Janet

In January 2014 I was diagnosed with low-grade follicular lymphoma stage 1. It wasn’t causing me any problems and so an active monitoring (watch and wait) approach was used. In fact, I never needed any treatment and after three years of regularly attending clinics, it was agreed that I could be discharged.

Over the next nine years I was fit and healthy. My team told me what to look out for – lumps, night sweats, fatigue and fever – and I knew I could get in touch with them if I was worried about anything. Over the years I did get in touch if I was worried about anything or if I had a query, like one about vaccinations. 

In May 2023, I lost my appetite and found that I was skipping evening meals. By July 2023 my head was itching but my doctor thought this could be a sign of mild depression. I also noticed that I was feeling more tired than normal. 

I still had in my mind the symptoms I should be looking out for and thought: 'Well I don’t have night sweats or fever and I’m probably just tired because of my age. After all, I am 75 now!'

After 9 years of really good health, lymphoma was a little off my radar. 

At the end of August I had severe abdominal pain. I told the GP that I had lymphoma but said to him that I didn’t think this was related as none of my lymph nodes were swollen and none of the symptoms I was looking out for had appeared. He pointed out that I have lymph nodes all over my body and that I would not be able to feel them in my abdomen. As a result, he referred me to a special unit where I had bloods, a PET scan and a biopsy. Waiting for the test results was a really worrying time. 

I was looking for something else. I was focussing on any development being of the follicular lymphoma. 

Janet

The scan revealed a 12cm lymph node mass. The haematologist explained that the tests had come back with a diagnosis of diffuse large B-cell lymphoma (DLBCL). My low grade follicular lymphoma had transformed into DLBCL stage III, a high-grade lymphoma. I couldn’t believe this had happened and felt angry that I had missed the clues because I was focussing on any development being of the follicular lymphoma. 

I don’t remember being told that my lymphoma may change and that the symptoms would be different. I don’t now whether I am unusual, but I wanted to write this so that other people on active monitoring are aware and don’t ignore any symptoms, even if they don’t seem to be ones they had expected. If you have any health worries, don’t be afraid to contact your healthcare team. 

I am currently having the chemotherapy regimen R-CVP with the antibody polatuzumab vedotin. So far it is going well.