Hi,
I’ve today finally been diagnosed with follicular lymphoma. The diagnosis has come following months of tests. My journey began in November when an MRI scan showed multiple lesions on my spine that were considered to be suspicious of malignancy. What followed has been a series of blood tests, followed by endoscopy , further MRI’s Ct scan, PET CT, 2 breast biopsy’s and finally a bone biopsy. I have lymph nodes in my femur, on my spine, left external iliac lymph nodes and left para aortic lesions. I wondered if anyone else is going through something similar and what to expect going forward. I’ve been referred to the haematology team so I will hopefully have some plan going forward.
I would really love to hear from anybody going through or having had a similar experience to give me a better understanding of what to expect . I am angry, and scared, but hopeful going forward
thank you 
Hi LettieT 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 (FL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable ‘other’ type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do 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) but many people have never heard of Lymphoma.
I don’t know how much you have read about FL (be carful where you read - my advice is stick to the Lymphoma Action website) but your FL is in the group of Lymphoma's called Low-grade non-Hodgkin lymphoma……. and like my CTCL these are seen as incurable but the positives are it’s very treatable, there are lots of treatments where required and folks 'live’ long and happy lives ‘with’ their Lymphoma……. You need to think that this is like other long term conditions like Diabetes….. although unlike Diabetes you are not talking medication all your life.
Your journey to diagnosis is not that unusual as Lymphoma is difficult to clearly diagnose…… it took me a full year and 6 biopsies to find out my type of lymphoma….. an interesting fact about Lymphoma - there are over 60 types and sub-types of Lymphoma so this is the reason that diagnosis can take time.
What your treatment plan will be will depends on what stage you are……. but and this is a big BUT…… Staging in Lymphoma is rather different and unlike most other 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.
I can’t even guess what your treatment pathway will be as it will depend on your stage and symptoms…… believe it or not many people are put on what is called Active Monitoring (Watch and Wait) as your Kymphoma is not at a point where the treatment would be most effective…… I was like this in my early days.
The most important thing you can do is get ready for your Heamatology appointment and make sure you have someone with you as your second pair of ears as info will come thick and fast.
These two link will help you get ready….
Top tips for getting the best from your appointments
Top tips for the day of your chemotherapy
The most important thing to remember is I was diagnosed when I was 44…… I continued to work in a demanding teaching job, I saw my 2 daughters graduate, go on to set up very successful businesses, get married and give us 4 beautiful granddaughters. I am now retired, I turned 68 last Nov and I am living a great life.
Have a look at the information in all the links and do get back to me with any specifics questions ((hugs))
Thank you so much for your response, this is encouraging and positive. I’m ready to take this on and being informed is the first step.
Good that you picked up my positive vibes….. my type of Non Hodgkins Lymphoma is a 7 in a million rare so it was a harder journey for me…..but FL is the most common type of slow growing Low Grade NHLs so lots of research and this results in lots of treatments.
Take some time to carefully read through the various links and if you need some clarification do get beck with your questions.
