Tamoxifen for life?

Tmh0921

Hi level summary... I was Dx with IDC in 1999, and then ADH in 2016. I had taken Tamoxifen in 2000, and started taking it again in 2016. Both my oncologist and surgeon have mentioned that I may end up being on tamoxifen (or an AI later) as a preventative for life due to my age at original Dx and risk of a second BC. I'm 2 years into my latest round of Tamoxifen, and while the side effects have stabilized and are manageable, it's hard to think of staying on this type of medicine forever. Anyone heard of this?

During my Oncology visit today, I did ask what the likelihood of my ADH progressing to BC and he indicated that with the Tamoxifen it was relatively low. With the frequent monitoring, even if it does, we'll catch it early. He also mentioned that current studies (need to ask him for links) are suggesting that more women with ADH should be put on Tamoxifen prophylacticly.

nonomimi5

Tmh - I think for ADH, Tamo is the correct protocol, specially you are so young. Did you get an Oncotype Dx for your IDC? Some new medical breakthrough may happen so nothing is forever. Be glad your Onco has this in control and will be monitoring it closely. I just started taking Tamo and I know I may need to take Tamo or AI for a long time but I rather be doing something to prevent recurrence than do nothing. Eat an ultra healthy diet, detox and exercise and sweat away the toxin in your body from the meds. Good luc

Tmh0921

Unfortunately, they didn’t have oncotype testing when I was diagnosed with IDC, and HER2 testing was relatively new, so I don’t have information on either of these for my original tumor.

I knew I was headed for another round of Tamoxifen after my ADH diagnosis, but I assumed it’d be the standard 5 -10 years. I hadn’t heard of the concept of “Tamoxifen for life”.

Don’t get me wrong, I love my surgeon and oncologist. They’ve always been on top of my medical treatment. I trust them explicitly