy with the decision because I’d remember the fear and the chance of recurrence.
I feel fine now after 3 and a bit months. I mostly don’t wear breast forms (only if I’m wearing something that is cut for boobs!) I’ve got a couple of bras with lacy front bits that I can wear with some of my low-cut stuff. I don’t have a cleavage obviously, but it doesn’t look odd at all. Everyone knows I have no breasts too! I wear scarves, shawls, shirts over t shirts, or increasingly just t shirts and barely think about it.
I’m not prepared to take the risk of recon, I’m too active to risk losing any muscle strength and I don’t see the point in having an implant that doesn’t look realistic unless wearing a bra (some people feel differently I know, that’s just how I feel). It’s a big decision, and I worried and worried before the op. Once it was done I felt really ok.
If you’d like to chat on the phone about it, PM me and we’ll arrange to speak.
Big hugs
xx