Hi everyone, New here. Recently been diagnosed with non hodgkins follicular lymphoma. Stage 2 and symptomatic. Had numerous tests/scans. Recent Pet Scan on Wednesday. Bit overwhelmed with it all. Don't think I've really processed it at all fully.
Hi Julie59 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 44 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’ is different I most definitely appreciate the challenges of this journey rather well.
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) with someone being diagnosed with one of the 60 types and sub-types of Lymphoma every 26mins.
…… with Follicular Lymphoma being the most common type of slow growing Low-grade non-Hodgkin lymphoma.
One very important things you need to understand about Lymphoma in general is that Staging in Lymphoma is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not.
I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
In way of some encouragement…… when I was diagnosed at 44 our daughters were 14 and 18…… I continued to work for the first 12 years in a demanding further education teaching job.
I did have various skin treatments over the first 14 years as I had a skin Lymphoma but it took the 14 years before I reached the point where full on treatments were required (See my story)
But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and I am now 9 years 9 months out from my last treatment and 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, help out and answer questions.
