My name is Mark Heason. I’m now 60 and I was 59 when I found out I had kidney cancer. I’ve been married 35 years and we have two fantastic sons aged 29 and 26. I worked for Lloyds Bank for 35 years, predominantly as a commercial manager and after this I worked for 7 years supporting young adults with learning disabilities. I retired at 58 expecting a long and healthy retirement. I’ve always been sports mad and, as a result, very fit. At the time of my diagnosis I was playing golf twice a week, going to the gym regularly, running the local Parkrun and walking our spaniel. I’ve never smoked, drink moderately, have a good diet and I’m not overweight. As you can imagine, I did not consider myself a candidate for kidney cancer!

I found out I had kidney cancer in early May 2018. Right up to this point I was very active. I woke up on a Saturday morning with pain in my left side and a lump which had suddenly appeared. The following Tuesday I saw my GP and on the Thursday saw a urologist at my local hospital. I had an ultra sound scan and CT scan the same day and pretty much straight away they told me I had a 17cm cancerous tumour attached to my left kidney. On 25th May I had an open radical nephrectomy to remove the tumour and kidney, a 4.5 hour operation. Post op the urologist told me that when he started the op he discovered the tumour had ruptured and filled with a litre of blood. He had to drain this before he could remove it. Looking back now, it would have been even longer before I realised I had kidney cancer if the tumour hadn’t ruptured given I had no other symptoms.

Next time I saw the urologist he told me there were some remaining cancerous lymph nodes in my stomach and chest. These couldn’t be removed during the op, but would be treated with drugs. At this point I had a very positive mind set. I had an otherwise healthy body and I thought the drugs would get rid of the remaining cancer. It wasn’t until I met the oncologist for the first time in early July that the reality of my situation came crashing down on me. He told me, very matter of factly, that I had stage 4 papillary renal cell carcinoma, a rarer cancer. He would prescribe me drugs which would not cure me, but hold the cancer at bay for as long as possible. He was loathe to discuss prognosis, but I Googled this later and established it was poor. My friends at KCSN tell me not to believe Mr Google!

The oncologist put me on my first line of treatment, sunitinib. I did not question this and assumed it was the best course of action. It was about this time that my mindset really changed. I became more inquisitive and really researched everything that was happening to me. The NHS provide a great service, but there’s plenty more you can find out that they don’t tell you. I joined KCSN and this has been so helpful. They taught me to manage my care. I just wish I’d found the group earlier! As an example, on sunitinib you are put on a 4 weeks on, 2 weeks off regime. This is a tough drug, with multiple side effects. Through a colleague on KCSN, I discovered the 2 weeks on, 1 week off regime, much easier to cope with and hadn’t been offered by my oncologist. He did approve it, though. KCSN has also helped me to find solutions and alternatives for coping with side effects and it’s a safe environment for sharing emotional thoughts. Through somebody else on KCSN I became aware of the Calypso trial, for which papillary sufferers were initially eligible. By the time I finished on sunitinib in December, the doors to that trial were closed. If only my oncologist had advised and offered it to me I think it would have been a good route.

My next drug, which I started in early February 2019, was cabozantinib. I’m currently still on this. It’s not as harsh as sunitinib, but there are significant side effects. There are no breaks in treatment except for the odd one or two day break when toxin levels build too high. As at August 2019 I’m still on this drug, but my oncologist has dropped heavy hints that he will likely move me to my third and last line of treatment before long. In my time so far on drugs, I’ve had no further spread, but the existing cancer has continued to grow. There is a formula the oncologist uses to establish when a drug is not doing well enough and it’s time to try another one.

With papillary cancer being a non-clear cell cancer, which represents only around 20% of kidney cancer sufferers, it feels like there are far fewer options. The experts know far less. There aren’t as many lines of treatment and there is a distinct lack of clinical trials. It’s difficult not to feel discriminated against. For example, there are newer immunotherapy drugs now available to clear cell patients that aren’t available to non-clear cell. When you see the success these drugs are having, I wonder why we are not being given the same chance. Life is precious.

As I progress, I’ve physically felt my body change. I’ve lost weight and have far less energy or strength. Mentally it’s become harder to cope with the worry and uncertainty. My biggest worry is leaving behind my wife and two sons and the sadness this will cause. I’ve had counselling with a local hospice, which is good as I don’t want to be constantly talking about cancer with my family. It’s now also proving more difficult to fill my days. I’ve had to scale back previous activities as I get weaker. I read more and plan smaller bite size activities. Also many of my friends have rallied around me since diagnosis. They phone me or we go out for coffee/lunch. This has been fantastically helpful.

I haven’t set out to make my story a bleak account, but whichever way you look at it, it’s been the worst 15 months of my life. My future plans have changed forever. In fact it’s hard to plan ahead because of the uncertainty of how I will feel physically on any given day. I’ve learnt a lot about myself and I’m proud that I have at least tried to start each day with a positive mindset.