My name is Gord. I have recently been diagnosed with 3b follicular lymphoma. I had a biopsy done on a lump in my neck which was removed. I have had multiple tests completed. PET scan was negative. Waiting now on a bone marrow test as well as I had another cat scan done. Waiting on results for this too. The doctor has already signed me up next week to start chemo. Just here looking to chat as I go through this. Thanks
Hi Gord Gordo1464 and a warm welcome to this corner of the Community (and from Scotland) although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, other type of incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Like my type of Low-grade non-Hodgkin lymphoma your Follicular Lymphoma is seen as a slow growing life long condition....... that sounds very scary but when required there are many levels of treatment and I talk with people in their 80/90s who have lived with FL over half their lives and are still enjoying life.
Obviously there are going to be differences between the health system in Canada and in the UK but the questions you need answers for are still the same so this link Questions to ask your medical team about Lymphoma will help you get those questions down in a note-book.
You may be told your Staging...... if we were talking about other solid tumour cancers like Breast, Lung, Kidney..... a high stage number would suggest a poor prognosis........ in Lymphoma this is not the case as Staging is manly used to identify where your Lymphoma is presenting, the type of treatment and for how long...... remember I was stage 4 in late 2013 and I am still here living a great life.
Important tip - you need to take someone who is level headed with you to the first appointment as most of the information will go over your head.... and you don't want to be going home saying "I wish I had asked?"
Enough from me..... but you can see my journey through the link below but my journey will be rather different from the journey you will embark on.
I am always around to help more or just to chat
Sorry to hear about your brother and I can understand your concerns.
Living with a low grade NHL like FL is a mindset and especially you having your brothers experiences but once you have a good understanding of the condition the noise between your ears will calm down.
You can look through all the other posts and as always you can hit reply to any members discussion threads.
