Non Hodgkin's lymphoma

[sausageface]

Hi all.

My husband was diagnosed yesterday with NHL and obviously we're struggling to control our emotions at the moment, with every possible scenario running through our heads.
It's 2 lumps in his neck. He's due a ct scan, hopefully by the end of the week and we have a haematology appointment today- I assume to order more bloods and potentially talk about stages etc? Not sure if they can do this before the ct?

Anyway, I'm here to ask you to share your positive stories from this situation if you have any? I can't bring myself to google incase of seeing any negative cases, I just need to fill my head with the positives. We've been told this is usually really easily treatable and he has literally no symptoms... you literally wouldn't know anything was wrong if it wasn't for the lumps! I find that comforting that it's probably not widespread (optimistic maybe?) but for him it's worrying that it could be more spread and he just doesn't know.
Any words of encouragement? Definitely looking for a handhold right now xx

Hi sausageface. Sorry to hear about your husband's diagnosis and of course this must be a worrying time for you both .

I only know one person who has had this illness and that's my FIL who was diagnosed nearly two years ago when he was 77. He had a course of radiotherapy, am not sure about other treatment (certainly not chemotherapy) and is now in a position where he only needs check ups every 4 months. I don't know if they are saying he is "in remission" but he's certainly carrying on as normal and living quite happily with it. Infact, he has been diagnosed with another type of cancer since then (skin cancer) and has been treated successfully for that too. Plans are definitely being made for his 80th birthday next summer.

I too am sorry to hear about your DHs diagnosis but can empathise because we went through this last year. At the beginning of 2019 my DH was experiencing some difficulty swallowing. He went to see the GP who referred him to hospital for tests. The hospital was busy on the day so he was asked to come back another day! Fortunately I have private medical insurance through work so we used that.

DH went for tests and scans and it was found he had a NHL on the base of his tongue. The good news was that it had been found early and it hadn't spread to other parts of his body. We were told it was very treatable.

First came the chemo. DH was going every month and I think he had four sessions. I'll be honest and say it's not fun. He wasn't bothered about losing his hair but it gave him awful mouth ulcers which he was given special mouthwashes for, and he was extremely tired all the time. Anyway he got through it and managed to keep on working throughout. He then had to have some radiotherapy sessions to complete the treatment.

From initial tests to end of treatment it went from April to November but DH was given the all clear at the end. I wish the best for your DHs cancer journey OP. This will be stressful for you too and sometimes it's hard because of course all the focus is on the patient and you will need support too. Keep posting on here so that MN can offer what support we can x

Both my brother and my mum have NHL. There are many types of the lymphoma and not all are the same.

My mum's is incurable, mostly in her spleen, but progresses slowly and is very manageable. It comes back every 3-4 years, she gets an anti body therapy drug rituximab for 6 sessions, very few side affects and that puts it back into remission for another few years.

My brothers type was very aggressive and throughout his body, he has been in remission for over 10 years now, so I guess that means cured. He did have a hard time of it for many years with chemotherapy, remission for a few years then relapses and eventually a bone marrow transplant which was the turning point.

Think there are 30-ish types in the non-hodgekins lymphoma group. I would avoid Google until you know which one he has.

My DH is awaiting results of some blood tests to see if he has lymphoma, so we don't know what kind if any yet. We have been told not to Google so I'm trying not to!

Ben Hobday had NHL and got back to top level eventing if you're looking for a success story.

Thanks everyone for your replies! I really wasn't in the best place when I posted! I wanted to update incase someone sees this in a similar situation and hope it offers some help.

The haematology appointment confirmed that he has NHL, but a slow growing type called SLL. He's had a bone marrow aspiration and has his pet/ct scan in a few days. Both of these are to check for spread. If the bone marrow comes back that it's in his blood, his diagnosis would change to CLL but this has the same treatment plan of 'watch and wait' (I'm unsure if the results of the ct scan will change this treatment plan or not)
Basically as it's not aggressive yet and it's slow growing they just leave it ticking over with regular checks until a time comes when it starts causing a problem. So live with it basically! This brings its own issues/life adjustments but it also gives us time. And what time gives us is more chance of medical advances to hopefully one day cure it (they refer to this as treatable rather than curable)
Hope this helps someone out there who's in the same situation!