Hi all, 
. I've been suspected low grade nhl since January 2023. I've been on watch and wait but no formal diagnosis, because the enlarged lymph node were in retroperitoneal and mesentry. All been static for 3 years, but recently I've been having stomach and back.pain of a night and found an enlarged lymph node in my neck. Subsequent pet scan found multi nodal 4cm masses in abdomen, new retro oesophageal nodes and supraclavical left node in neck with high suv activity in spleen. The suv scores in stomach, neck and behind oesophagus are high and I've had a biopsy on my neck node. Im enduring the 4 week wait and its wrecking me. I've been on high alert since March 2022 after having scc ovarian cancer and was fully cleared with surgery. Anyone else doing this wait?
Kate
Hi Katie1978 and a warm welcome to this little corner of the Community although I am sorry to hear that you find yourself on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
For some context…… I have been on my Lymphoma journey for over 25 years first diagnosed way back in May 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (CTCL).
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive Peripheral T-Cell Non Hodgkin’s Lymphoma (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ may be different I most definitely appreciate the challenges of this journey rather well.
I can totally appreciate the challenges of waiting for biopsy results….. but stressing about them is not going to change what you are told….. it is what it is.
Way back in 1999 into 2000 it took a full year and 6 biopsies for pathology to confirm my first type of NHL….. even although my consultant was 99% sure as to the type I had.
When my second type appeared it took over 6 weeks to get a clear diagnosis……. although the waiting is hard it is a very important stepping stone in the direction of getting a clear diagnosis and treatment plan.
Diagnosis is further complicated due to there being over 60 types and sub-types of Lymphoma……
The main thing I can say at this point in time is when it comes to Lymphoma.. ….. although it’s the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) ……… it is very very treatable.
When I was first diagnosed with my first NHL our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various skin treatments over these first 14 years (it was a skin NHL)
Then in late 2013 when my second NHL appeared I had some intensive treatment between Sep 2013 to Oct 2015 (chemo, radiotherapy and 2 Allograft (donor) Stem Cell Transplants)……. but we have went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 years since my last treatment.
I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
Always around to chat.
Hi Katie…. I totally understand your frustration but unfortunately when it comes to Lymphomas your story is actually not that unusual.
Lymphoma….. especially some of the low-grade NHLs can hide rather well.
Lets look for clear answers soon ((hugs))
Hi again Rainbow54 it’s a while since you have posted……. how are things going?
