Leo

‘I was diagnosed with cancer in 1984 at the age of 21. At the time I didn’t know it was lymphoma and it was nearly 30 years before I was finally given the exact diagnosis.

Thinking back, I noticed a huge lump on the left hand side of my groin. I went to see my doctor and was given antibiotics which didn’t have any impact, so my doctor organised for me to go to hospital. He suspected I had a hernia.

I was referred to a London hospital, where I had a scan under BUPA.  The scan was inconclusive, so a bone marrow test was done. I also needed an X-ray and recall I had blue dye injected in my feet for it. I also recall I had an injection of hot fluid and was told to breathe in as they took the image.  

I was told very little, although I understood I had a cancer. They surgically removed the lump in my groin and apart from going for regular check-ups for around 3 years, had no other treatment.  

Almost 30 years later, I lost 2 stone very rapidly without trying. On top of that, walking a few yards felt like I had run a marathon. I was referred to hospital and initially the doctors suspected TB or pneumonia. A scan revealed that my spleen was enlarged and was pressing on my left lung making it fill with fluid. I had to have a procedure called ‘talc pleurodesis’ to tackle the problem with my lung and I needed to have my spleen removed.

A biopsy was taken from the removed spleen and I was diagnosed with diffuse large B-cell lymphoma. Once I had recovered from the splenectomy, they started to treat me with a milder chemotherapy, R-CVP, which was then followed by 6 courses of R-CHOP.  I coped well with the treatment although I has some side effects. Losing my hair didn’t worry me, but I did struggle with terrible fatigue and stomach upsets.

The second time around I felt well informed throughout  - from tests, to diagnosis and treatment. I was also able to find information about diffuse large B-cell lymphoma from sources like Lymphoma Action.

My consultant was interested in my earlier diagnosis and managed to track the lump removed from my groin in 1984. He had it re-tested and found out I’d had Hodgkin lymphoma when I was 21. This was the first time an exact diagnosis was given to me after that first experience 30 years beforehand.’

June 2016