I would be really interested to hear from women who have had a bilateral mx and no reconstruction. This is the route I am thinking of taking and would really like to hear your experiences and thoughts. Did you choose this? Was it the only option? If it was your choice, do you regret it?
My story - I am 37, diagnosed a year ago, had bilateral mx with expander recon in December 2010 (I am BRCA1 hence the bilateral), recurrence June 2011 so had the expander removed and as much skin as possible taken from the site.
So I now have one implant and one flat side. Before the op I was keen to have both expanders removed so avoid being lopsided and I still wonder whether to do this. But my surgeon advised me to wait and see how I feel later down the line. I can’t have another expander put in again as I have since had rads, and I am not keen on an own tissue recon. Most of the time I am not bothered to wear my comfie and have not got round to getting the proper prosthesis, I just dress to cover myself a bit.
Hi
I had a bilateral mx last December without reconstruction. There would have been no problem with having it but it was my choice not to.
I wore softies (or nothing when it was too warm!)until July when I took ownership of my proper prosthesis. They made quite a difference compared to the softies.
I still vary things according to what I am doing or wearing day to day and often just go without anything. I am glad to have the choice.
I have never regretted not going for reconstruction and even though I still have the option open to me I know I never will. There were probably several reasons for making the decision I did. The big one was I felt that a bi mx was a big enough op for me. I also think the fact that I am older (64 at the time) may have been a consideration. Who knows what I might have done if I had been in my thirties. Lastly I am still the person I was - just without boobs and appearance has never been more important to me than who I am beyond that.
However it is personal to each individual and after weighing up many factors the decision folk come to will likely be the correct one for them.
Hi, I had a bilateral mastectomy in July 2008 and opted for no reconstruction. I have three sets of prothsesis, an ordinary pair, a stick on pair and a swim pair, oh and a pair of weighted foam, leisure ones. I find that most of the time I don’t wear any at all, it is dependent on what clothes I want to wear whether I bother or not. There is something strangely liberating about going breastless, but I don’t suppose it is for everyone. I must admit I do sometimes wish that I didn’t have to bother with prothesis, but on the whole I am content.
Lots of love to all
Jennie
HI i had bilatral mastectomy in september this year am still healing from op , have got prothsesis wich are ok and help the healing .
Am 46 years old so not realy a problem for me at the moment (but early days ) but to tell you the truth it didnt realy cross my mind as i just wanted the bl**dy c----r gone so can get on living again , but each to there own .
Would just like to say that before this happened to me i was clothes mad had hair done all the time but think now there are so many more important things to me , family , freinds , dogs , and me as a person this has been a real wake up call for me xxxxx bev
I was diagnosed with breast cancer 2.5 years ago when I was 45. I opted to have a double mx (risk reducing on one side)because the type of cancer I had was difficult to detect and I didn’t want to have to go through being MRI scanned every couple of years.
I wasn’t given the option of an immediate recon because I was having rads. But I’d already decided by then that I didn’t want to have one done.
Honestly - if I could wave a magic wand I’d love a new pair of breasts but I can’t face all the surgery particularly as I had a lot of problems last time with seromas and haematomas. I also now have lymphodema in one arm.
I was very much like Josie in that I was glad to get rid of the cancer and I still feel like that.
I do wear prostheses every day as it makes me feel more ‘normal’. These are much smaller than my own breasts were. I like feminine clothes and still care about my appearance but you know what, most days I completely forget that I’ve had a double mx. I’m back to being me.
I am married and my husband is 100% behind my decision. I don’t know what your situation is and whether that would have any bearing on what you do?
Jenny - can I ask you about the stick on prostheses. Do you have to wear a bra with those?
Hi, I’m banned from a recon right now and am unhappily very lop-sided.
I had a quick peek at some of the gallery pics from the breast-free site. I’m going for a bus soon so only looked at the unilateral images.
It seems that the folk in the pictures marked “unilateral” who seem to be happily lop-sided have small breasts and so the lop-sidedness is not huge. I’m sure that if *I* had one remaining boob that was neat and tidy, I wouldn’t feel so awful and mutilated either.
I feel safer wearing a bra, I believe there are stick ons you don’t need a bra with, but I have heard that they can slip a bit if you get hot and perspire. These Anita stick ons have a strip at the top which means there is not so much weight hanging on your shoulders and when you lean forward everything doesn’t come away from your chest wall. These are simple to look after as well you don’t need special cleaning fluid, just water. Also, a big plus, as long as the cup covers the prosthesis you can buy ‘normal’ bras. I got mine through the NHS, I just asked about stick ons and was given a choice.
Hope this helps.
Good luck to all
Jennie
Thanks very much Jennie, that’s the first time I’ve heard anyone explain how they work!
My BCN did tell me about a year ago that I could have stick ons if I wanted. I’m not that sure as my skin tends to react to things like sticking plasters and most types of creams etc - so not sure if either type of stick on would be suitable.
As I’m having shoulder problems I thought that if I didn’t need a bra I might give it a go but not sure there’d be enough benefit if I still need a bra. Elinda x
hi, i had a bilateral mast in 2008, with no recon. i have several pairs of softies, a pair of stick ons, which i call ruby and pearl, a pair of foam ones for swimming, but rarely wear any at all. i am much comfier without a bra, and if i do wear anything i tend to go for the softies, which i wear with a bandeau bra (its a bit like a giant headband) i have never regretted for a single minute electing to have both sides done, and i felt vindicated when they confirmed that there was a very very small tumour in the elective side. i go topless on the beach on holiday, i figure if anyone else doesnt like it, then they dont have to look!!! i am very proud of my scars, they are testament to what i have been through, and come out the other side…others arent so lucky. my philosophy is “be who u r, say what u feel, becos those that matter dont mind…and those that mind dont matter” in short, do whatever is best for u…u are the only one that knows what that is
Hi. I had a bilateral mx in September and am not considering recon, largely because I just want the cancer gone. PLus my cancer is genetic and 9 out of 10 women in the family have had BC. My left mx was prophylactic as there was a high chance of the cancer coming back. I am 41 and single but decided against recon. The option is always there for the future if I want it. I am happy with my prostheses but if totally honest I do miss my breasts but so glad to be at the end of treatment and I am feeling good again
Hi,
I had bilateral in march 11, one was advised and the other was my choice because of my family hx and my lifestyle. I didn’t feel I could manage lop-sided, and I didn’t often wear a bra, plus I do lots of swimming and outdoor stuff and didn’t want to be worrying about breast forms. I researched it very carefully, and decided I wouldn’t regret it whatever. Histology showed I had abnormal lobular cells in the healthy breast so that vindicated me anyway - a bonus, but I would still have been happy with my decision had that not been the case.
Initially I thought about recon, then researched that too. It’s not simple or easy, and my BCN warned me that I would need to be totally committed, and also prepared for it to fail. Great advice, and all too rare from what I’ve seen on here. I found breastfree.org invaluable, and started to think about the wider issues.
Now I feel good, and am fine with having no breasts. I’m thinking of getting a nice tattoo across the scars sometime this year. I started wearing softies and my breast forms, and got some swimming forms from Amoena which were great - I was very self-conscious in my swimsuit especially. But then I found I stopped worrying (I think this was around 2-3 months post-mx).
I haven’t worn my swim forms since July (I swim all the time), and last wore my proper breast-forms in August. Strangely, very few people actually notice, including my swimming friends. I would only wear my forms now when I had a tailored top/dress on for a posh occasion, purely because of the cut of the clothes.
Yes I miss my breasts sometimes, but I didn’t really have an option to have them as they were. Mostly though I forget about it.
Hi Josie
I’m 48 and about to have bilateral masts in a couple of weeks. I can’t have recon due to a pre-existing medical condition. I think I can live breastless!! I’m wanting to find somone positive and similar in age who actually does this. Is this you? xx
