My daughter who is 21 has just been diagnosed with this and she has been looking for a diagnosis for over 3 years. It started when she was about 17/18. She has been diagnosed with low grade lymphoma. Has anyone got any advice please on what this means, how to handle it or does anyone have personal experience of this themselves. I’d really appreciate any help that you can give us. Thank you x
Hi Flora Flower and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your daughters diagnosis. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with another type of rare, incurable but treatable Low-grade non-Hodgkin lymphoma called Cutaneous T-Cell Lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is slightly different from your daughters I do appreciate the challenges of this journey rather well.
Non-Hodgkin lymphoma is a very complicated condition to the point there are over 60 types and sub-types of Lymphoma.
Her Cutaneous B-Cell Lymphoma (CBCL) is much the same as my CTCL but it just grows in a slightly different way through her B-Cells. It took a good few years for me to be diagnosed, this is not that unusual as the presentation of these conditions are often mistaken for run of the mill skin problems,
Cutaneous (Skin) NHLs are rather rare..... only 7 in a million are diagnosed with my CTCL every year in the UK but as these are mostly Low Grade they grow rather slowly....... but can become aggressive so regular monitoring becomes part of life.
I was basically on Active Monitoring (Watch and Wait) for about 14 years before I had to have full on treatment (See my story) but during these first 14 years I was having skin treatments as though I had bad Psoriasis. I am now turning 67 next week and living a great life so at the start take encouragement from this
Could I ask a few questions:
Has she been having any treatment and if so what?
Where is she being treated at - her hospital?
What has she been told about her condition?
You will have lots of questions so do ask away, the group is always around to help more or just to chat........ but the members with skin NHLs is small ((hugs))
