37 year old, need advice on stopping hormone therapy early (estrogen blockers).
Hi everyone! I am looking for some advice or anyone who is willing to share their personal experiences (or studies you have found )with what I’m considering. 💗
I was diagnosed at age 36 with ER+, PR low +, HER2-, Ductal Invasive Carcinoma, and DCIS in my right breast last June of 2022. My tumour was a grade 2, and was 2cm, and the DCIS had spread across my breast 8cm long. I did not have any cancer in my lymph nodes. I had neoadjuvant chemotherapy for 5 months, (16 rounds) then had a double mastectomy with reconstruction. My pathology margins came back clear so they did not recommend radiation.
In December I started hormone therapy (estrogen blocking). I do monthly injections of Lupron to stop my ovaries from producing estrogen and I take daily meds (exemestane). I was previously on Zoladex and anastrozole, but changed over to Lupron and Exemestane due to side effects. My oncologist wants me to stay on this plan for 5 years. She has strongly suggested against having my ovaries removed, due to the long term side effects from doing that at my age. (Heart issues, osteoporosis, bone loss, and early dementia).
I already have two children and do not want anymore so that part doesn’t have any factors in my decision making.
I should mention I am very healthy, besides having breast cancer. My BMI is 19, I am active, and I don’t have any other health concerns and am not on any medications.
I am now 37, in induced menopause, and I am struggling with the side effects. I have intense joint pain, stiffness in my bones, I can barely get out of bed most mornings. I have awful hot flashes, brain fog, and experiencing vaginal dryness and pain after and during intercourse.
I am currently doing everything I can nutrition wise, and I have acupuncture every 3 weeks to help with side effects. I sit in an infrared sauna every night before bed. These things only help take the edge off, but I am still having a very hard time.
I am trying to find more research on choosing to decline the hormone therapy, or even choosing to do less than the recommended 5 years. I will be 42 by then time the 5 years is complete. At 42 I would not be in natural menopause yet, so I do not understand why it would be safe at that point to allow my body to make estrogen again, but why it isn’t safe to do so now.
My oncologist told me it is because the clinical trials show results after 5 years. I cannot seem to get an answer that makes sense to me though.
My risk for recurrence is low when I use the online calculator. I want to find a risk calculator if I choose to stop the hormone therapy.
I am looking for anyone who has stopped early and their experience.
I struggle with this huge decision as I would feel guilty if I stopped and had a recurrence, but my quality of life right now is awful. Then I think about the women who stay on the treatment and get a reoccurrence regardless. Obviously it is a huge decision and there isn’t a magic ball that can tell you what your fate will be. I am just looking for anyone who might have made this decision and any resources that helped them make it.
Thank you to all my pink sisters who take the time to reply to this. 💗 If you are not comfortable posting online, please reach out to me via email.