Diagnosed at 33 with cll and have discovered I've had it from early 20's

Hi,

I have just been diagnosed with cll at the age of 33 and they said that they had got some of my old scans photos over 10 years ago which put me early 20's they had spotted it then after looking back. I have lived a very active life since, amateur boxing, football, gym, you name it I've done it!

How ever this as only come to light from 4 ear infections and lumps in my neck so after pushing for tests I unfortunately got told it's cll.

I'm in good spirits and I'm training harder than ever and hope that the lumps get stop going and that I won't need treating for many years.

Reading all of your posts has give me some hope and made me feel much better.

Thanks and god bless all x

[AdrianUK]

Well the good news is you’ve already shown that it is slow growing in your case by having it for so long. I take it you do t have a very high lymphocyte count? There’s some suggestion that being fit and healthy as it sounds like you are might also help to keep the disease at bay. Certainly this disease will try and slow you down so the idea is that training may help to be a counter weight to that. We hope you may have a LONG watch and wait and perhaps never need treatment. It’s still tough hearing such a diagnosis so do give yourself permission to grieve a bit. But for sure do your best to enjoy life and your exercise!

[Lojane]

The first thing you need to know is what type of CLL you have got. You have to find this out through the FISH test which identifies which genetic variation you have. If you’ve been well for the last ten years hopefully you have the more benign type and in any case the treatments have advanced to the stage they are now talking about a cure. My husband was diagnosed five years ago and although he is a lot older than you has been getting on with his life without needing any treatment .

Sending you my my best wishes x

[thompsonellen]

Sorry you are joining our "club." I also hope you have a long watch and wait. Even after treatment, you can still be very active. I'm currently training for a 10 mile run in May. I hope you don't need treatment for a long time, of course. Do get the FISH test so you know more precisely where you stand.

[Bubnojay]

Welcome Danny

Wishing you a long and healthy life, sure your keeping fit is going to be a help. Fish testing not usually done in the UK until needing treatment. As you have read great strides are being made in the treatment of CLL so every reason to be positive.

Good luck

Bubnjay1

[Billhere]

Danny!

Early diagnosis is a blessing in disguise! A young healthy body is a great starting point to have. Many future treatment paths if you ever require treatment. Also tune in to CLL Society.org. Welcome to a really great group of people.

[Smakwater]

Danny,

Take encouragement that there is considerable advances in CLL treatment being made. Find a knowledgable specialist, be proactive and know your genomic profile.

Keep up the active life style. I believe that you will be glad that you did.

JM

[Hidden]

Thanks all.

I am currently waiting to see a specialist in Leeds. I'm still in shock as I am fit as a fiddle and very strong. They say I will be on an active watch for now?

Not sure what fish testing is? I have just had an mri scan to determine where it as spread and it is in all the obvious places, groan, armpits, stomach and kneck. They say that they are only 20mm in size so don't need treating yet, dies anyone know what sort of size they get before needing treatment?

I also had some blood samples taking and everything is fine and normal within my blood? Strange.

[DriedSeaweed]

Generally, I have been told 5-10cm is when treatment discussion starts.

Hopefully your specialist will fill you in more soon.

[Hidden in reply to DriedSeaweed]

I hope that that is true 👍

[DriedSeaweed in reply to Hidden]

It is weird to be told you might have cancer. By the way it is not curable and you can go home now since we might not treat you for years...

If I were you I would do a little crash course in vocabulary to make the best of your visit. The words or concepts you still do not understand by the visit ask the specialist. If you visit the specialist in the future you will be speaking at a deeper level.

cllsociety.org/toolbox/cll-...

FISH and IGVH status are helpful prognostic indicators but not all countries do them. Perhaps other UK members can fill you in.

So having SLL/CLL in early 30s is supposed to be really rare. 0.3% of cases on the last bar graph I saw. Although it feels like there are more of us. Detection might be getting better..?

When I went to NIH in the USA one question they had for me since I was diagnosed last year at 31 was if my FISH included "translocation 11 14" notated: t(11;14)

Sometimes this can be useful in ruling out Mantle Cell Lymphoma. Again the young age is unusual so it would be good to rule out other cancers.

You might not see your specialist very often if you can delay treatment so make a list of questions. When in the moment it could be difficult to remember everything.

[Hidden in reply to DriedSeaweed]

Hi,

Thanks for the advice. When they told me they might as Well of been talking in chinesa.

My littriture is the best anyhow haha.

Think it's been nearly 4 weeks since being diaosgnesd and I just feel like I'm in Lymbo, I just want to see the specielest and find out what's happening.

[DriedSeaweed in reply to Hidden]

I remember the feeling: Why are they taking so long don't they realize I have cancer??

Welcome to CLLymbo! We are all members..

In the meantime learn as much as you can.