Testicular cancer – but not as you know it
Among the guys from It’s in the Bag, I’m known as ‘The Anomaly’. That’s because in April 2008, I was diagnosed with ‘mediastinal seminoma’ – basically testicular cancer in your chest!
Having testicular cancer where the primary tumour is located outside the testicles is exceedingly rare. But it is possible, and it happened to me. Each year, there‘s only an average of one case diagnosed in the whole of the South-West peninsular. So you could say that I was the 2008 case.
My mystery illness
For me, discovering I had cancer wasn’t as straightforward as finding a lump and getting it checked out. It took five visits to my GP over a period of two or three months to get referred to an Ear, Nose and Throat specialist, who immediately sent me to Southmead Hospital for a CT scan. I thought I had nasal polyps! My breathing was a bit wheezy, I had what I thought was sinus pain and my neck had begun to swell. But the CT scan showed that I had a tumour in my chest cavity, near to my heart.
The darkest days
I’d never been seriously ill in my life before, and to be told that I had a life-threatening disease was like a sledgehammer blow. I was completely shocked. We were in a small consultation room when the specialist broke the news, and I remember looking around as he was talking to me, thinking he must be talking about, and to, someone else. The shock turned into a sort of numbness.
At the time, I didn’t know it was testicular cancer. The week it took between being told I had a malignant tumour in my chest and confirmation that it was actually testicular cancer was the worst time of my life. I felt broken, very lonely and very scared.
Chemo packs a punch
Things improved once I’d got my diagnosis. As soon as I knew that there was a good chance of a complete recovery I was OK, especially as after the first session of chemotherapy I immediately felt so much better.
I had to have four courses of chemotherapy in total. Each course lasted five days, making twenty days of chemo in all (that’s a lot!) Treatment would start at about 3pm in the afternoon and often didn’t finish until around midnight. The chemo itself wasn’t so bad. I didn’t have too many side effects besides fluid retention (which made me look like the Michelin Man at times!) The worst thing was having to be an inpatient and stay at the Oncology Centre over the weekends – it got very boring at times as I was often in on my own!
The chemo has a cumulative effect on you, which takes its toll over time. It wipes you out, and you have to take a lot of time to recover – resting and sleeping a lot in between cycles.
I found I was able to deal with the stress of having cancer, mainly because I had loving family and friends around me who were very supportive.
All the messages and cards of support I got were overwhelming, and made me very emotional at times. You find out about your true friends in such a situation. Several people travelled a long way to see me more than once, and I was very appreciative. Visitors helped to break the monotony of the chemo.
Also, the staff at Bristol Haematology and Oncology Centre were all brilliant. We’re lucky here in Bristol to have such a caring and professional team on hand. To be honest, when I was first diagnosed I wasn’t too sure what to expect, and because I was such an anomaly there was nobody around with the same type of tumour as me who I could ask. But I couldn’t have asked for better treatment. I owe the Oncology team so much – my life in fact!
A great result
Because I didn’t have an initial operation, there was always a chance that the chemo might not have removed the entire tumour. As it happened, my small ‘residual mass’ (what was left after chemo finished) turned out to be only scar tissue. Finding this out was a huge relief! From then on I just had to go for regular checkups – first of all every three months, then every six months, and now it’s every year. Bit like having an MOT.
The first few times I went back to the Oncology Centre for follow up I got very anxious, as it reminded me of when I was first diagnosed. But now its OK and I know the routine – chest x-ray, blood test, quick chat and out!
My way of saying thanks
I’m one of the original group of ex-patients and staff who formed It’s in the Bag in 2009, and I’m currently its chairman. It’s an honour to be associated with the fund, and helping to turn a group of volunteers into a proper working organisation has been one of my main achievements in my life since treatment. I got involved because I wanted to help other men who were facing the same journey, and it’s also my way of saying ‘thank you’ by giving something back.
All about the positives
I won’t pretend that being a cancer patient was a bundle of laughs, but I can definitely say that the experience has changed my life – and in very positive ways. I now try and live much more for the moment and worry less about the future.
Before having cancer I worked all over the UK and in Europe, and I was away from home a lot of the time. But once I’d gone through all that chemo and got better, I realised I didn’t want to do it any more. So I started my own PC repair business here in Bristol. I love it and wish I had changed career path years ago!
I’ve also made a bunch of very good friends from the IITB group, who I would never have met if I hadn’t had testicular cancer.
If you’re about to start treatment, or currently going through treatment for testicular cancer, then try not to worry. You are in very safe hands. Having testicular cancer is not the end of the world. Far from it. The survival rate is very good. I’ve been there, and mine was a complicated case. But I’m here to tell my story like so many others, and that should reassure you.