So, have had bloods, x-ray, CT, PET and lung function test over Xmas and New year. Met with the Consultant and nurse (assume CNS and appeared in charge!) for the first time today and they showed the various scans. Look to be "hot* areas (to use the consultants words) to neck, chest and abdomen. Have now been referred on to haematology for a biopsy, suspected lymphoma. I suppose the fact there is a little more clarity is a good thing, but this is no fun. Two steps forward...
Hi ChrisYorks and warm welcome to this corner of the Community although I do see that you have been posting in other areas of the community including to our great Cancer Nurse Team.
I am Mike and I help out around our Lymphoma groups….. and 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 NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different from your suspected type I most definitely appreciate the challenges of this journey rather well.
Although Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) at times the Diagnosis of Lymphoma can be notoriously difficult.
Back in 1999 when I was going through the diagnostic process for my first T-Cell NHL….. my consultant was 99% sure as to what type I had but it took a full year, 6 biopsies and a few scans to get the truth.
There are over 60 types and sub-types of Lymphoma so this makes it even more complicated…., but now you are going to see a Haematologist so progress will be made….. but you will have to expect that this is still going to take time….. most likely weeks even as much as 6 but let’s look for answers soon.
When it comes to Lymphomas a scan can light up like a Christmas Tree as this shows where the Lymphoma is presenting but in Lymphoma this is not that unusual as it is a blood cancer/cancer of the a Lymphatic system so where the blood goes so can the cancer cells….. but unlike most other cancers where wide spread cancer is a poor prognosis….. it’s not with Lymphoma….
In late 2013 my skin was 70% covered with tumours (I have a skin NHL) my bone marrow was full of Lymphoma cells and I had a growth the size of a brick in my neck making me stage 4a..,,,, but here I am, turned 69 last Nov and living a great life.
There is no one treatment fits all for Lymphoma ….. although the main treatments are Chemotherapy, Radiotherapy, Targeted Therapy, Stem Cell Transplant and CAR-T…… I have had them all apart from CAR-T.
I would suggest that until you have a clear diagnosis you best stay on this discussion rather then jump around our various Lymphoma groups……. the other crazy thing I will highlight is you need to be prepared for being put on Active Monitoring (Watch and Wait) …. It took 14 years before I needed full on treatment…. at times I was in a lot of pain!!!!
Some of the slow growing Low-Grade NHLs are often not treated until a point is reached where treatment would be most effective - yes crazy (See my story)
We can’t have a group for all 60 type but these are our main Lymphoma groups below….
General Non Hodgkin's Lymphoma
These groups will be safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
The most important thing at the moment is getting clear information so these two link will help you navigate the very complicated world of Lymphoma diagnosis and talking with you Heamatology team
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
Always around to answer questions or just to chat.
