Hello - I’ve just been given an “incidental diagnosis” of follicular lymphoma with a mixture of grade 2 and 3a disease. They say it’s low grade.
I have my first appointment with my haematologist tomorrow and hoping for some words of comfort or advice from this group this evening. I don’t feel any different, no symptoms (that I know of, but am second guessing every feeling, ache and lump!). I’m shocked and frightened and looking for some advice or thoughts from anyone who has been through this. I got the results 3 days ago and have been going spare… my husband has been incredibly supportive but we have two little children and I’m so frightened about what this diagnosis means. Thanks
Hi Worriedmama2025 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.
Follicular Lymphoma is indeed one of the most common types of slow growing Low-grade non-Hodgkin lymphoma and with this comes lots of treatment options as and when required.
The link below highlights the important questions you need to ask your consultant at various times in your journey.
Questions to ask your medical team about lymphoma
An incidental diagnosis of a low-grade NHL is not that unusual….. as this is slow growing you could have been living with it for some time.
As you are feeling ok you may well be put on what is called…… active monitoring…this often happens when your condition has not progressed to a point where treatment is most effective…… I have talked with people with FL who have went years without treatment……
Although I have a different Low-grade it took 14 years before I needed full on treatments.
Let’s see what your appointment says.
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) but unlike many cancers there are lots of treatments available…… and these treatment are very effective.
In way of some encouragement…… our daughters were 14 and 18 when I was first diagnosed back when In 1999. I continued to work for 12 years in a very demanding teaching job before I needed full on treatments……. 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 I am now 9 years 8 month out from my last treatment since my last treatment and living a great life.
Any questions just ask.
You need to be guided by your team as they know the best way forward with regards to how your FL is presenting.
As I said treatments are often held back until they would be most effective….. there are a number of treatment routes but they have to be carefully used…… treating early will use up one of your options….. when it may not have been needed…… remember you most likely have been living with your FL for some time and you did not know.
Your FL just like my first type of Lymphoma are seen as life long conditions…… treatable but not curable.
Don’t jump to far ahead…… look through the questions link, get a note book and write the top questions you want to ask in the note book…… and remember to keep notes as to what you are told….. will you have someone with you?….. two pairs of ears takes in more.
