Small benefit of taking Tamoxifen


Has anyone decided not to take hormone therapy, Tamoxifen or Letrozole because the benefit is minimal? 

The predict tool shows a very small benefit at 0.5-1%.  My surgeon is definitely pro Tamoxifen or ovarian suppression and Letrozole, whereas the oncologist feels there is a very small gain.   I also have a pro thrombin gene which puts me at greater risk of developing blood clots so concerned about DVT although they would prescribe me an anticoagulant.  I had surgery in March, radiotherapy in May for 13mm in RH breast strongly ER positive and HER negative invasive ductal. 


I decided not to take tamoxifen when I was diagnosed in December 2003 with grade 1 cancer, focal DCIS after having a history of breast pain and then atypical hyperplasia. In late Dec 2003 I had a segmental mastectomy of my left breast, and fifteen sessions of radiotherapy. I then decided not to take tamoxifen as I wanted to put cancer behind me, and the size of my tumour was less than 1 cm so the Predict Model gave me a very good chance of being alive in 10 or 15 years. Well it wasn’t wrong! When I finished treatment I was 48 years old.

At the age of 66, about 19 years later, Feb or Mar 2022 I found a new lump, diagnosed in August 2022 as a new primary in the left breast.  This time I couldn’t have breast conservation again as I had already had the full amount of radiotherapy possible in 2004

I now have breast cancer of no special type grade 2, and one intramammary node with metastatic cancer cells in it. No other node involvement as they had taken them all out in my arm pit during previous surgery. If they found any, I have my doubts as I seem to have had quite a lot of intramammary nodes which they discovered in 2003. they are fairly rare and some research seems to think it’s worse having breast cancer if you have them.

As I didn’t choose what to have, I don’t know. I also don’t know if not taking tamoxifen in 2003-2013 has made any difference to my new diagnosis in 2022. I was premenopausal from 2003 to 2007 or so, when at 54 I finally made it to the menopause. 

Maybe it didn’t make any difference, I would have had to pay for my prescriptions in 2004, and I was at work so I didn’t want to have constant checkups, etc so that also made me reluctant to stay in treatment. You will have to make up your own mind.