Husband newly Diagnosed

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Hi My name is Susan I'm the wife off Bill,who has just been diagnosed with cancer .I'm really annoyed as we have been calling the GP since 2019,just before the Pandemic Started for a swelling around my husband's forehead,and it has taken for him to go and sit in A&E for 13 hrs to get to where we are today for a diagnosis. We are awaiting a body scan on Tuesday  to see if this is affecting anywhere else he's had bloods taken by a Heamatology Consultant this week He has stage 3A Follicular Lyphoma ,he still holds down a job at 74 head a Project Manager .He's worried about the treatment as they have mentioned radiotherapy and chemotherapy. Anyone who can advise us would be grateful. 

  • Hi Susan and Bill (and a warm welcome to this corner of the Community although always sorry to see folks joining us. I am Mike () and I help out around our various Lymphoma groups.

    I don’t have Follicular Lymphoma (FL) but was diagnosed in 1999 with a rare, incurable but treatable Low Grade NHL Stage 4a (CTCL) so although my Lymphoma ‘type’ is different I understand this journey rather well.

    Bill's journey to diagnosis is not that unusual as it often can take time and some perseverance to get answers and even then, for some like myself, it took a further 12 months to get a clear diagnosis even although my consultant was 99% sure as to what type I had - this is Lymphoma for you.

    The treatments used of Low Grade NHL's like FL are very effective, yes full on at times but all do-able. FL is one of the most common Low Grade Slow Growing types of NHL and this results in a long history of developments in treatments.

    His scan will be the final part of the jigsaw that will say 'if' he actually needs treatment straight away!!!!..... yes be prepared for them to say that it's not the best time to treat so could recommend Active Monitoring (Watch and Wait). The staging of Lymphoma is looked at rather differently compared to our types of cancer like Lung, Kidney, Breast...... where the higher the stage number the worse the prognosis....... in Lymphoma it's used as a guide to where the Lymphoma is presenting, what the best treatment is and for how long - I was stage 4a back in late 2013........ and I am still around living as good a life that any 66 yearly can live.

    The BOLD links above are taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Online Lymphoma Online Support Groups and indeed a very great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    When I was having my main chemo back in late 2013 into 2014 (hit my community name to see my story) there were a number of 70 year olds going through treatment at the same time as me and just a few weeks back I bumped into one of the men and he is doing very well and is hitting 80 soon..... so lots of hope.

    The group is always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Susan and Bill

    Sorry to hear your news - I am sure you are both worried. May I first say Mike is a fantastic person to take advice from as is  the Lymphoma Action website which can help you understand more about this disease.

    My final diagnosis was in October last year and is also FNHL stage 3a! The 3 means I have 3 lumps and 'a' means there are no symptoms ie weight loss or night sweats etc.

    On my initial diagnosis of Lymphoma I was told I would need chemo but as I have no symptoms and this is slow growing, I am on active monitoring or watch and wait and may not need chemo for a long time - if at all.

    I hope this helps a little - obviously your consultant is the person who knows most about your particular diagnosis and if treatments are necessary but hopefully it won't be needed for a while!

    One piece of advice Mike gave me is 'don't worry until you know there is something solid to worry about' Easier said than done but I have adhered to it where possible on my journey!

    Take care

    Pincushion

  • Hi good to hear from you and I do hope things are ok with you.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi thank you we are staying positive as you say it's no good worrying until we know what's happening.Bill has visable swelling to his forehead which it causing pressure to his eye 

  • Hi Highlander

    Thank you very much for asking - I am feeling really well! Hope you are too!

    Pincushion

  • Sue and Bill

    Glad to hear you are feeling positive. Hope the swelling can be sorted soon. Pray