About three years ago I was treated for a tongue cancer and currently in remission. For the past six months I have been off work with anxiety and depression which is being treated with antidepressants and talking therapies. There has been no change in my mood so have been referred to a mental health nurse who is attached to the surgery. Before they will change my tablets etc they wanted GP to rule out any physical reason for my symptoms. The doctor called me in last week and told me that I needed to be referred to a hematologist for a light chain test. The referral letter also mentions leukaemia and lymphoma. I have done some Google research and the light chain tests seems to be for myeloma. I am confused about which forum I should join and was wondering if someone could point me in the right direction.
Hi Mick 28.12.22 and I am sorry to hear that you are on the blood cancer investigations rollercoaster.
I am Mike and I help out around our blood cancer groups.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.
I am no expert….. but over the years I have seen mentions and come to understand that ‘Light Chain’ definitely relates to Myeloma…… but also for a few of the rare 60 types and sub-types of Lymphoma….. also referring to the diagnosis of Leukaemia….. but can also be part of the diagnosis of some of the rare blood conditions that in the past 10 or so years are now seen as blood cancers.
So until you have clarity, jumping in and joining one of the 13 groups covering these blood cancers may put you down a unhelpful rabbit trail.
Blood cancer is complicated and there are a lot of different types and sub-types types…… even within specific groups….. like 60 Lymphomas….. and there is no one treatments fits them all,
I would stick with this thread initially till you have some clarity and as always I will be here to chat with at any time.
Hi Mick….. I am doing great although I have been recently diagnosed with Prostate Cancer but on Active Surveillance for this going forward…..
Having been on my journey for 26 years with Lymphoma but also other health conditions including Asbestosis I have learnt that stressing thing out is just not helpful….. the only thing this achieves is making yourself physically and indeed mentally ill….. deal with the issues once they come along.
Your appointment with the Haematologist will most likely trigger more tests….. from experience Haematologists do tend to deal with facts as they can only look at the various test results as one picture to pinpoint a specific blood cancer.
In Lymphomas for instance the main diagnostic tools are PET/CT scans, biopsies of any mass or raised lymph-nodes and in some cases Bone Marrow Biopsies…… in all my 26 years I have had no blood test that said Lymphoma - crazy as it is a blood cancer!!!!
Leukaemia, Myeloma and the ‘other’ blood cancers tends to be Full Bloods, PET/CT scans and Bone Marrow Biopsies.
So you do need to be prepared to be a patient patient 
I was basically on Active Monitoring for the first 14 years after my initial Lymphoma diagnosis in 1999…… although I did have regular UV skin treatments - the joys of living with an 8 in a million skin Lymphoma.
When my se ind 4 in a million Lymphoma appeared it was a full on 2 years treatment (Oct 2013 to Oct 2015)….. 750hrs chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants…… with a 2 year recovery.,,,, but here I am, getting on with life at 70.
I have no hang ups being on Active Surveillance for my Prostate Cancer….. I actually had a biopsy 3 years back and that was clear but my PSA blood tests have regularly fluctuated so it was only time before a positive result was found….. but there are lots of tools in the box if they are needed.
Back in 1999 when I was diagnosed with my first Lymphoma the then median survival rate was set at 3-5 years…… I have surpassed that by over 20 years…. This is a clear indication as to the developments in cancer research and treatment.
