Hello! New here and grappling with a fairly recent diagnosis of DCIS. I'm still waiting on the final results of my third biopsy to find out how wide-spread the area of DCIS is, and whether I will actually have any say in the treatment options (I have very small breasts and a potentially pretty wide area of DCIS).
I'd really like to hear from others who have had one or the other, or had a choice of treatment at the time, about what you would do now in hindsight. Are there any aspects of the treatment that are particularly hard to deal with or that you didn't expect?
My main issue at the moment is that I don't quite trust the DCIS diagnosis, or more accurately, that I am acutely aware of quite a large proportion of cases where it turns out to be more after the operation. I am quite tempted to just get rid of the whole breast for peace of mind. Am I being foolish?
Thanks so much for any advice!
That helps loads, love the support. Thank you and hugs x
I'm probably much older than you but I recovered very quickly after lumpectomy. No pain at all, but discomfort obviously. The first couple of days I was tired, but not bed-bound by any means, and I was driving again and doing most normal stuff a week later. I managed to avoid heavy lifting and stretching my arm too much, because I was told not to do these things. I didn't feel that I couldn't have hung up the washing, but it would have been uncomfortable, although I did all the exercises that I was prescribed without any difficulty whatsoever..
Good luck.
My breast surgeon told me annual mammograms until I am too old to need them. Live in Florida so guidelines are diffferent. Happy New Year!!
Barbara
Hi there x first of all, lots of hugs. It was my worst nightmare come true when they found my dcis. So just to let you know I am in your corner and you will come out of this stronger.
About the decision bw lumpectomy vs mastectomy, I didn't get much of a choice. I was all set for a lumpectomy in my mind but the further tests revealed it was multi centric and multi focal ( so not just in one quadrant, but various quadrants of same breast and also many microcalcifications within the same quadrant). No cosmetic result could be achieved by lumpectomy, all in all more than half my breast was dotted with tiny microcalcifications here and there. So mastectomy it was.
Don't worry and take it easy. Your further tests will aid in making your decision. The doctor will advise too x
Thank you so much for replying. Mastectomy feels like such a huge surgery, but I think I'm getting my head around the fact that it's probably the safest way to rid myself of the cancer completely. It's good to hear from other people with similar experiences.
Be guided by your surgeon. I only had 11mm of HG dcis 7 years ago so had good cosmetic result with lumpectomy.
On being diagnosed with DCIS I had a lumpectomy. The surgeon said there was a 25% chance that he would not be able to remove the DCIS entirely, since he can't see or feel the diseased cells. At that point mastectomy wasn't really presented as the favoured route.
As it turns out I did not get clear margins. Then the choice was between a second excision or a mastectomy. Much discussion about reconstruction options. No advice at all, just a presentation of the choices. For a while I thought I'd go for a mastectomy, the surgeon having said that re-excision only had a 50% chance of success. I didn't want reconstruction (the extent of scarring and the seriousness of the surgery just put me off),. But then it transpired that mastectomy necessarily comes with sentinel node biopsy and that didn't appeal - the chance of lymphoedema is very small, but it's incurable. So I've just had a re-excision (day before yesterday) and now have a six-week wait to know whether it was successful. (How can it take six weeks to stick a lump of meat under a microscope???)
If I still don't have clear margins, it's going to be a mastectomy anyway, I guess.
I had naively hoped that retaining at least some of my breast and the nipple would mean I'd retain sensation. But it seems that's not the case. The skin is largely numb, there is a solid lump of scar tissue inside the breast and the nipple is still mainly just sore. I don't know if that improves over time.
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