Hi there
My uncle has recently received his diagnosis of FL3A, however, we've been advised it is an aggressive variant.
I'm a little confused and am struggling to find accurate information on this type of FL as everything says 3A is slow growing but we've been told this one is not which would surely indicate it to be 3B?
The Lymphoma is symptomatic with both legs severely swollen as well as genital area swollen up like a grapefruit. Pain ranges from bearable to excruciating. Severe weight loss and waiting first round of Chemotherapy but seems to be taking time and worried that delays will enable the cancer to further progress.
We have not been advised of prognosis, just advised it is treatable.
Any guidance, thoughts etc would be most gratefully received. TIA x
Hi Sycamore Ann and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your uncle.
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 43 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.
Based on the information in the above link taken from the Lymphoma Action website (Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment)
Grades 1 to 2 and 3A follicular lymphoma are all slow-growing and are treated in the same way. The grade does not affect the likely outcome of treatment.
Grade 3B follicular lymphoma is usually fast-growing. Under a microscope, it looks like a type of high-grade non-Hodgkin lymphoma called diffuse large B-cell lymphoma (DLBCL). It is treated the same way as DLBCL.
So he/you or his caregivers need to get in contact with his clinical team to clarify this….. over my 25 years I have had mixed messages at times.
As for Staging in Lymphoma it is rather different from sold 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.
Always around to help or chat.
It’s a pleasure to help out. As for me I am 9.5 years out from my last treatment, I turn 70 at the end of this year and we are off to Malta in a few weeks….. regardless how challenging the Lymphoma journey is most folks find light at the end of the tunnel (See my story)
I never actually did see the same Haematologist all the time so in the early days (late 2013 onwards as I was with Dermatology between 1999 and late 2013) we were getting mixed information so we quickly developed the process of having questions in a note book and my wife ensuring that we asked the questions and she was the note keeper.
You may find these two Lymphoma Action Top Tips helpful….
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
….. at times we had to hold up a hand and ask for what they had said to be put in a way that the layman can understand…… but our CNS (Cancer Nurse Specialist) was excellent and she would often sit with us after an appointment to see if had ‘got’ everything and to answer questions.
Consultant know exactly what they are saying….. but at times their understanding and explanation does not hit the spot with the people in the opposite chairs.
