Origin
The story of my kidney cancer started in the summer of 2018 when my pee looked red. I went to my GP who arranged for tests at St Cross Hospital in Rugby. An ultrasound examination revealed a mass on my left kidney. Then CT scans revealed that the the whole kidney had to come out and that I had 4 small metastases in my lungs. I was put in the care of consultant urologist Mr Anthony Blacker. A slot unexpectedly came up in his list and he expertly removed the kidney on 10 October 2018 at University Hospital, Coventry. He made just two small holes, one for the camera, the other for instruments, and a neat central incision below my belly button to get the kidney out. The scars hardly show.
I stayed under Mr Blacker’s care for a few months with CT scans every 3 months. They showed that the lung metastases were very slow growing. Nothing to worry about there. As Mr Blacker cheerfully told me, I would likely die of something else.
Transfer to Oncology
I was then referred to the oncology department at University Hospital, Coventry. There I was under the care of consultant oncologist Dr Yakhub Khan. CT scans every 3 months continued to show slow growth of the lung tumours. It was deemed that treatment was unnecessary. Everything seemed fine.
From the summer of 2020 onwards with lockdowns and pandemic scares, I was sleeping very badly and feeling like a zombie. So at the end of the year, when my balance was occasionally unsteady and when I occasionally had problems saying some words, I put it down to lack of sleep.
I did ask a GP about it and he thought there was nothing untoward. Come March 2021 I was no better and my partner Lyn told me I just had to call the doctor and get an appointment to see a neurologist. On March 5th I spoke to GP Dr Samantha Chambers who straight away arranged for me to go to the Medical Diagnostics Unit at the University Hospital, Walsgrave, Coventry. They did a CT scan of my head and told me I had a tumour in my brain and they straight away gave me some steroids to reduce the oedema around it and reduce pressure.
I was admitted to hospital for a few days for more tests including an MRI scan of my head to get a more detailed picture. Dr Khan decided to put me on Tivozanib, a drug that inhibits the growth of new blood vessels and is used with kidney cancer because growing new blood vessels to feed itself is what it does. The tumour was(is) in my brain stem where physical surgery is out of the question because of the enormous damage it would do
Stereotactic Radio Surgery
The optimum treatment would normally be Stereotactic Radio Surgery (SRS) in which powerful beams of radiation are directed at the tumour from a whole range of different directions. That way the tumour gets all the radiation but the surrounding areas of brain get less. There was some doubt as to whether my tumour was suitable for treatment this way because it was in such a critical area. Any damage to the brain stem could seriously impair me.
Queen Elizabeth Hospital, Birmingham is the regional centre of expertise for SRS and Dr Khan had my scans sent there so that they could assess the feasibility of treating me with SRS. The answer came back in the affirmative. I was given an appointment with Dr Sara Meade in Birmingham on 18th March 2021.
Things moved quickly. First they made me a mask which was a big metal U shape with plastic mesh attached. I lay on my back with my head on a block as on the SRS table; the technician warmed the plastic to soften it, then put it over my head and fastened it down, then formed the plastic mesh to the contours of my face and head so that when it was cold and hard my head would be unable to move more than a minute amount. This was necessary so that the radiation would hit the right spot. Dr Meade determined that the optimum would be 3 treatments on consecutive days. I was scheduled for the last 3 days of March 2021.
The radiotherapy left me feeling pretty tired and limp for a few weeks but I was otherwise fine. I was initially on steroids to minimise swelling and then gradually weaned off them over a period of a few weeks.
NHS
I must say that the performance of the NHS has been absolutely first class throughout. From the surgery on my kidney in Coventry, through the oncological care in Coventry and through the SRS at Birmingham. Of particular note was that my brain stem tumour was diagnosed on 5th March and treated with Stereotactic Radio Surgery by the end of the month.
Scare
I got a bit of a scare in April when I was absolutely gasping for breath and still felt I was suffocating. So off to A&E in Coventry where a scan revealed a blood clot in my lungs. So I was admitted, put on oxygen and given blood thinners. I was told that blood clots were a risk with cancer and I was prescribed Apixaban with the expectation that I would need to take it permanently although the dose was reduced after 6 months. There might be another explanation in that I had an Astra Zeneca covid shot in January and blood clots were soon to be discovered to be an associated risk. Unaware of that, I did have my second covid shot in May after I had weaned off steroids..
Good News
Anyway, the good news is that my brain stem tumour reduced in size for over a year and I felt just fine. In October 2020 I suffered a severe groin pain when standing or walking. Groin pain is listed as a potential side effect of Tivozanib, so I went on half dose for a month and the pain went away. Then I went back on the normal dose. Then again in April 2021 the groin pain came back and since there was some doubt whether Tivozanib crossed the blood/brain barrier to reduce my brain tumour I was taken off Tivozanib pending resolution of the pain. It didn’t go away in one month, or two, or three. Then it went away for a bit, then came back and is with me to a lesser extent as I write this in January 2023.
Not So Good News
A scan in the summer of 2022 showed my brain tumour was the same as 3 months earlier, then a scan in October 2022 showed that it was growing again. So my application for the return of my driving licence was rejected.
Next Steps
Dr Khan discussed treatment options. More SRS was out of the question because it would fry my brain. I could have lower dose more general radiation, but I didn’t get the feeling that would do me much good. It would make me feel bad and might slightly reduce the tumour, but after the resumption of growth after SRS I wasn’t convinced. I decided with Dr Khan to go with a combined drug therapy of Everolimus and Lenvatinib, both of which contain tumour growth inhibitor and angiogenesis (blood vessel growth) inhibitor. At the time of writing I haven’t had another scan to see how things are going.
See my Blog for updates