In November 2017, I’d just started a new job, and after a busy weekend working on a stand at the NEC I had some left side/groin pain – something I’d had earlier in the year but was passed off as ‘one of those things’ by my GP after a urine test. But this time it hurt like nothing I’d experienced, and pain killers were not touching it. My GP sent us to the day assessment unit at Northampton General Hospital for a scan – maybe kidney stones? A long and painful day and a CT scan revealed ‘something’ on my left kidney. A contrast scan the next day revealed a 7 cm tumour and a lot of affected lymph nodes. All over me. I was left in no doubt that this was very, very bad. Some of the registrars just didn’t seem to be able to relay this with any empathy – thank heavens for a practical consultant and good nursing staff!
I saw a renal surgeon fairly promptly. He made it very clear that this wasn’t curable, but thought that removing the kidney and tumour would give me the best outcome possible. It was then a nightmare of tests, delays and a biopsy (that proved pointless) before I was finally offered surgery in February 2018. Mr Potter is a great surgeon and managed a laparoscopic nephrectomy, even though it took six hours – not that I noticed but scary for my family.
The first couple of days were miserable afterwards but getting home on the third day was a big help. I did manage to return to my desk job (and short drive) after 4 weeks, which is a little unusual, but it does depend so much on your health and fitness. At the end of March my surgeon confirmed type 1 papillary RCC, PT3A, Fuhrman grade 2, and that this was a less common variant.
I saw the Head of Oncology at Northampton after another scan in April and was unimpressed! I was offered sunitinib (as there was progression on the scan in the lymph nodes) but with the clear impression he didn’t think it was likely to work. Trials were mentioned but they only seemed to know about PRISM which wasn’t available for papillary patients. I was promised by the Macmillan nurse that she’d find out about other trials, but you do learn very fast that if you don’t fit the clinical trial criteria, the NHS system can be distinctly unhelpful. She certainly was.
With some of my own research and some support from KCSN, I tracked down a relatively new TKI drug that looked promising for papillary RCC – savolitinib – and then found that there was one trial in the UK that incorporated it (along with MEDI4736, an immunotherapy drug) called CALYPSO. Armed with this information I got a quick referral from Northampton to Professor Patel at Nottingham.
I started the trial at the end of May and to date (August 2019) it has worked out amazingly for me. After a big initial reduction, things have been stable/slightly reducing on every 8-week scan. Side effects really haven’t been a problem (some itching and swollen extremities) and I worked all the way to the end of my contract without needing time off apart from the review/treatment every 4 weeks. Hats off to my employer on this count – my colleagues were incredibly supportive, and my managers allowed me all the time I needed for appointments.
It has been incredibly difficult emotionally for me and my family, and it has taken me quite a long time to accept what is happening and avoid bursting into tears when discussing any future event! I’m so grateful for the trial, which has allowed me to reach some equilibrium and enjoy life again. We’ve been able to retire gracefully and make some plans for the immediate future that are really exciting. I only wish more could have the opportunity – although my trail is still running (I will continue to be treated while I stay stable), it stopped recruiting papillary patients just after I started.
What I’ve learned is how important it is to work with a medical team you can trust and getting surgery/treatment underway as soon as you can. Initially, you really do have to make a nuisance of yourself, keep notes on everything that’s said or promised. Use the hospital PALS if you need to – don’t just accept what you are told if you don’t think it’s right. We’re so vulnerable and trusting at this point, but not every medic is a saint with a good memory! Once you and your treatment team understand each other, things get so much better. I never thought I’d ever consider myself lucky a year ago, but I can assure you I do!
I follow the KCSN group on Facebook and contribute when I can – I’m particularly conscious of that initial hammer blow and try to make sure that the newly diagnosed know that there is hope and support as soon as they post. I know lots of others try to do this as well and I know from personal experience how much this means. As I have something of an academic background, I do keep tabs on what’s going on in the field and try to share whenever I think it is appropriate. Sometimes you do need to take a break though – it can be harmful to get upset by things you can’t control.
My final advice is to get a motorcycle. OK, maybe this is not for everybody, but, seriously, find something that allows you to disconnect from the world and focus on physically doing something for a while: playing music; reading; drawing; yoga; puzzles – stress makes everything so much worse. ‘Mindfulness’ is a posh word, but it works.