Bi-lat Mx for DCIS -anyone take tamox after?

After my 2nd abnormal ADH biopsy I was put on tamox, 6 months later my diagnostic mammo showed suspicious spots for the 3rd time in 2 yrs, the biopsy showed DCIS and I opted for bilat mx and was taken off tamox since my chances of developing BC for a 2nd time was around 1% and tamox would reduce it to .5%, I couldn't see that it helped that much so I stopped taking it. I was glad to not have the side effects that I was having.

Sheila

If you had pure DCIS and had a bilateral, your risk of recurrence or a new breast cancer is likely only 1% - 2% (assuming acceptable margins)  Tamox could cut that in half, at most.  So the benefit would be 1% at most.

If you take Tamoxifen, if I recall from my examination of the clinical trial data, there is about a 50% - 60% chance that you will experience quality of life side effects such as hot flashes, vaginal discharge or bleeding or various other less common side effects.  There is also about a 1% - 3% chance of serious side effects, such as stroke, deep vein thrombosis, endometrial or uterine cancer.

That's why Tamoxifen usually isn't recommended for those who have DCIS who have a bilateral mastectomy. However for those who have DCIS but have lumpectomies, the benefit/risk equation changes, since there may be a greater (sometimes much greater) risk of recurrence so the benefit from Tamoxifen, in terms of reducing this risk, is greater.  Similarly, for those who have a bilateral but have invasive cancer, the benefit/risk equation also changes, since Tamoxifen is effective at reducing the risk of distant recurrence (i.e. mets). 

 I have been dx'ed with DCIS since 9/10-am going for 2 more biopsies tomorrow- I told the surgeon the minute I met her that I just want them OFF-I am so encouraged that some others have had bilat mx with DCIS- I mean at 56 who sees me nude anymore? I can tell you 2 of us , me and the woman in the mirror- I have looked at the mx bras, prostetics etc. and they have changed since my mom was in this boat. Did your insurance pay for the bilat or how did it work.? I don't want more mammos, MRI's, bios-pathology reports- let's just get to it and let me get on with my life---esp. while my nodes are clean (and I am praying that they are clean under the microscope!)

Same here-the insurance company was a bit iffy with the Alloderm, but my plastic surgeon wrote something that had them cover it. I had no problem with the insurance paying for my prophylactic side because I had one side that had DCIS and a strong family history. No tamoxifen for me. All I do is still see my plastic surgeon regularly, as I am still in the reconstruction process and my breast surgeon every three months. They usually don't recommend tamoxifen for bilateral and DCIS because the risks outweigh the benefits.

oh-- finally I am just settling down to confusion and wait- more unanswered questions-more delays- more time-time-time

I swear if you ladies were not here I would have gone in the bathroom and preformed self-surgery- well ok maybe not, but this is not getting more clear from the medical  professionalsBUT from you experienced angels- thank you!

melissa

I had bilat mx 5/1....has left with "dog ears" I had skin under my arms and under the incision site that were in the way when I moved my arms..right one real bad.  So last week had PS fix.  He leveled out my chest so it is so bumpy and lipo under arm ect.  It feels so much better...sore but better.  I had no reconstruction.