Hi, I was diagnosed with Hodgkin’s disease in 2004. After 6 months of abvd chemo and 3 months radiotherapy, I luckily made a full recovery and have been in remission for 19years.
Recently I had not been feeling well and eventually after a lot of pushing, got my consultant to agree to a PET Scan. Of course 3 days later, I got the dreaded news that the results showed enlarged lymph nodes in the neck and chest. I am currently waiting for a neck biopsy on the 17th December.
My question is, surely the PET scan can tell you if it is active cancer again?
I remember when I was first diagnosed in 2004, they told me it was cancer prior to the biopsy but this time I feel this consultant isn’t telling me or perhaps wants more information before confirming?
I just find the waiting game the hardest, I want to know what I’m facing to prepare myself, even though I feel like it probably is cancer again as I’m sure a PET scan can tell you that.
Hi fifitrixybelle and a warm welcome to this corner of the Community although I am sorry to hear about your concerns.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - NOS NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I relapsed multiply times over my first 15 years so appreciate your concerns…… a PET scan can light up areas of concern but a biopsy needs to be done to 100% confirm what this is….. I had to have a new biopsy done back in late 2013 after a brick sized mass grew in my neck…… and that is when we found out that I had developed a second, new type of Lymphoma.
I am 9 years out from my last treatment (See my story), I turned 69 in Nov and I am living a great life.
Unfortunately Relapse can happen, but unlike most other cancers a relapse in Lymphoma is still very treatable…..
You may find this link helpful…..
Questions to ask your medical team about Lymphoma
….. as there is a section about relapse.
