Topic: New Here, Introduction

Kate

I had bi lat mas so I would not have to take it or do rads.

cat

Hi Kate! Sorry you are dealing with this! I am just echoing Cat when she said she did a bilateral so she wouldn't have to do radiation or Tamoxifen. That is exactly the decision I arrived at once I did all my research. For me, the possible risks were just too much for me. After all, SOMEONE has to be the 1% you hear about! The bilateral hasn't been that bad for me, anyway. I was never attached to my breasts and really, since I have these expanders in, I feel so much better about my self image--I am going from DD to a B or small C once all is said and done!! No more bouncing around and being in pain. I am going to take up running again, after my exchange in June. Please feel free to PM me anytime if you need any more info or just want to chat! Good luck to you!
Anne

Hi Kate. I, too put off tamox for awhile because of fear. Honestly, it's not a big deal. I am 46 and pre-menopausal. My cycles are regular now, but lighter. They weren't regular early on with tamox. I do not get hot flashes, but I get mild night sweats a few times a week. I have not gained any weight, although my docs said it wasn't a side effect in most women. I have been getting a vaginal us every 6 months to check my lining as well as the fibroids I had before DCIS. My docs told me to try it. If it was a problem, get off. The risk of stoke is very rare, especially if you are an active woman. The risk of uterine cancer is about 1 in a thousand, I think, and that is mostly post-men. women. The hot flash issue is only about 30-40 % and with many women, they are very mild. I know tamoxifen isn't an absolute with Dcis women. Many docs give it, many don't. I think maybe try it for a month or two. Honestly, it's really been ok. Hope this helps. Nada

I have chosen to not do rads or take tamox.  Instead I had bilateral in Jan and I am having total hyster with ovaries etc.. removed on May 20.  I was er/pr+.  It will be surgiacal menapause for me!  I felt I did not want to take any drug that had possible cancer risks.

I did have an unusual case in the fact I had 11 current tumors, most were fibroadenomas tha tI have been dealing with since I was a teen.  They feel they were estrogen driven.  Total hyster just makes more sense for ME.

Hope that helps!

Best to you,

Daniella

Kate

 As everyone here as pointed out it is a personal decision. Noone has exactly the same history or circumstances. I was also diagnosed  with DCIS in sept 07 after excisional biopsy for a small area of microcalcifications. I opted for a unilateral mastectomy largely to avoid rads( and because I was convinced  a lumpectomy would be nearly a mast in my case). I haven't had the tamox discussion with anyone formally. When I originally opted for the mx- the surgeon said I wouldn't need anything else. I disliked her enough to never go back after my initial post surgery visit. Unfortunately because I had no margins I had to have rads. It was the rad onc that pushed for tamoxifen ( she also was the one who wanted me to see an onc). I don't want tamoxifen right now because I have the periods from hell and don't want the risk of increased lining, fibroids, etc. I am not willing to do the constant monitoring that it would require. I know Tamox would decrease my odds, but I can't get real stats for my risks of recurrence. I also know that odds are just that- odds. I could do nothing and be completely clear or do everything and still have a recurrence.  I think with the mast and the rads the only thing I have to worry about is the remaining breast. When I see my GP this summer I'll talk with her. I may change my mind, but for now I'm not taking anything. I did see an oncologist, but she got so sidetracked with my anemia and all the tests she wanted to do for that, I didn't schedule a second appointment with her.

Hi Daphne. Yes, tamox may make your fibroids grow larger and thicken the lining. It's an anti-estrogen in the breasts but not anywhere else. Not everyone has an issue, though. I haven't yet, but I am still in the first year. I get a vaginal us twice a year to check all that. If they grow crazy, I will remove them. I have a huge family history of fibroids; every female in my family over 40 has had to get them removed. I am 46. If I am over 48 when this happens, I will take my ovaries. Nada

I'd ask for another explanation. as a math teacher 10-12% chance of recurrence absolutely implies 88-90% chance of no recurrence. Is it 10-12% in either breast or just the treated one.

Trish

Hmmm,that's scarey-perhaps that's what the surgeon meant. I was originally told that the chance of recurrence was 10-12% and that tam. reduced it by half.

reducing the odds by 7-8% does not mean, you have 90+% chance of it coming back. You need to know what the originial chance of recurrence was. If the chance of it originially coming back was 30% than a 7% reduction is .07 (30) or 2.1% less.( new stat about 28%) I had usually heard a 40-50% reduction for tamoxifen, but if the originial risk  of recurrence is only 14% a 50% reduction is 7% less

The stattistic get confusing

trish