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Jun 17, 2020 05:50PM
Adding an update to this thread to see if conversation continues. I have just found out that I have been approved for the COMET trial that I applied to. It randomly assigns women with grade 1 or 2 DCIS to either surgery (+- radiation, +- endocrine therapy) or active surveillance (+- endocrine therapy). I was assigned to active surveillance, and am going to opt into endocrine therapy.
My preferred treatment changed once I had my appointments at a specialized cancer center. They found a second, small DCIS in the same breast (left), the largest is 2 mm. After ultrasounds and a MRI, they felt good that nothing else looked suspicious. Also, I was advised by my MO that my recent history of HRT could be a major part in fueling this disease, which I stopped using 2+ months ago. So, I have discontinued one bad habit. What's also new is that in my right breast, I have atypical hyperplasia, and this can be controlled by endocrine therapy. So, although I was adamantly opposed to endocrine therapy 3 months ago, after learning about my AH and the limited rads options for me, since I have small breasts, I completely changed my mind and realized for me, I have to live with the side effects of endocrine therapy because my breast tissue has disease and I'd like to avoid surgery if I can. I really want to keep the AH in check and endocrine therapy seems to be a way to do this without surgery.
I have been reassured that if anything changes in six months that looks suspicious, I will be biopsied, and I can pull out of the COMET trial if I like at any time. Also, they will kick me out if findings are suspicious :-) For me, my view is that I'd like to try the endocrine therapy for six months and see how my mammogram looks then. Ideally, I'd like to be able to ward off any need for treatment for 10 years, and hope that there may be new treatment options at that point. I'm concerned about having pain and other damage from radiation and surgery to some extent as I'm very active - golfer, aerobics and weight lifting.
Diagnosed at 56. Did active surveillance in clinical trial + Tamoxifen for 6 months, cryoablation in 02/21 due to DCIS progression. Stopped Tamoxifen, per provider's ok - turned prediabetic, poor responder. Weighing AI options.
3/23/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+
5/29/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+
6/30/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)