MichelleLynn,

They kept telling me 3A and 3B - I thought that was staging - NOPE, that was the grade. It was 3 months later that the Dr told me that I needed to get a bone marrow biopsy and another CT. I dragged my feet because I was still feeling pretty awful - they had not figured out that I had pancreatic insufficiency yet. The oncologist was not pleased that I did not immediately agree to the biopsy. Mind you, I don't agree to much of anything until I have thought about and researched it. He maintained that my continuing GI issues and feeling so terrible had nothing to do with the Lymphoma (being caused by the obstruction and Whipple surgery to remove it - don't count) so he told me to talk to my GI Dr. I had liver #s that were 2-4 X what they should be for months after the surgery - again - not his problem - see the GI. Can you tell I am still prickly about this? He is no longer my onco but he maintains that my expectations were unrealistic and that I expected him to manage my total care. No - but it would have been nice if he would have documented my complaints (he really did not) and/or even bothered to share that information with the other Drs. He mentioned pancreatic insufficiency at our first meeting - but immediately dismissed it when I asked about cost and he found out that I did not have insurance at that time. He could have ordered the test or documented that - but he didn't. Months later he offered to refer me to a GI but by then I had already seen a new GI PA a couple of times. It is really, really a sad state of affairs when Drs choose not to talk to each other or look at the big picture but I have found that is the norm in my world. About 10 months after surgery my liver #'s went back to normal - but no one can tell me how or why. My research taught me that NHFL frequently comes back in the liver but whatever. My liver has some "minor" abnormalities - that no one talks about. No mention has ever been made about my spleen. I read all the reports - nothing is mentioned. However, I know that sometimes - things aren't documented. Depends on who does the report etc. You find out later - that something has been there all along (and is stable or whatever). ARGH!

I am not sure... none of the Drs had any interest in the past.
My best guess is that it started maybe 5-9 years ago. I had vague symptoms - fatigue, general not feeling great, night sweats, sleep disturbance, mood swings, and some other things (itching that came and went) and GI issues. Nursing school, became PCG for Dad, family issues, my significant other moved on... there was alot going on. I had a job that changed insurance every year (and so I had to change PCPs each year). I went to them all - They put me on anti depression meds, told me it was stress, thyroid pills and easily blamed the rest on menopause. There were some high stress years so I really thought I was just nuts - because they kept telling me there was nothing wrong.

Things started to get worse about the time that COVID started in the US - so again I thought it was just stress and aging. SOB, more fatigue and the GI issues turned very ugly. Even then I waited months and months before I went back to the PCP. It was the crazy intense itching that pushed me over the edge. In the week it took me to get into see her - I turned yellow. The good Lord was looking out for me. You can't ignore/blow off someone that basically glows in the dark...LOL. I never had the typical swollen lymph nodes in the normal places. Atypical is the word that I have heard throughout this crazy journey.

From the time I noticed enlarged lymph nodes until diagnosis was about 5-6 months, but since follicular lymphoma is slow growing, my oncologist said I might have had it for years before anyone would notice a symptom.

Hi! Sorry for what you have been through. Such a sad state when Drs just don't seem to care anymore. My Dr would not listen to me until I was so sick I demanded help. I wonder why they act like having it in liver don't happen, I had it in mine now they say I have fatty liver disease, I think it's damage from lymphoma. I also had a spot in my breast they kept checking and surprisingly it went away after treatments. They were like something in your breast but it's nothing keep coming back every 6 months. I truly don't think they know everything about lymphoma. I also have it in my mesentery do you have it? Now I read that is really rare. I know we are fighters to go through this and keep fighting.

A year already.