Desperately need insight

[mynameagain]

Going on 8 months now and still no answers. It started with painless swelling of the lymph nodes in my neck, then the nausea and started getting lightheaded and unusually sore after working out. Started losing alot of weight and losing my appetite, then i noticed the lumps (lymph nodes in my groin). Time went on and i now have regular night sweats, still cant gain but have been having terrible diaphragm pain after eating, more lumps in my neck, on my collarbone, in my armpits and can see and feel my lymph nodes in my abdomen. I've had every test under the sun, ct, mri, bloodwork, ultrasound, more bloodwork, and a pet and biopsy. Pet came back good, only thing that lit up was the thymus. Took 2 lymph nodes out of my groin which were 3cm and 2.5cm and they came back benign? Doctors cant make sense of it. Only thing showing in labs is anemia, no autoimmune disorders are being found. Doctor wants me to do axillary, clavicular and cervical lymph node biopsy next week. Is it possible this is still lymphoma? We have done so much back and forth im exhausted. I'm having a hard time finding energy lately and eating just makes it worse. I'm 2 pounds from being underweight and I just desperately want to feel better. How likely is it that I still have cancer with a negative pet? Anyone else have any similar situations? I've also had irregular vaginal bleeding for the last month with severe kidney pain in the left kidney. Over time I've had vertigo issues and had a seizure about a month ago. I need answers soon I'm getting so weak and tired. Any insight is appreciated. Thank you so much!

[lankisterguy]

Hi mynameagain,

I would like to help- I have limited knowledge of the Canadian Healthcare system (I'm in USA), but it sounds like you have typical lymphoma symptoms.

I assume that the tests performed so far include a "Flow Cytometry" test done either on your blood and/or the lymph nodes removed. This would normally sort out which type of lymphoma, but some people get really strange results and it then takes an expert doctor probably a Hematologist/Oncologist in a major research center to sort out the fine details

Here is a general explanation of the typical tests done to diagnose lymphomas:

lls.org/managing-your-cance...

and a detail of the flow cytometry test

See: mayomedicallaboratories.com...

I have CLL and participate in several online groups- we always suggest that patients get a 2nd opinion from a top expert that is specifically focused on lymphoma at a major hospital.

If you need help identifying an expert in your area of Canada- you may be able to get help from the Admins on this site or send a message to my friend Chris at Cllcanada- healthunlocked.com/user/cll...

Len