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Nov 19, 2013 09:36AM
I'm due to go for my appointment at Mass General tomorrow to meet the surgeon and the oncologist.
Beesie, I just wanted to tell you that your post on Oct. 31st was very consoling to me. My DCIS (for now, anyway) is multifocal - one place .05cm - the other that was found .06cm. Estrogen and Progesterone negative. I don't know the ER status, but will find out tomorrow. It's also comedo type and high grade. I'd been reading before I read your post and the hormone negagive status along with the high grade comedo cells sounded like I wouldn't have a choice (and that might be a blessing, too, in some ways.) about whether to have a lumpectomy or a mastectomy. But in reading your post I see that DCIS options are different. What worries me is that this seems to be very quickly growing. I had a diagnostic mammogram in this breast in April and no cancer was confirmed. By October it's confirmed by biopsy and aggressive.
Maybe the recommendations will be so firm that I won't have to decide, because I think that in that case, I'd do what their experience told them was best. But I want to be prepared, so am reading all I can about your experiences.
Of course, in the short term, even if I'm in a high risk group for the DCIS coming back as IDC, the lumpectomy and radiation now seem so much easier to accept and deal with. But my sister, as I've told in another thread, went that route (although I believe her cancer was already invasive, because the took lymph nodes which were found to be clear and they wouldn't have taken them if it had been pure DCIS). She was more advanced than I believe I am now (although the lumpectomy will tell more). She had a recurrence of cancer 11 or 12 years later - only discovered last year and this time it's more invasive. Her current doctor believes this is a totally different cancer - for one reason it's hormone receptive this time and she's on meds). So, her recurrence may not have anything to do with her choice 12 years ago of not having a mastectomy at that time.
Our mother had breast cancer in 1978 at age 60, had an immediate mastectomy and radiation (at Mass General where I'm going). She had no recurrence in 33 years and just died two years ago. I know from talking to Beesie and Ballet that my situation is totally different from either of theirs physically and that treatment will be suggested based on my own personal situation. It's more that I'm identifying with each of them emotionally and by their experiences and of my reactions to their experience if that makes sense.
For instance, my mother had a mastectomy with no reconstruction - I don't even know if they did it in 1978. She seemed to handle it fine - was content with falsies - and they didn't even have to be professionally made - she would stitch a circle of panty hose fabric and stuff them. They were always creeping out of her pretty blouses and she would laugh. As you said, though, Beesie, I think that since it's available, I, myself would want reconstruction because - well, I can't even say why! I wish I'd be happy with no reconstruction, but I can't seem to accept that. It has nothing to do with vanity - I'm not fussy with my appearance. You'd think that since I knew my mother was happy despite one side flat, and because my husband wouldn't care, that I'd be able to accept it. I guess I wouldn't even care if I were flat-ish if I had a nipple and areola. Maybe I'd lose lots of weight in the future and both sides would then match (I'm overweight by about 30 pounds now and a C cup), anyway.
So, since I'm torn (at this point, anyway, until I hear what the doctors say tomorrow) would it be sensible to go ahead with the lumpectomy and wait until the pathology tests are back about whether there is anything else there or clear margins? And THEN be prepared to have the mastectomy with no misgivings? Or do women usually know upfront what they are going to do and just go for it?
11/13/2013, DCIS, <1cm, Stage 0, Grade 3, ER-/PR-, HER2-
12/29/2013 Lumpectomy: Left