The Relentless Monster

As Kidney Cancer Awareness Week 2023 is about to start, we are grateful to Mike Tunstall for this special blog 

It started in the summer of 2009 with a dull ache down below, in one of my testicles. For reassurance I went to my GP who suspected nothing sinister but, nevertheless arranged an ultrasound scan. This showed a tumour on my leftkidney. Shocked and upset I had a left laparoscopic radical nephrectomy in the September. A big operation that I was in hospital 5 days for. Unfortunately, I developed an infection about a week later and ended up hospitalised for a further week during which the infection was drained.

I recovered quite quickly and resumed normal activity within a few months. Following the operation, I had 6 months CT scans which were in place for 2 years, after which they were annual. I showed no issues…….. Until 2016!

This was when a tiny recurrence was spotted on my remaining kidney. Following a discussion by my MDT it was recommended that I could have nephron sparing surgery to remove part of the kidney and tumour. Alternatively, they could watch it for a while, or consider cryoablation. The MDT recommendation for surgery did not appeal to me one bit! There would be a tiny chance that I could lose my one remaining kidney and end up on dialysis and this wasn’t something I wanted to gamble with! So, I chose to have it treated with cryoablation and, despite excellent facilities in Liverpool, I went to Southampton and had the procedure there. The treatment was minimally invasive and relatively pain free apart from a little temporary numbness. Within three-weeks I was back out running and the scan a little later showed the cells had died. Result!

The next annual scan wasn’t such good news. It showed another recurrence, this time in the head of the pancreas. This sent a shiver down my spine as I know what a difficult organ this is to operate on. Fortunately, Liverpool has one of the best pancreatic centres in the UK and it was here that I had the massive ‘Whipple Procedure’ (known as a pancreaticoduodenectomy) to remove the tumour along with the head of pancreas, gallbladder and duodenum. I was then ‘replumbed’. This operation is one of the most technically demanding surgeries there is and I was lucky to be in the hands of the excellent surgeon, Mr Declan Dunne.

I spent eleven-nights in hospital in total; lots of pain and discomfort. This took longer than the nephrectomy to get over, left me needing to take digestive enzymes with meals and a discomfort and nausea that’ll be with me forever. I was grateful though that I’d been cured again. The next scans were clear and it was agreed I’d be on lifelong surveillance.

Unfortunately, it wasn’t long though until the relentless monster reared its ugly head again. The scan from December 2021 revealed a tiny lung nodule so a referral to a chest specialist for surgery was arranged. Then, it all started to get messy! A further phone appointment confirmed a further recurrence in the kidney so an appointment with an ‘Interventional Radiologist’ (IR) was arranged for further ablation for which I was put on the waiting list. Some weeks later I had the lung nodule removed laparoscopically, a procedure that, thankfully, I got over very quickly.

Time then dragged and upon chasing the IR appointment I received another call to say there was also an area of concern in the pancreas! Wow.

It was obvious to me my case had been back and forth to MDT and that it needed repeated viewings. The recommendation was now to remove the remainder of the pancreas but that would leave me diabetic. I refused and instead asked for nanoknife to the pancreas and ablation to the kidney and the Interventional Radiologist, Dr. Jonathan Evans agreed to perform this.

On 1st June 2022, I’m sedated, awaiting the procedure and I’m told my procedure is cancelled as there isn’t a bed available for an overnight stay! Dr Evans advised me to have a scan there-and-then so they had an up to date one. Shortly after, he came back and said that the pancreas and kidney tumours were the same size as in the December scan but several small lesions were present in the liver.

He promptly discussed me at MDT and the following month I had an oncology appointment at Clatterbridge Cancer Centre. My disease was at the stage now where to continue to ablate or operate was futile and systemic therapy was recommended. Different drug options were discussed. The oncologist arranged a further scan and I then commenced on combination therapy of Avelumab and Axitinib on 6 October.

The infusion of avelumab left me a little tired the first time and the axitinib tablets were ok for about five-weeks when they affected my taste buds to the extent I stopped enjoying food. My joints were also very stiff. My specialist nurse advised to have a week off them and then recommence on a lower dose. Since then, I’ve had few problems but more importantly I had my first scan since starting the treatment.

Quite astonishingly, the pancreatic lesion is no longer visible and the most notable area of concern in the liver has shrunk from 23mm to 15mm. The kidney was of normal appearance. What a good start! 

Currently, I have the infusion every two weeks and tablets twice a day and I also travel 100-miles for the treatment but it’s a small price to pay if the treatment continues to work.

I have to add in that I’d be lost without my partner, Kaye who has been at my side to support me throughout all of this. Words cannot say how I feel about her. Thank you is simply not enough, but… thank you.

The importance of the work and support Kidney Cancer UK give, and their annual Kidney Cancer Awareness Week which kicks off on the 6th February, cannot be underestimated. If you, or anyone you know, shows any of the signs of kidney cancer – a pain in the side or flank, signs of blood in their pee, extreme tiredness- convince them to see their doctor as soon as possible. It may well be nothing but if it is kidney cancer and its caught early, the chances of a full recovery are massively increased, so don’t delay. Use Kidney Cancer Awareness Week to start a conversation about kidney cancer, let’s get people talking.

Whatever stage of the journey you’re at, never give up. There are so many treatment options out there now.

Good luck!

Mike