Hi there! I’d love to hear your feedback.
I was diagnosed with Stage O DCIS - all Grade 1. Less than 2cm. Clear margins. No other boob issues as seen on mammo, MRI, u/s and no family history.
I’m almost 50 and perimenopausal. I was lucky enough to join a clinical trial in which the Oncotype DCIS was performed on my cancer cells. A low risk of recurrence (i.e. - less benefit to radiation) is a score under 39. My rads onc was expecting a 7/8% recurrence risk.
Amazingly, my score was ZERO. No, it wasn’t an error and yes, people (though rarely) get a zero score. I’m waiting to hear what percentage recurrence that is but my internet meanderings have noted 3-5% recurrence risk in 10 years. Essentially, I am the lowest end of the lowest risk category. So if we do the halfway point of 4%, thats a recurrence risk of 2% DCIS and 2% invasive.
My oncologist said Tamoxifen is a 1-2% benefit and take it or leave it (this was before I did the test though).
I feel SO WEIRD doing nothing (which is untrue, because I did have surgery) and I very much recognize the beneficial position this puts me in and I am so grateful. I also know my case bodes well and adds important research for the future. I hate that I am thinking and overthinking about this. I DON’T want to take tamoxifen because I know I’m sensitive to meds and this could be a tough go (baby tam 5mg/3yrs). I know I could just try it and stop it…but UGH…!
Has anyone been in this position or refused Tamoxifen with this low grade of recurrence? I really really need to hear from women who’ve gone down this or a similar road because I’m the only one of my friends who’s had this.
Thank you so much for your help/input/advice and I am sending you all the best best vibes.