I struggled to find many stories where someone was treated with both chemotherapy and radiotherapy for stage 2 Hodgkin lymphoma. I had proton beam therapy, and waiting three months to know if it worked was probably the worst time for me. I would have felt better reading someone’s story if there was one, and that’s why I am sharing mine.
I was 27 and had just started a new job in Oxford. I had no history of any illness (I had never even had a blood test before!), but had developed a cough that would not go away. I also noticed that if I put my hands in the air, I couldn’t breathe properly. I didn’t know what was wrong, but cancer didn’t even cross my mind.
After about six weeks I went to see my GP, who gave me a nasal spray, but also arranged for a chest X-ray. Things moved really quickly from here. After the X-ray, I was called back for a CT scan and that evening the doctor called me saying she wanted me to go to the acute ambulatory unit for more tests. I was told I had a mass in my chest and the word ‘cancer’ was mentioned. At this point I was worried I had lung cancer.
I had blood tests and a biopsy the next day, when they confirmed I most likely had some kind of lymphoma, and from my symptoms and age it was text book Hodgkin lymphoma. But I needed the biopsy results to confirm this and a PET scan to understand the extent. As I had also looked up lymphoma, this felt like a better outcome than lung cancer! I started steroids right away.
I have a background in biology and friends in medicine, so already had a good understanding of cancer and was given lots of information about lymphoma. I also found the Lymphoma Action website, and was given lots of Lymphoma Action resources by the specialist nurse.
A week after the biopsy I had my appointment with haematology which confirmed my diagnosis. My diagnosis was bulky stage 2 Hodgkin lymphoma. My doctor said I could either have ABVD chemotherapy regimen for six months or I could have a combination of two rounds of escBEACOPDac and two rounds of ABVD which was likely to be more effective for me, but was also a tougher regime.
I opted for the escBEACOPDac and ABVD. The Doctor didn’t think I would need radiotherapy. From this point I thought 'The average person will be cured of this, I am just an average person, I will be fine. I just need to get through the chemo!' I also knew that my doctors were some of the best in the world, so had lots of faith in them.
Three weeks later I had a PICC line put in and started chemotherapy on the same day. The chemotherapy wasn’t as bad as I thought it would be. It mainly felt like bad flu and I felt very tired. My hair was really long beforehand, but I lost it after about 10 days, which I found upsetting initially. I found wigs uncomfortable, so didn’t bother with them as I wasn’t too worried about being bald, unless if was cold or sunny, when I used a hat.
I joined the Lymphoma Action Facebook group which I also found helpful, and was able to meet others going through the same journey as me.
I went in for my midway scan results and the doctor said 'Your results are good, but not perfect'. Most of my cancer had gone, but a tiny bit remained with a Deauville score of 4, which meant I either had cancer left or it was inflammation. I had the choice of another four rounds of escBEACOPDac or to go ahead with the ABVD as planned. We decided to go with the two rounds of ABVD as planned, as my overall response was good. But it was now much more likely I would need radiotherapy.
The team said I could be a candidate for proton beam therapy.
The team said I could be a candidate for proton beam therapy, although it was normally for young people under the age of 25. I was referred and accepted.
From this point onwards I found it much harder to be positive, because I knew that with cancer, you need a perfect response. You can’t even have one cell left. I was worried I was no longer having the ‘average’ response, despite also reading that radiotherapy was a common treatment for stage 2 Hodgkin’s lymphoma.
I found the ABVD chemotherapy much harder, which is strange because it’s meant to be less intense than escBEACOPDac, but I think it was the cumulative effect.
My post chemotherapy scan remained with a score of 4, so I went ahead with the proton beam therapy at University College Hospital, London where this specialist equipment is available. I was moved into accommodation which was only half an hour walk from the hospital as I needed to have the treatment every day for three weeks.
The treatment sessions themselves took longer than I’d thought. I was usually at the hospital for about 2 hours a day. A lot of the time was spent getting me into a specific position in my radiotherapy mask. The mask was incredibly tight – you can’t move a millimetre! I am not claustrophobic but can understand how it can be traumatic if you are. Having treatment every day was more taxing than I thought it would be - it was a reminder every day that I had cancer, whereas with chemotherapy there is at least a break in-between session where you can be at home and be ‘normal’.
The effect of the proton beam therapy was cumulative. It targeted both sides of my neck, collarbones, and chest, where the lymphoma had been. The proton beam therapy was over the entire original field of the lymphoma, rather than just the remaining bit, which is standard for radiotherapy at this stage.
For the first few days I didn’t notice any effect, but it gradually got worse, and I struggled with acid reflux, indigestion and pain while swallowing. Although I would say it generally wasn’t too bad.
It felt a really long time to wait to find out if it had worked, and for me it was the most difficult time.
I was told they would not do a scan until three months after my last proton beam session, as otherwise the inflammation caused by the therapy gives false positives in the scans. It felt a really long time to wait to find out if it had worked, and for me it was the most difficult time. I tried to forget about it, and went back to work full time, but it was definitely on my mind. I felt I couldn’t plan anything because I could be needing more treatment, even though I knew the chances were high that it would work.
The scan date finally came and I was told I was in remission on 18 December 2025. Once I had that news, I felt like a weight was lifted off my shoulders and I felt like I could be normal again!
I am on follow-up every four months in the first year, which will move to six months in the second, and then hopefully will be discharged. My hair is coming back (curly, rather than straight as it was before) and I’m excited to be able to get back to living a normal life! I will not let cancer define me, but I hope sharing my story will help others in a similar position.