I am so sorry to hear your diagnosis. Waiting to learn a specific plan was probably the hardest part for me. It took my care team about eight weeks from my diagnosis to the time I got my plan. That time was horrible; I couldn't sleep, I did research on every aspect that could be applicable, and I was so scared. I had two MRIs, CT scan, tumor biopsy, lymph node biopsy, waited for my oncotype test, other tests, and multiple tumor boards. I did not realize that so many tests were needed and so many things taken into consideration. It is a process.
My oncotype testing was very helpful. It showed that chemo would only be 3% beneficial and my oncologist agreed that with everything involved in chemo, that this was not worth the benefit. I had a large tumor in my right breast that had spread to at least three lymph nodes. IDC HR+ HER2 - stage 3C. I took anastrozole for six months in the hopes of shrinking the tumor/lymph nodes in order to make it more manageable. It seemed like just more waiting when I wanted action, but it did shrink everything by 1/3. I had a partial mastectomy and lymph node dissection in May and had radiation M-F in June and July (38 regular and 5 boosts). Because of my lymph node involvement and high KEY 67 score, I started taking Venzenio with my anastrozole in August. In have monthly blood tests and checks my my oncologist. It has been a journey and one that I will be on forever. I will never be able to control my cancer, but I finally feel I have some control of my future.
I wanted to have plastic surgery for reconstruction during my tumor surgery. With the radiation needed because of the lymph nodes, I was told that was not ideal. Radiation changes tissue and skin cells and the chances that both breasts would be symmetrical after radiation to only one would be a problem. So I did not do reconstruction during the surgery. I have had two reconstruction surgeries since and am happy with the results.
I guess what I want you to know is that I understand your need for some answers. I was the same way. I did not ever connect to anyone that had the same journey I had, so even though I got a lot of good advice from this group, NO ONE can tell you what your plan will be. So much depends on testing results, your oncotype results, your care team, and decisions you will need to make. I also planned on a double mastectomy with reconstruction just so I wouldn't have to worry in the future, but my surgeon convinced me that this was not necessary. Everything I thought I would do initially changed after I was actually on my journey. Going through the process is actually easier that worrying initially what might be and what you might do. I'm praying that you get your plan soon and can start the process. The initial waiting to get a plan was probably the hardest part of this for me. Good luck and praying for good results.
Thank you so much for sharing your journey. I really appreciate it.