Newly diagnosed

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Good morning,

I have just been diagnosed with Follicular Lymphoma. I have a small lump in my neck and feel fine but the news has been a shock. I don’t feel particularly scared, angry or worried but I might be naive. My immediate concern has been to tell relatives, especially my 20 years old daughter. Today I feel I have to tell my dad even though I know he won’t handle the news well. 
I feel torn between telling/ not telling.

What has been your experience? Do you feel release from letting people know? Or do you think you’ll have to mentally be strong for them (which I have had to do most of my life with my parents)? 
I think I feel some sort of guilt for landing this on them: does that make sense?

  • Hi again  and well done navigating across to this corner of the Community although I am always sorry to see folks joining us.

    As I said on your post in the New to Community I don’t have Follicular Lymphoma  but I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    Acceptance is one of the hurdles that you are going to have to dealing with. We regularly hear and read the phrase ‘1 in 2 people will develop some form of cancer during their lifetime’…… and unfortunately it’s become your uninvited squatter……. It is what it is, so it’s now all about understanding Low-grade non-Hodgkin lymphoma and more specifically your type Follicular Lymphoma (People tend to use the initials FL for short)

    FL is the most common type of Low-grade NHL…… it’s a slow growing Lymphoma, at the moment like my type of CTCL it is seen as incurable but ever so treatable…… born out in the fact I am 25+ years on from my first diagnosis and living as good a life as any 68 year old.

    Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) but lots of people have never heard of it…… it may be that when someone say they have Lymphoma most people just don’t do say Lymphoma Cancer….. like breast cancer, lung cancer…..

    When I as first diagnosed our daughters were 14 and 18…… we seen them graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. and we continue to look forward to what else is to come….. so be encouraged.

    Back in 1999 when I was told I had Lymphoma I asked my clinical team how do I tell my family? 

    Their reply was simple…… “Mike you don’t have a solid tumour cancer, blood cancers like Lymphoma are totally different, with low-grade NHL you have to see it as a life long chronic health condition….. say like type 2 diabetes….. but unlike diabetes you are not on medication all your life…… in fact I was basically on Active Monitoring (Watch and Wait)  for about 14 years before I needed big gun treatments.

    Telling my wife and 2 girls turned out to be far easier than I thought as the chronic health condition example was understandable…….. but until I had symptoms and/or treatment that made it obvious that there was something going on I did not tell my parents or my wife’s parents…… this was more to do with past family cancer experiences and the immediate reaction was going to be I was going to die soon……. in fact this is not the case with low-grade NHL…… far from it….. but their memories would say different.

    Be careful of doing random Google searches…..  your go-to place for information should be 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.

    I have said enough, do get back to me with any questions or if you just want to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you so much for sharing your experience, Mike. I’m glad your daughters have managed to find peace with your type of Lymphoma and I’m happy for you and your wife that you have four grand-daughters; and you are well!
    Food for thought then regarding telling my dad. 

  • Depends how good you are at keeping a secret.

    You will probably be on watch and wait for a while or longer.

  • I’m not good at keeping secrets; I actually like to be open and transparent… but both my parents have mental health issues which means they don’t deal with life very well. I also don’t live in the same country: speaking to them on the phone is not the same as facing them. 
    Thank you for responding Blush.