Fortunately, I am a doctor. I have an agressive cell type of Diffuse Large B cell Lymphoma. But it is hard to advocate for yourself when you are really sick. Many of my burning questions are answered by going to the literature in PUBMED. It is the National Library of Congress and has articles from about 40,000 juried medical journals on planet Earth. I am still too sick to analyze the statistics in the articles, but even if you read parts: Abstract, Introduction and discussion/conclusion, you can get valuable information. For instance getting routine labs is 1% predictive of cancer returning. That is pretty close to 0. So you don't have to go up and down about that one. PET scans?? The miss lesion less that 8 mm and are 30% predictive. Also nothing to go up and down over.
My doctor refused to tell me what my 5 year survival was. The stats on that aren't great as all DLBCLs are lumped together and not segrated by. cell type. So 50% is probably more than I will get. Who knows?
My first oncologist told me I had such a good response to chemo, that I would not need radiation. My second oncologist disagred, but told be proton beam radiation had no proof that it worked. I opted for proton beam radiation anyway. She does not understand the literature on it. I was spared radiation burns doe to this targeted therapy. It is much safer and currently is only covered by real Medicare. Do not believe the private insurers like Medicare Advantage. The only Advantage is that it is cheap, because it makes money for the vultures that own. the programs.
I try to celebrate life every day.

I had one at MD ANDERSON and he truly played my anxiety. I changed oncologists after that.

Bless u Carla and ur n my prayers. I know what u mean by being to tired, emotionally drained and mentally exhausted to advocate for urself. I’m tired of begging medical professionals to do there job when it’s what they are paid to do and they have no compassion anymore I feel.

Speaking of pet scans, I had one last summer when they thought my nodes were carotid body tumors. Neurologist said wasnt carotid body tumor but the nodes had grown since previous mri few months prior n bulk size or short axis of 2.1 cm by that time. Neurologist also stated he saw lots of muscle and soft tissue activity in area of nodes in neck. Following pet scan had another mri orbit and showed had doubled n size and ordered biopsy. Pathologist noted on report couldn’t give accurate diagnosis bc of scant lymphoid tissue and recommended excisional biopsy but head and neck surgeon refuses to do it. Said the cytology biopsy I had is accurate enough. Yet just had lab work done and my AA/EPA is 27.3, LDH was elevated but blood smear and SED was normal.

I feel like that every time I see my oncologist!

Absolutely SOME but not my oncologist she is awsome!! But some are just in it for the money VERY SAD cuz it's hurts us the ones that need u the most.