Parent recently diagnosed, looking for support

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Hi everyone,

My parent has recently been diagnosed with FNHL, I believe stage 3 as it is both below and above the diaphragm. They are due to have a PET scan over the next few weeks, I think this will give us a clearer picture.

I know everyone's journey can look so different, but I wondered if anyone has experience with or gotten through something similar? I'm quite lost and confused and don't know what the future is looking like. Looking for any guidance, support, or words of wisdom right now. Many thanks.

  • Hi   and a warm welcome to this corner of the Community although I am sorry to see you joining the group and to hear about your parents diagnosis.

    I am Mike and I help out around our various Lymphoma groups. I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable 'other' type of Low-grade non-Hodgkin 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.

    Let's look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

    Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) with Follicular Lymphoma being one of the most common types of  Low-grade non-Hodgkin lymphoma and although it is classed as incurable there are lots of treatments available when required and put it to sleep for a period of time.

    As I said I was diagnosed over 24+ years ago with my type of Low-Grade NHL...... yes I have had various treatments over the years........ but I turned 68 last Nov and am living a great life.

    When it comes to Staging in Lymphoma it 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.

    With some types of slow growing Low-grade non-Hodgkin lymphomayou may be put on what is called Active Monitoring (I prefer the term Active Monitoring to Watch and Wait as it’s more accurate as to what is happening) and this even happens with a stage 3 or 4 staging......... I was on Active Monitoring for over 14 years before I had any full on treatments (but my type of low grade NHL was ‘on’ my skin so was treated as though I had Psoriasis).

    Getting clear information is important so these two links can help you get the best out of appointments.

    Top tips for getting the best from your appointments

    Questions to ask your medical team about Lymphoma

    Always around to help more, just to chat or answer questions as best as I can.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Mike, its great to meet you. I appreciate your kind words and insight into your journey.

  • No problem…… when cancer comes into the family the brain goes into overdrive…… but clear information about what Lymphoma is and how well it can be treated will help reduce the noise between the ears.

    Do get back to us at any time with any questions and do come back once there is a clear plan as someone will have walked the same path before.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge