Hi everyone,

I've just joined. I'm currently under watch and wait with oncology, for numerous enlarged lymph nodes throughout my body. I originally had ovarian cancer 4 years ago and had everything removed and was clear. A routine ct scan then picked up enlarged nodes throughout my body which were suspected to by a low grade lymphoma.

Ive since had 3 pet scans, and whilst there is areas of higher activity in some.lymph, on the whole they are stable. However I have a lymph node in my mesentry/stomach area that keeps growing albeit slowly. It grew 7mm last year so is now over 2cm. 

I should say at this point that I've had bone marrow biopsies, endoscopy to try and get a diagnosis but they come back inconclusive, although BMB came back stating a small area of suspicious cells could be seen but not enough for definite diagnosis. No specialist can guarantee removing the lymph node for biopsy as its so deep and would require open surgery. My bloods are always fine.

I've never suffered with my stomach, but now have severe episodes of crippling upper abdominal pain intermittently requiring opiate based meds to relieve. I now also have episodes of gnawing upper abdominal.pain intermittently at night keeping me awake.

The lymphoma team don't seem overly concerned but I've had this on my head for 3 years with no diagnosis. It's driving me up the pole. I've not been pet scanned since 2023 and the lymphoma team are going to order another to see where we are at. I suppose I'm trying to ask if anyone out there has had a similar experience? I know my symptoms must point to something that isn't right-im.going mad wondering if this node in my retroperitoneal area is connected to my pain...

Can the mesentry be hiding a mass that's causing pain? Could this actually be low grade lymphoma? Is there anyone out there with low grade lymphoma that took a long time to diagnose?

Sorry for the garbled rant,

Kate