What to expect from treatment and ways to cope with side effects.
Posted on: Sep 8, 2021 09:26AM
I had my mastectomy in June. I'll finally be seeing the Oncologist for the first time on Monday. I already know that the minimum further treatment I need is radiation to the chest wall, radiation to the lymph nodes, and 5-10 years of a drug like Tamoxifen. Last month they did a CT scan and a bone scan and sent a sample of my tumours to a lab in America which will apparently help determine likelihood of recurrence. So discussion about chemo is a possibility.
For context, I have a debilitating chronic illness that gives me immense fatigue. So I am particularly wary of therapies that will add more fatigue. And I know that my current illness won't allow me to travel and attend daily hospital appointments (even without treatment side effects) - I'll be bed bound for at least a week after just 2 or 3 trips. If I push through that, then worsening disability will become permanent. So there are some complicated logistics to be discussed.
What questions should I prepare ahead of my Oncologist appointment? I know to tell her about my co-morbid conditions. And to ask what were the results of the three tests/scans. But after I left my post-surgical result appointment last month realising that I hadn't been told what stage my cancer was at, whether the grade had been revised or even if they got it all out with clear margins, I can't take it for granted that I will be told everything I need to know unless I ask directly. So I would like to be prepared. My memory isn't great.
What are the basics that I need to ask?
What questions do you wish you had asked in the beginning, once your radiation was underway or completed?