Non hodgkin’s follicular lymphoma

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.

Hi Julie, 

I was diagnosed last year with Non Hodgkins follicular Lymphoma stage 2. At the time I found it overwhelming too as it is so different from Breast Cancer (which I had in 2022).  The stages and treatments can be so different.
I was put on a 'watch and wait', meaning I was to be closely checked and hopefully nothing progresses and I never would need treatment. 

This was the hardest part to get around, as how can I have cancer and they do nothing.  But unfortunately it cannot be removed and if you are not having any issues then having no treatment is the best option.  It is key to just life your live as normal as your can, but take note of any changes and let the doctors know at your appointments. 

Sometimes, you can go through the rollercoaster of emotions near your appointments, what if it has spread what if it has moved on and causing more issues.  But after the appointment and told all is okay and see you at the next appointment is a great feeling. 

Read all the details they give you and dont be afraid to ask lots of questions.  I was always told that there is no silly question. 

Reach out for a chat if you want.

Louise

Hi , thank you for sharing. I had lung cancer stage 2b at that time I had a APET SCAN and it lit up, they did a bone biopsy and found stage 4 FL. I went through chemotherapy and now immunotherapy. My last CAT SCAN showed that it was also treating my FL. I’m happy about w. I was and still am asymptomatic with my fl

Welcome to the group Baby girl 2.0 lymphoma is often found by accident often during the diagnosis and/or treatment for other health conditions.