Tony

The challenges of an ill-defined lymphoma, as it took such a long time to get a diagnosis of skin lymphoma

Tony with his wife June in Egypt

‘In 2001, with a little help from an article in the Lymphoma Action magazine, I finally thought I had discovered the name of the skin condition I had been living with - cutaneous B-cell lymphoma. 

 

To put things into context, in1985 I consulted my GP about some itchy lumps on my upper arms. He dismissed them as nothing more than fatty tissue. The following year, I was referred to my local hospital where the lumps were cut out and sent for analysis.My next hospital appointment was with an oncologist who acknowledged that I had cancer – a low grade non-Hodgkin Lymphoma.

 
I had never heard of lymphoma, high-grade or low-grade, Hodgkin or non-Hodgkin
Tony

 

I had never heard of lymphoma, high-grade or low-grade, Hodgkin or non-Hodgkin and in that era it wasn’t very easy to get information. I was in my mid-forties, with a wife and two teenage sons. I had a lot of worry.

 

The rest of the period up to 2001 became a round of radiotherapy, X-rays, CT scans and more minor surgery to remove cancerous lumps. During this period I became more and more frustrated as I still did not have an accurate diagnosis. On a Lymphoma Action bike ride I met many other people with lymphoma who could not only quote me chapter and verse of their precise diagnosis but also the stage they were at. All I knew was that I had a low grade non-Hodgkin lymphoma.

 

During this period I took early retirement. My ill-defined lymphoma was a factor in my decision, although in all honesty I’d had enough of a very stressful job as a finance director involved in implementing poll tax at a local level. 

 
Over 30 years later, I am still going strong
Tony

 

I was eventually referred to a professor who listened carefully to what I had to say and said that he was inclined to agree with my diagnosis but would carry out further tests before committing himself. While I was there, one of his team removed a lump that had re-grown and took some blood. I went back a few days later for a bone marrow biopsy. After confirmation of the diagnosis at my next appointment, I was introduced to other members of his team including the senior radiologist who was on the phone to me as soon as I got home with dates for my treatment.

 

Over 30 years later, I am still going  strong, going to the gym 5 days a week, along with doing a couple of yoga classes. Despite having a bit of a trek for my annual check-up, I’m glad they are still keeping tabs on me and my skin lymphoma.’