Persist! Persist! Persist!

A  special blog for Kidney Cancer Awareness Week 2023 by Richard Jetten

I was 41 and running our own Spanish Tapas restaurant when one morning I noticed my wee had turned red, it looked just like Cherryade! Initially I dismissed this as a bad bottle of red wine from the night before. The next day the issue persisted, so I mentioned it to my wife, who felt I should see my GP. I hadn’t seen a doctor for over 20 years and had no plans to change that, so I did nothing. The third morning with the same issue, even I thought I might need to see the GP.

I got an appointment on the same day with the GP. He asked to see a sample, which I produced in the surgery toilet. As soon as I walked back into his office, he looked at the sample in my hand and said – “well it’s one of three things – have you eaten a lot of beetroot?” (I hadn’t) “Have you spent a lot of time in Chernobyl?” (Again, I hadn’t) “Then you’ve got a serious problem.”

That was the start of 12 months of investigatory tests. Various appointment letters would come through the post and off I would go to the hospital for another test – which ranged from ultrasounds to x-rays, a cystoscopy (not for the faint hearted!!) to finally a CT scan. Following  the CT scan, I received a letter informing me of a meeting with the Oncology department at my local hospital. I thought this might have been an error as all my previous appointments were with Urology. I phoned the number at the top of  the letter, “Hello Urology secretaries how can I help you?” “I’ve just received a letter from yourselves with an appointment, I just wanted to check if this is right and what the appointment is for?” “Yes, that’s right, its so the consultant can discuss your cancer treatment with you.” “So, you’re telling me I’ve got cancer!” That was the first I had heard of my diagnosis!!

By this time our restaurant had failed, the debts associated with the restaurant had caused us to sell our home and we had just moved our family into rental accommodation – so the news of the cancer hit us all extremely hard at a time when we were already at an all-time low. We didn’t have much time to process it all. The appointment with the Oncologist had been a brief discussion, “what would you like us to do, we can remove your kidney and the cancer, or we could wait to see if the tumour grows any bigger, as we are not 100% sure its cancerous, but we think it is.” It took my wife and I, two seconds to decide. “Cut it out.”

And so, my right kidney, along with a lymph node which the cancer had enveloped, was removed. Following a biopsy, it was confirmed the tumour was cancerous.

Three months after my operation I was able to start a new job returning to my previous career as an accountant. Initially, I had CT scans every 3 months for the first year to monitor any possible return of the cancer. After 12 months, there were no signs of concern, so I was scanned every six months.

This was my routine for the first six years following my initial surgery. By now, I was telling people I had cheated cancer by just having my kidney removed. I believed I had played my get out of jail free card! As there had been no issues in the preceding 6 years, it was decided to move to annual scans. At the meeting to discuss the results of the first annual scan, I was told the cancer had come back. A lymph node in my right kidney bed, where my previous cancer had been removed, now appeared to be infected by the cancer. My first reaction was fine, “cut that out.” I was told as the tumour (lymph node) was so close to my vena cava (one of the two largest blood supplies in the body) that it couldn’t be biopsied for fear of puncturing the vena cava and for the same reasons it couldn’t be removed surgically, thus it could only be treated with drugs. I didn’t like the sound of the drugs and pushed back for a surgical option. I was lucky, there was one surgeon in my local hospital who thought he could remove the tumour. He was good to his word and six weeks after the surgery I was back sat at my desk at work, now once again ‘cancer free.’

Following this unexpected reappearance, I was back on the three-monthly scans. The results from the second of these was not good. Nine-months after the surgery to remove the initial regrowth, the cancer was back again, and another infected lymph node was found in my right kidney bed. This time there was no option, the cancer appeared to be on the warpath, we had to treat it more generally, rather than another isolated surgical intervention – so I was given a drug treatment.

This drug was Sunitinib, one tablet a day. Compared to surgery it felt like a lame effort to fend off the cancer, a ‘pain free’ option. How wrong I was, within a week of starting the Sunitinib I was experiencing tension headaches, which were verging on migraines. After 3 weeks on the Sunitinib I was forced to take sick leave from work – the headaches were so bad that I couldn’t focus on my screen and had to take more frequent breaks. It felt as if my head were going to explode and all I could do was lie on the bed. After 26 days on the Sunitinib, along with the headaches, my blood pressure had risen to dangerous levels despite taking the highest dose of the available blood pressure tablets. And so, my treatment was stopped.

Four weeks later, we tried another drug – Pazopanib, a sister drug to Sunitinib. This time I lasted seven days before the headaches and the blood pressure issues became too much and again, the treatment was stopped.

It was time for a rethink. Six months had passed since the scan which had shown the infected lymph node. Despite not having had any effective treatment, my latest scan was still only showing the one affected lymph node. Could we treat this as an isolated regrowth and revisit the surgical option or some other direct intervention later? I raised the question with my consultant – he immediately ruled out surgery. Cryoablation was also ruled out, but my consultant did suggest that SABR (Stereotactic Ablative Radiotherapy) may be an option and so I was referred to St James in Leeds.

SABR is a radiotherapy treatment which differs from standard radiotherapy by using very targeted/precision bursts of high dose radiotherapy to treat individual tumours. This seemed like a perfect solution to my one problem tumour/lymph node. All went very well at first. I was seen very quickly in Leeds, a body cast was taken (to be used when the treatment was being delivered, to ensure I laid in exactly the right position) and more CT scans were taken so that the programme of treatment could be designed. Unfortunately, these scans showed I had in fact four infected lymph nodes – the team at Leeds were only able to treat up to three, so I was declined for the SABR treatment. Instead, I had two weeks of standard radiotherapy treatment, which successfully treated the four tumours and after six-weeks of recovery I was again able to return to work. By this time, I’d been off work for eight-months.

I settled back into work as if I’d never been away, or at least that’s what my boss told me. Then, the first three-monthly scan again showed the cancer was back again. This time I would be treated with a drug called nivolumab, an immunotherapy drug, which would encourage my own immune system to attack the cancer directly. This was a monthly infusion/drip into my arm. After the first infusion I was able to last about a fortnight at work, before I experienced headaches and high blood pressure and again had to take sick leave. I had four months of nivolumab, in which time there was no positive impact on my tumours, so it was decided to stop the treatment. My tumours had grown substantially, I was in significant pain, to remedy this I had another week of radiotherapy, which removed all my pain.

Rather than returning to work, I started on another drug, cabozantinib, which is similar to the sunitinib and pazopanib I had been on before. This time the dose levels were increased gradually over time, to avoid the headache and blood pressure issues. This approach worked and after three-weeks we were up to 40mg a day – considered to be an effective dose.

Then I experienced three-days of virtually constant vomiting. I couldn’t keep anything down and had become very dehydrated. My wife was concerned and phoned my cancer support line at the hospital. The advice was to get me into the hospital as soon as possible, to assess what was going on. Once I’d got to the hospital, they took one look at me and declared I was staying in overnight.

The next day I moved to the Intensive Care Unit. I didn’t know it at the time, but I was experiencing a diabetic coma incident. I was in ICU for four days as they brought me back from the brink. A further fortnight on a ward followed as my blood sugars were brough back under control – because I was now an insulin dependent type 1 diabetic!! That took some understanding when I was first told. I thought I’d gone into hospital due to the side effects of the cabozantinib, but the actual cause had been the long-lasting effects of the nivolumab, my previous treatment. Whilst it had been ineffective at combating my cancer, it had done a thorough job of attacking and destroying my pancreas – thus I had been turned into a diabetic – virtually overnight!

The hospital stay was a wake-up call. I’d been forced to give up work and to take early retirement on ill health grounds at 51. Giving up work, was hard, I believed I had plenty to offer, and I’d miss being part of a team. It was time to focus on the important things in life, stay as well as I can for as long as I can and do as much as I can. It’s a cliché but I needed to focus on getting my affairs in order and making memories. I sorted out a funeral plan and maxed out my over 50 insurance policies! If the worse was to happen I’d at least make a paper profit – that was the accountant in me. Holidays and weekends away would become my focus.

My cabozantinib treatment had been stopped when I was hospitalised but was restarted just prior to leaving hospital. The first three-monthly scan showed a good rection to the drug as my tumours had shrunk and the next, showed even more shrinkage. Eventually all my tumours were shrunk to their smallest possible size. This was the situation for almost two-years. Then, growth in the tumours were detected and this is where I am at now. My cabozantinib treatment has been stopped and I am now on a drug called lenvatinib which has again caused issues with my blood pressure. Once the blood pressure issues are under control, we will then introduce a 2nd drug, everolimus, which will work alongside the lenvatinib.

Life has changed beyond believe since my original diagnosis. I was lucky to have my so called ‘cancer free’ time after my initial surgery. Although it didn’t feel like that at the time. I always feared the cancer coming back. A little voice in my head was always saying ‘dead man walking.’ The last four-years since my first regrowth have been increasingly difficult, every set back is difficult to accept, but accept them I have to. As they say when the ‘going gets tough, the tough get going.’ In reality though, some of the treatments I have benefitted from, despite their side effects, were not available when I was first diagnosed. The initial seven-years ‘cancer free’ gave me time and the opportunity to gain from the new treatments. Each subsequent treatment has in turn bought me more time to be able to benefit from the latest new treatment. The availability of new treatments continues to give hope, so long as there is another treatment available. Currently the lenvatinib and everolimus appear to be the last treatment options available to me, at this time. This could change as more treatments become available. I am also actively pursuing potential treatments under trials, but that’s another story!

My advice? Never, ever give up.

Richard.

#kcaw2023