I had WLE three years ago. My breast was very big and they removed over 600 grams. Since radiotherapy I’ve had serious lymphoedema in the now much smaller breast. I am worried about the strain on my back. I had two smallish tumours and one lot of DCIS and I feel I ought to have had a mx from the start - in fact I suggested it myself.
I have thought about having the other breast reduced. I am told it’s a complicated operation because the breast has to be the same height as the other, and if I lose or gain weight or the lymphoedema changes, it will no longer be. I had 3 weeks of MLD twice a day and was given a weighted prosthesis, but it turns out that that makes the lymphoedema worse.
MLD once a week - I am in Germany so I can get it, apologies to those who can’t get it so easily - I don’t like having my breast massaged 45 minutes and should actually be going twice a week. I also spend time doing simple LD to myself and massaging the fibrosis, and I am told I should bandage myself every night - haven’t yet succeeded in doing it properly.
So what if I had an mx of the treated breast? Or I would love a double mx. But if the lymphoedema was no longer there, I could at least wear a weighted prosthesis.
I realize I might never get this paid for, but what I would like to know is: how do people feel after mx? My therapist says some women have a huge rock-hard diagonal scar and can’t walk upright properly. A gynaecologist I spoke to said I should not have the reduction OP because I am not ‘suffering’. But just because I go swimming without a prosthesis doesn’t mean I like spending so many hours a week on lymph problems.
So, aside from the financial problem, would anyone advise me against some kind of operation? I am not rushing into anything, and I am waiting at least till October which is three years after radiotherapy, in the hope the breast may recover.
Many thanks for any experiences.
How very odd for the therapist to say that people can’t stand up straight after a mx! Never heard that one before! It isn’t true.
I was back driving within 2 weeks of my mx.
I had a mastectomy to remove the breast with cancer and then tried to live with one breast for a year and hated it. So I had the other removed (after much deliberation over reconstruction or reduction).
I have some keloid scarring but that is being dealt with by the dermatologist - otherwise it was the best decision I have ever made to have both breasts removed. I use Amoena contact adhesive breasts -but most of the time I don’t wear anything at all and am extremely comfortable.
It is impossible to predict how you might feel about mastectomy because everyone has a different emotional attachment to their breasts. breastfree.org is a brilliant resource you might like to look at. A very intelligent look at life without breasts. Some people (male medics particularly) seem to think it is the end of the world to be without boobs - certainly not my experience and I wondered if I was a bit odd for not being cut up about it!
Good luck with whatever you decide - and if you really want a double mx don’t be afraid to push for it. It is your body.
Great - thanks very much, very useful. I think the therapist has one patient with such a scar, but that doesn’t really prove anything, I just thought I’d ask. I will obviously have to consult with some surgeons anyway, and they will presumably be able to advise me too. I would like to know if most of the lymph problems will be solved - have none in the arm and I only lost 5 sentinel nodes.
I don’t care about losing my breasts, I am just wondering about the physical effects. It seems to me it would be easier to have a mastectomy than a complicated reduction surgery.
Thanks very much for the link.
Sorry you’ve been having a rough time. I had a WLE in Jan, then a bilateral mx on 8 March this year - one breast had extensive DCIS, the other was prophylactic. I’m not having a reconstruction although I’ve been offered one.
I feel fine about having the mx, I had a few days of not feeling that good, then a few weeks of discomfort off and on and some restrictions on my movement which cleared up after 7 weeks. I’m now swimming lots and back at work. Like MsMolly I don’t wear breast forms very often - I’ve worn my anita ones twice - once to the pub and once to a wedding - and my swim forms when I go to the pool but not when I swim outside with my wetsuit.
My scars are fine, I’m using bio oil daily. There’s no hardness, but there was after my WLE which left the whole breast like a rock for a month.
Over all, I feel I made the right decision. I can easily do all the things I do where breast forms would be in the way, and can also look as though I still have breasts when I feel like it. I was a little self-conscious at first, but now I forget I’ve lost my breasts most of the time! I too think breastfree is an excellent site - that was the one that made me really think about what I was doing and that decided me not to have the recon at all.
I wish you lots of luck with your decision and with whatever you decide to do. There’s a lot of pressure on women to have recon now, and I think it often becomes a kind of life-line so that you don’t have to think about losing a breast at all. Not necessarily the best thing for everyone - it’s sometimes better to just make a decision and feel good about it regardless.
Big hugs, Lynne xx
Thanks for the details. It does sound doable. That’s quite recent, too.
About reconstruction - I have never considered it. But my self-help group was talking about it this week. They think that German doctors always push for reconstruction simply because the health insurance pays for it, and people go into it without thinking it through.
The only reason I was interested in the Amoena breast form I was given was because it weighs 400 grams, although it doesn’t seem heavy, and I thought it would be better for my back. My current therapist says I will most definitely get serious back problems if I am so lopsided and I must have the other breast reduced (I think she probably exaggerates!), but I noticed that when I wore the breast form, the breast looked redder and more swollen. I admit it does look better under a striped t-shirt than without.
Yes, recon is being pushed here in a lot of places. It’s the right thing for some women I’m sure, but certainly not for all, and it often isn’t straightforward. I’m guessing reduction isn’t a picnic, but it sounds preferable to bearing the weight of the same sized form on the other side.
I think from talking to other people the weight of breast forms is really significant if you’re a larger-breasted person. I’ve got really light ones, and wore them to a wedding on saturday where they danced and ran around a lot - hardly noticed they were there and I’m not used to wearing them (that was only their second outing). Ditto for the swim forms, I swim crawl and they stay where they are and don’t interfere at all. I think my real breasts were far more trouble for sports! (They were a 38c, so not that big).
Let us know what you decide and how you get on xx
Thanks again. Yes, I will report back, but it will be a long time - once I talk to doctors, I will still need to see if I can get the health insurance to cover the operation. I will only be doing the reduction, I think, if the situation with the lymphoedema improves in the other breast, since that’s what’s driving me mad at the moment - hours every week seemingly without sense. But it may be that a mastectomy would not solve the lymph problem but just move it.
I have been secretive about my breast size because I only have German bras here - 115 cm E, and I think that is probably 46E. The partial breast form is OK by weight, but you’re surely right, a whole breast form would weigh a ton (like the breast!).