Diagnosed this morning, looking for info and advice

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Hi all!

I'm a 43 years old, married to a beautiful French girl, and we have a 6 month old boy. Life was going great until about a month ago, I found a lump in my neck, left it for a week or so and then made an appointment with my GP. She put me on a 2 week fast track cancer check, and after a CT, MRI and biopsy, this morning I found out it's Follicular Lymphoma. Next step is more scans to see how advanced it is, and I have an appointment with a consultant in 3 weeks to figure out the treatment plan, if any, for now.

I guess I'd just like to hear about anyone else's experience, maybe of a similar age to me. 

When we first heard the news this morning it was delivered quite matter of factly and my wife and I both thought the worst and that it was a death sentence. After doing some research today it sounds more like a chronic manageable disease and something to just come to terms with, but I dont need to start planning my funeral just yet!

Anyway Im just an anxious guy, suffering from depression my whole life, so this doesnt help - but my wife is super supportive and the NHS has been great so far, so I'm feeling optimistic, would just like to speak to others in similar situations, or who have gone through this already and come out the other side.

Thanks!

Ian

  • Hi Ian  and a warm welcome to this little corner of the Community but sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

    I see that you have commented on a few posts so I am sure you have had a good look through the comments and information.

    There are certainly more conditions far worse than being diagnosed with Follicular Lymphoma although this is not great…… but it is very treatable when required……. most types of slow growing Low-grade non-Hodgkin lymphoma are seen as chronic life long health conditions…… think type 2 diabetes but you are not on treatment all your life.

    For some context I was diagnosed way back in 1999 at 43 with a very 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 very very rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified 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 but as an encouragement I am coming up to 9 years since my last treatment and I am living a great life.

    Clear I formation is important so you may find this link helpful as you get ready for your next appointment Questions to ask your medical team about Lymphoma

    My story is rather complicated See my story as I had to go onto have significant treatments mainly due to developing the second more aggressive type of T-Cell NHL in late 2013……….. but I turn 69 in Nov and I doing great.

    Any questions just ask them.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you Mike! I'll definitely have more questions for you, but I appreciate the kind words of support!

  • Hi Ian

    Pretty similar story to you. I discovered a lump in my groin when I was 53. I was having severe abdomen pains so went to the GP. Several weeks of testing later and I'm told I have FL on my 54th birthday. Queue loads of crying with my family assuming it's a death sentence. Initial response from GPs effectively supported this and it wasn't until much later I found out that there was hope.

    I've just finished 6 cycles of chemo and immunotherapy.  Now moving into 2 years of maintenance immunotherapy but the chemo has been brilliant. I'm now in remission and the chemo is very targeted these days so side effects were minimal.

    I'm so grateful that medical science has moved on so much as my dad died with a NHL so I assumed the worst when I was diagnosed. I'm much more hopeful now and can start to think about growing old with my wife and seeing grandkids bounding round my well tended garden causing mayhem!

    FL is serious, but doesn't have to define you.

    Regards,  Cormac 

  • Hey Cormac, thanks for this very kind letter! Im feeling better than I was a week ago, I understand a lot more about this condition and I'm less featful of it. I have some more tests and consultations coming up soon, so I will find out the treatment plan. 

  • Hey Ian

    I'm about 12 months ahead of you on this journey so shout out if you need to chat. Happy to walk through my experience and hopefully put your mind at rest when you see some of the scarier stuff being discussed. It's rarely as bad as you think Grin

    Regards,  Cormac 

  • Thanks Cormac, I'm just waiting on a PET scan next week and then my consultation with the doc on the 13th to find out the treatment etc. Thanks so much for your advice and support, I'll definitely be in touch Smile

    TBH I dont mind the tech and science stuff, I find it fascinating. Its just the wait to see what the treatment might be thats causing me stress.

    How are you doing these days?

  • Hey Ian

    The treatment will be based on a standard protocol. If they go down the immunotherapy route, then it's 12 infusions over 2 years which slows down the progress of the disease. That's handy if you are early stage (and by that I mean asymptomatic). My platelets were getting pretty low so I went onto full chemo and immunotherapy combined. Again, a standard protocol. I had bendamustine and Obinutuzumab. Just had my end of chemo PET scan and the chemo has been very effective. I'm still knackered but have been very fortunate with side effects. You feel rubbish for a few days after chemo but normally bounce back pretty well before the next one is due.

    Only complications my side are gout (uric acid builds up with cancer cells dying so although gout isn't fun, it was a great sign that the cancer was taking a hammering).I also could hear my heart beat in my ear which was distracting but not a major problem. I'm off work currently so can focus on looking after myself and I'm aware that infections are the big concern. I take sensible precautions to protect myself there but it doesn't stop me enjoying walks with the wife and our young golden retriever. 

    So basically, I'm highly thankful for the treatment and able to manage the side effects. I remain very positive Grin

    Regards,  Cormac