Morning all. Otherwise fit and ‘healthy’, but now 24 hours in from diagnosis with SSL and still a little shell shocked! I was told 47 years old is on the ‘younger’ side of the average age for this; I was wondering if that’s correct based on the general experience of people on here?
Hi Gaz99 and a warm welcome to this corner of the Community although I am sorry to see you joining us.
I am Mike and I help out around our various Lymphoma groups and I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL...... then a second type of more aggressive Lymphoma appeared in later 2013 reaching Stage 4a so I do appreciate the challenges of this journey rather well.
When you say SSL....... do you actually mean SLL as in Small Lymphocytic Lymphoma?
As for average ages...... these are just an average and to get that average there needs to be people older and unfortunately younger........ so in reality being diagnosed with a type of Lymphoma at 47 is actually not that unusual.
I was looking on the Lymphoma Action website and it says....
Around 4,500 people are diagnosed with CLL/SLL every year in the UK (67 in a million) – more than 12 people each day. It affects nearly twice as many men as women. It is more common in people over 60, with an average age at diagnosis of 72 years. CLL/SLL is rare in young people.
I have been volunteering on this Community and another Lymphoma specific community for about 7 years and I have talked with many folks much younger then yourself who have been diagnosed with SLL and are still getting on with life.
My type of rare 7 in a million CTCL is normally found in the age range of 50 and 74....... so the average would be 62...... so I was on the young side to be diagnosed...... lucky me..... but I turned 68 last November and am still living a great life.
Happy to chat more.
Many thanks for your reply Thehighlander and all the information. Yes, it is Small Lymphocytic Lymphoma 
. Still pretty shell-shocked 48 hours in, but very determined going forward.
Looking forward to chatting to you and everyone on this new journey!
Gaz
Good morning Gaz99 …… you will get over the initial shell shock…… SLL is seen in the same light as many Low-grade non-Hodgkin lymphomas…… slow growing, life long conditions, treatable when required and it’s highly likely you will not die because of it, but with it.
Are you on any treatment?
Very often the initial approach is what is called Active Monitoring (Watch and Wait) ……. in simple terms you don’t get treatment until your condition has progressed to a point where treatment will make a significant difference….. that was basically me for the first 14 years.
We do actually have a dedicated group that covers CLL, SLL and HCL. Join the group and put up a post but you will find it on the slow side due to the rarity of these conditions……. But you can have a look at the old discussions.
