"Von Hippel-Lindau syndrome (VHL) ground breaking treatment"

In 1996 I lost part of my right kidney to a tumour resulting in one week in hospital and three months off work.

In 2001 I lost the rest of my right kidney to another tumour resulting in 5 days in hospital and four weeks of work (getting used to operations by now). My forward-thinking specialist/surgeon Mr Joyce asked if I would be willing to try a relatively new procedure in the UK when another tumour appeared on my left kidney in 2007 and from there a miraculous journey would start.

Enter Doctor Wah and her team, a kidney and life saving intervention for me, because not only did they successfully remove a tumour from my remaining kidney in 2008 they spotted a tumour on my pancreas which only the year before my sister had died from, she was in her thirties.

Using Radio Frequency Ablation, which in easy to understand terms is the use of needles guided by MRI positioned around the tumour then hooked up to a generator then using heat the tumour is destroyed. No big nasty scars one night in hospital and within two weeks I was back at work full time (I was younger then).

The amount of kidney that is lost this way is well under a cm and my kidney function was back to normal within a few days. I cannot express what a game changer this was for me and my family, no long recovery, reduced mental stress and back to the husband and father I need to be. There is nothing worse than feeling everybody else needs to look after you and that I cannot do my job.

Over the next few years I've had (I like to keep the team busy)

2016 Cryoablation (extreme cold instead of heat) to remove another tumour.

2018 Cryoablation yes another tumour.

2019 Cryoablation you guessed it another tumour.

2023 Cryoablation this time 2 tumours removed at the end of January

Total 6 tumours removed from my left kidney and the function is still good

and minimum loss of kidney tissue although it might take me 3-4 weeks to be back fully this time (I'm getting a bit older).

I am very lucky that because of my condition, Von Hippel-Lindau syndrome (VHL), I am regularly scanned for the growth of new tumours, as was my sister, who had five tumours removed by conventional surgery and lost both kidneys. This is not a fault of the surgeons but unfortunately this treatment came a few years too late for her, but we can see from the above how ground breaking this treatment and others like it are to us all.

In summery I would like to push for Ablation in any of its forms to become the first choice treatment for kidney tumours and any other areas it can be used in. Not all people grow tumours like I do but, and here is the big but, the NHS need to make this the number one choice as no surgeon knows how many tumours you will get in your life time, you might be lucky and its a one off and a easy operation, but what if you're not?

What if you cannot cope with the stress and the scars of major surgery or the loss of a kidney before you are moved over to ablation. I think the money alone it would save the NHS must be recognised as soon as possible,  not even taking into account how much easier it is on us the patient.

Once again I would like to thank the Ablation Team and all the help from those  at St James Hospital Leeds for keeping me going with such dedication, expertise and kindness.

Kind Regards