I am sorry to hear about your diagnosis of follicular lymphoma. It is understandably a very difficult and overwhelming time for you.
Can I check if your oncologist knows about the alternative treatments you are currently taking? If not, it is really important that this is discussed with them. I have enclosed a link to our information on alternative therapy here Complementary and Alternative Therapy
Some people can be offered watch and wait treatment for Follicular lymphoma but this will be for people who have early stage lymphoma or do not have any symptoms. There are different treatment options available and these will be recommended by your haematologist if treatment is needed. These treatments are evidence based and proven to be an effective ways of treating lymphoma.
Treatment will depend on your age, symptoms and where the lymphoma is within the body. I have enclosed some information on the treatment for follicular lymphoma which you might find helpful Treatment for follicular lymphoma
Whilst we cannot provide medical advice here on the forum , we can offer you information and support. I would encourage you to reach out to your haematology team again and maybe speak to your Clinical Nurse specialist if you have one to discuss your concerns.
We would be very happy to talk this through with you, if you would find this helpful on our free and confidential nursing support line. The number is 0808 2080 888.
Hi, thank you so much for sharing your story — I know how overwhelming it can be to have a diagnosis like follicular lymphoma, especially when you’re faced with differing opinions on treatment.
I just wanted to say that treatment decisions for follicular lymphoma really do depend on a number of factors, including the stage, size, location of the disease, symptoms, and how it’s affecting your body. The “watch and wait” (or active monitoring as its now known ) approach is a well-established and valid option for many people with lymphoma.
That said, not everyone is suitable for watch and wait. I was initially told that would be my course too, but during the months of my diagnosis and subsequent tests and various scans it was revealed that my disease was actually quite bulky and active, so treatment was necessary. That was back in 2018, and I’m very well now and currently in active monitoring.
It’s completely understandable to feel uncertain, especially when your oncologist is recommending treatment based on the seriousness of your scan. It might be helpful to ask your medical team to explain why they feel treatment is needed now - this might help your understanding more?
And as Fiona as said I’d also gently encourage you to discuss any alternative treatments you’re considering with your medical team. It’s important they have the full picture to support you safely. I know there were some supplements that I was advised to stop.
You’re not alone in this — many of us have been through similar crossroads. Please keep reaching out and asking questions. We’re here for you.