Should I agree to Tamoxifen if...

bigshirley

I am almost 3 weeks post BMX surgery.  My diagnosis was stage zero DCIS.  During my surgery, they took out 2 lymph nodes that tested negative.  When I went to see my surgeon today, she said that the cancer I had was estrogen positive?  I think that's how she put it.  Anyway...she is referring me to an oncologist to see if they think it would be good to put me on Tamoxifen.  Here's the thing...I have been reading about this, and it seems to me like the potential side effects make it not worth doing, especially since the doctor said my risk of recurrence is extremely low.  I don't want to get bullied into taking this drug.  Any advice?

Annette47

I would ask specifically what your risk of recurrence is.   Tamoxifen generally reduces that by about 40% (according to my oncologist).   From there you can see if the amount of risk reduction makes it seem sensible for you to take it.   

I probably have a higher recurrence risk than you, but my MO said the main benefit I personally would get from Tamoxifen was the protection against getting cancer on the other side, as my other treaments have already reduced my recurrence risk for this cancer to low levels.    After a discussion with him, I decided to try it, with the knowlege that if I have a lot of trouble with side effects I can always stop (the more serious, life threatening side effects according to him are incredibly rare, so don't concern me as much as the "quality of life ones"), but as I said I would guess that both my risk of recurrence of this cancer as well as the chance of a second cancer on the other side are both significantly higher than you would be facing after a BMX and pure DCIS, so your decision might end up being different.

Beesie

bigshirley, if your final diagnosis was pure DCIS (Stage 0) and if your surgical margins were clear, then you should have no risk of distant recurrence (i.e. mets) and only about a 1% - 2% risk of local (in the breast area) recurrence.  Most oncologists and experts agree that such a low risk does not warrant taking Tamoxifen. For women who've had a BMX and have invasive cancer, or a combination of DCIS and IDC, their recurrence risks - and particularly their risk of mets - might be considerably higher and that would change the recommendation.  So the "no Tamoxifen needed" recommendation is specific to those who have DCIS only. 

Here are a couple of threads in the DCIS forum where this has been discussed:

Topic: Is Tamoxifen needed after a BMX?

Topic: Should I be taking tamoxifen?

It will be interesting to hear what your oncologist says. 

Katko

I  had biopsy  results were DCIS...estrogrne/progesterone receptors positive 

Lumpectomy ...margins mostly clear with very small breakthrough..now sched for snb. if nodes clean,

My  future tx plan is supposed  to be Rad.and Tamoxifen. I am post menopausal and thought tamoxifen was for pre menopausal women. I was told by my surgeon prior to lumpectomy that I would be put on an Aromatase inhibitor. I am leary of the Tamoxifen....Anybody with comments?

mawhinney

Try to go to your appointment with an open mind. The oncologist will review all your tests & your  final biopsy results and then possibly recommend a drug or not recommend a drug based on all your results. If a drug is recommended ask what the benefits of the drug are for your particular situation vs the possible side effects.  Please remember that everyone experiences the possible side effects.  If a drug is recommended, you might consider trying it to see how you body reacts.

Your oncologist may want to order further testing & evaluation before developing a treatment plan. At first it was thought that I had a low recurrence rate but further testing indicated that I was in a high risk bracket. Thus, my course of treatment changes.