Hello
I've just had confirmation that I have CLL. I'm on watch and wait. Do I tell my adult children? My brother? I don't know what to do for the best
Hi GREEN3322 and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.
I don’t have CLL but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my blood cancer ‘type’ is different I have experienced ‘the’ treatment journey.
Chronic Lymphocytic Leukaemia is an odd type of Leukaemia as along with Small Lymphocytic lymphoma (SLL). CLL and SLL are different forms of the same illness. They are often grouped together as a type of slow-growing (low-grade or indolent) Non-Hodgkin Lymphoma....... yes very confusing.
The green link about will take you to some great information on the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Buddy Service where you can be linked up with someone who has walked the journey before.
CLL usually grows very slowly and there are lots of effective treatment options f required. The generally aim is to keep the lymphoma under control rather than curing it.
Most people live with CLL for many years, with some periods when they need treatment, and other periods when they don’t. It is hard to predict how long it might be before you start treatment.
I was basically on active monitoring (I don't like the term watch and wait) for 14 years before I needed full on treatment, yes I had regular appointments and as my type of NHL was presenting on my skin I was treated as though I had bad Psoriasis..... yes very confusing (hit my community name to see my story)
As to telling your family - this is up to you but you do need to see this as living with a life long health condition like diabetes but unlike diabetes you will have long periods of time when you won't need treatment. So at some point in time family will start to ask questions. Back in 1999 I was totally open with my family as it was one thing less to be concerned about.
I have talked with many folks with CLL through Lymphoma Action and many have never had treatment.
I see you have also joined our dedicated CLL, SLL, HCL group, this would also be a place to connect with others with the same condition.
Have a look at the information and as always I am around to help out as best as I can.
