i was diagnosed 6months ago, had the chemo and lumpectomy but they found another area of dcis so now it seems a mastectomy is the most sensible option. thats pretty much decided, but what im confused about is whether to have a bi-lateral mastectomy and just be done with it. my surgeon thinks it might be a good idea for the long term (im only 24) but really its my choice. i was set on doing it just so i dont have to worry but now im confused, just been to see my onc and she said maybe wait as i might regret it. help!
have ladies out there who hav had it done regretted it? - or any that nearly did but didnt and now wish they had? or any problems (emotional, physical, whatever) with having the bi-lat that i may not have considered? if i have it will be having tissue expanders to be replaced with implants in 3months. what about the issue with them matching? - asthetically is it actually better to have them both done?
any advice really would be much welcome. am seeing my surgeon tomorrow.
oh and ive had the genetic test (no history but as im so young…), but results wont be back for a few weeks - should i wait for them?
Sorry that you are going through having to make such a difficult choice at the moment. Each person is different in what they ultimately feel is best for them, so there is no one right decision for all.
I will give my story if it helps. I was diagnosed with a large tumour and palpable nodal involvement and had chemo before surgery (like you from the sounds of it). I actually asked about having a bi-lateral mastectomy but this was dismissed by my BCN. When it came close to surgery, I found out that the surgeon would have been happy to do a bi-lateral mast but it was now too late to schedule the extra slot needed to do the other side (Grrrrrrr). I then had to wait a further year (a couple of scares caused postponements) before I had the mast on my remaining breast. The anesthetist on the second op said she thought I was making the right decision which was a last minute boost to confirming that I was doing the right thing.
The factors I used to make my decision was based on the chances of bc in the other breast (for me 30%), my large breasts (I had missed a large tumour and didn’t trust myself and not wanting to be lopsided. I in fact choose not to go for reconstruction (someone recently posted a link to this site breastfree.org which is a great site for people not wanting reconstruction), but that’s just me.
I am now much happy not to have to worry about lumps and bumps in either breast and as an added bonus can choose my own breast size.
Good luck with your decision and if you really aren’t sure you could always have it done later (I would have preferred to have got over in one go). It’s 4 years since diagnoses (4 days ago) and I’m still happy with the decision I made (and still NED).
Hi there
I’m sorry you had further problems with that bloody disease. I was diagnosed at the end of july (i’m 34), had lumpectomy, there more cancerous cells were discovered, mastectomy was advised. I decided to have my good breast removed as well, as I have lobular cancer, which has higher probablity of spreading to the other breast and is very difficult to detect. So i didn’t want to live the rest of my life fearing that there might be something in the right breast which scans and mri can’t pick up. Also, emotionally, i think it would be better to have two similar reconstructed ones, although i know for lots of ladies it is important to keep one. I don’t know, i didn’t see much difference between losing one or two breasts. It was difficult to get used the idea of mastectomy of course though… So I had my surgery last week, b/l mastectomy and of course the time will show whether it was right or wrong, but i feel safer now. Also, feel more confident wearing the bras with similar sized feelings…
Most importantly, be sure in your decision, it is your body after all, and good luck and get well soon
take care
Tato xx
I was diagnosed with 2 tumours, 1 in each breast. And because I’m young (33) the consultant surgeon said to me that if I were a member of his family he would be strongly advising me to go for bilateral mastectomy because the chances of me being diagnosed again if I didn’t were just too high.
I took his advice, decided against recon for now as I had chemo and rads to do and didn’t like the idea of any of the recon methods and 6 months post surgery I feel very strongly about the recon… I don’t want it. It’s taken some time to get used to my new body shape but now I’m nearing the end of chemo and getting over the shock of diagnosis I’m quite happy really., no need for boobs personally (I’m a sporty kinda girl and they were always in the way to be honest, and I hated having cold nipples, not a problem now!).
So it really depends on how you feel about your boobs in a lot of ways, but I don’t regret it not one bit. I wouldn’t have done it for cosmetic reasons and I’d rather have never been diagnosed but for me security in the future was 1000 times more important than boobs. I’d have been grilling your onc about why she said that actually. Why and what exactly does she think you’ll regret. I would personally find it unprofessional to have an onc say something like that without explanation unless she did of course.
Good luck what ever you choose, there’s no right or wrong here, just what’s right for you. I would certainly respect you if you feel differently to me but I’ve also got the impression from some circles that some people rally do feel breasts are more important that survival which to me speaks volumes about how body image is perceived.
Just for the record I don’t even wear prosthetics most of the time, just go out flat chested, hardly anyone ever notices and if they do they don’t say anything (but I wouldn’t really care anyway).
This is a hard decision, weighing up the consequences against the risks and you’ve already been through alot of surgery.
I had bilat mx in May with immed recon with expander implants. There was a tumour and DCIS in one breast so I needed mx and DCIS in the other (which could have been treated with lumpectomy). By then I had lost faith in my body and decided it would be cleaner and safer to have bilat.
A couple of things to add to other comments. Even a bilat mx does not remove all risk of a recurrence as there is always some breast tissue left behind. I was told the chances of a good recon result were high with bilat. The 3 months quoted to me for replacing with the implants has now become “at least 6 months before we would discuss it and add you to a waiting list”. The expanders are uncomfortable I feel in limbo waiting for the next op.
Hope your appointment goes well today and you’re given enough info to make your decision.
thankyou so much for your advice ladies,
so sorry for late reply, have taken a bit of time off work and dont have the internet at home so access to the net is a bit restricted at the mo.
my app was good, talked through everything, again!! still not completely decided but the op is now not till 21st oct so i have a bit more time than i thought to make my mind up - tho am swaying towards having them both done.
having now spoken to a couple of ladies who have had it done one of my main fears is now the whole numbness thing - they have said that the whole area is pretty numb - let alone just losing a bit of sensation. do you all feel like you still ‘own’ that part of your body? or is it more like just add ons?! teh whole idea that i wont hardly be able to feel a thing in teh whole area really freaks me out…
so sorry you have all had to go this as well, but your comments all sound really positive in your decisions.
thanks again for your thoughts
cesca xx
ps, misha, how come you now have to wait 6months? and in what way do you find the expanders uncomfortable? - arnt they very similar to fixed volume implants in that respect?
I guess the 6 month wait is just because of NHS resources being stretched. Once the cancer is controlled, we have to be lower priority than newly diagnosed.
I think my discomfort is due to a few factors - the implants were expanded more than I wanted, the ports are still in place and feel hard and tender, the breasts still swell up before a period.
After 6 months the numbness is going down for me, the biggest area of numbness was actually around the armpits a a little around my back (the breast tissue goes around the back slightly). It’s not full sensation yet but it’s not odd anymore. For the first few weeks if somone tapped me on the back I’d jump but that went really quickly .
I’ve read that it takes longer for others to get full sensation back and I think part of the reason I have been healing so fast is maybe asking more of my body than most, ie I’ll tolerate a little pain or discomfort if I get to heal faster. But again I haven’t gone for recon which I understand does take longer to recover from.
There was a study published in the states recently that’s more critical that I expected that you might like to read to help gain a balanced opinion but do remember that surgery and treatment will be slightly different out there:
ladies,
thanks again so much for your advice, am still deciding! but it has certainly been a big help reading about your experiences. thats interesting - and scary! - reading youve got there angie! but thanks for flagging it up to me, always good to have a balanced opinion like you say.
xxx