After several biopsies, I was diagnosed with Invasive Lobular BC , Hr+, HER2-in both breasts in August 2021. I had both breasts and sentinal nodes removed in late October 2021. Nodes and margins clear. OncoDX is 11. I started letrozole in December. I developed severe carpal tunnel and trigger fingers in both hands, severe body and bone pain, trouble sleeping, and depression. I stopped after 5 months. My Onco suggested a short break. A nurse from her office was supposed to follow up after a few weeks. No one called so I took the summer off and did a lot of research. I decided to try building my immune system and using a natural compound called DIM
to try to suppress estogen. Along with all the supplements I have taken for years, I added Turkey Tail Mushrooms and a combination of mushrooms called Mycommunity, both from Host Defense. I added Mercola fermented turmeric and annato tocotrienols (a form of Vit E). Anyway, I just had my 6 month check-in with my Onco a few days ago. It took a few extra months to schedule. We discussed starting AI's again. I expressed my concerns about bone loss (I have osteopenia), thinning arteries in the heart, (I've had a heart attack) and the other issues I experienced. She said my chance of recurrance increased because BC was found in both breasts. That meant two breast cancers. She also said that if I wasn't experiencing side effects with the AI's, it wasn't working. She told my partner and I that if I stopped taking the AI's that she could only see me once a year for screening which is palpation of the chest area along the scar. (I did not go through reconstruction. One surgery was enough for me. I am 69 going on 70 this year.) She doesn't do any other screening. I will have to rely on my PCP for a 6 month intererval of palpation. I feel like I was" left out to dry" by my Dr. and my hopeful feelings dashed. It has been a week and I am trying to regain my sense of hope and resolve that I/We can choose what feels right for myself, my family and my quality of life. I am going to seek out a practitioner who will test my hormone levels. I do have a base line from a test my Naturopath did several years ago.

I am so disappointed in our traditional health care, and particularly healthcare for women. I can only guess that I am a lower risk patient than My Dr."s other patients. I will take that as a good thing. This is really my first experience with traditional medicine. I waded through it with my mother, and did not enjoy it. Good luck and blessings, as you move forward on this crazy journey.

Jump to this post