Some meetings I go to I feel better & some confused. Stage 4 inoperable really shocked me since I had been praised for early detection and told I was probably a stage one. My husband & I found out on a "zoom" meeting with the oncologist that I was stage 4 when I asked about my prognosis! We were speechless! Fortunately, my PCP locally had suggested I see an oncologist locally weeks before & that appointment was in 2 days. My local oncologist was very positive and frank in what was going to happen. Within 3 weeks I had my port and started chemo! My CA 19-9 was around 450 then & slowly it came down over the next months. My CT scans showed some improvement & after 44 treatments with gemcitabine & Abraxane, I am now taking a "break". I will find out how that is going after the 25th/28th when my CT, labs & oncology appointment occur. This is now a stressful time. Scary to be without chemo, but my body was telling me I had to take a break.
When my local oncologist told me in the first visit that I would be in "palliative" care, I was really down since I saw "palliative" care in the light of hospice and not as ongoing cancer care. After searching that definition, I was much relieved.
Sometimes you need to fight with providers or teach them about things you discover. I had such edema from being on pregabalin that I finally took myself off of it! Breasts still have edema, but my feet & legs are 100% better! I won my fight with the VA over acupuncture but the VA made me give up my Tai Chi, so now I get 1 tx every 3 weeks. Since it has been helping I will pay for tx too!
Prayers to you, also. If you need to talk, message me also 🙂