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Apr 7, 2008 11:38PM, edited Apr 7, 2008 11:39PM
Leslie, my diagnosis was more 'severe' than yours, since I had multifocal high grade DCIS and a microinvasion. I also only had a single mastectomy. My surgeon and my oncologist both agreed that after the mastectomy, my recurrence risk is approx. 1% - 2%. I've done tons of research on this and a 1% - 2% recurrence rate after a mastectomy for DCIS seems to be what most studies have shown.
For that amount of risk, my oncologist recommended against taking Tamoxifen. He did say that I might want to consider taking Tamoxifen to protect my remaining breast, but he actually recommended against it, saying that he felt that for me, the risks would outweigh the benefits. Again I did a lot of research, and I reached the same conclusion. Tamoxifen is not without risks (as well as possible quality of life side effects) and I don't feel that the benefit that I'll get from Tamoxifen warrants exposing myself to those risks.
Leslie, in your case, you've had a bilateral, so your risk of a contralateral (i.e. other breast) BC should be very low. The one factor that goes against you is your age - the younger you are when diagnosed, the more likely it is that your cancer may be aggressive. But you had low grade DCIS, which is non-invasive, and since virtually all your breast tissue has been removed (with your bilateral), I'm a bit surprised that your oncologist would put your risk to be as high as 10%. There's always a little bit of breast tissue left after a mastectomy, so of course there always will be some risk, but 10% is on the high side. It must be your young age that is driving that.
If you really aren't sure that you want to take Tamoxifen, my best advice is to get a 2nd opinion from another oncologist. See if another oncologist also puts your risk at 10%, and if he/she also recommends Tamoxifen.
Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke