Disease and treatment update

I thought I might give an update to my journey and its likely outcome.

For the last few months I have been heavily engaged with the NHS in trying to get access to my Patient records, the minutes of the several MDT meetings and, most importantly my scans/XRays, both relating to my Prostate cancer and to the visibility of the epicardial pacing wires left in me after my 2018 elective heart surgery.

I have also been engaged in getting second opinions about my biopsy results and the radiation treatment proposed by the NHS.

More recently I have been getting some of the errors and omissions in my patient records cleared away. Several of these are significant and it seems, presently likely, will affect the accuracy of the Radiation beam placement (lack of pre treatment MRI). PALS have given up, suggesting I upgrade the issues to a complaint. I have not done this – in my world you do not piss of the guy twiddling the knobs affecting your treatment by complaining about what appears to be a dick swinging contest between different departments.

To me, of much greater concern is that the MDT minutes come to no conclusion whatsoever about the detail of my proposed radiation treatment. All they conclude is Hormone Therapy and Radiation treatment. There is nothing beyond that – nada! So who decides what and for how long the HT should last? And who decides the radiation treatment period and dosages.

Obviously it is not left to each individual oncologist to make up the treatment regime. My oncologist and I have had many discussions about this, and to be fair, he accepts my point of view.

Equally obviously, somewhere in the background, there is a protocol which details what treatment follows what diagnosis. But does that protocol allow modifications, or is is completely fixed? Does it take into account changes between initial diagnosis and the state/size and condition of the disease at the point of treatment (and allow treatment adjustment to accommodate these changes). And how is and on what basis is prophylactic radiation calculated?

So I have asked for several months now to see this protocol, to allow me to better understand the subtlety of what is on offer and to better engage with the radiation process to which I am likely to become subject.

In simple terms I need to know, and to understand what the radiologists are going to do to me and exactly why they propose doing it. Again PALS have run out of steam and I am left being told I must soon sign a 2 page 'you will probably have real problems arising from the poison we are going to spray on you' but sign this and we can get on with irradiating your body' form.

Throughout all this time, since my cancer was discovered late in 2023, I have been exploring alternative remedies, and have come firmly to the conclusion that Proton therapy is the way for me to go. I am helped in this decision by Bob Marckini, an engineer in the US who received Proton therapy some 24 years ago and has been fine ever since (no long term side effects) and the group of prostate cancer sufferers who have been similarly benefited over the years (over 10,000 now)

I initially looked at treatment abroad, but have now decided to be treated in London, with some 20 radiation sessions. Space-Oar is a part of the process to help minimise unwanted radiation. The information is free flowing and I am very reassured by where I now am in all this.

Since I started this update, I have committed to Proton radiation at UCLH in London. My treatment is through a company Proton International London Limited, who have bought into a share of the proton equipment used to treat youngsters, on the NHS, who have difficult to treat cancers. There is significant cost involved for me and we are selling our home to fund my treatment.

The really good news for me is that the private Prostate MRI scan, I eventually went for last October, revealed that the HT treatment had worked really well and there was no radiological evidence of cancer.

I have also had the operation to insert the Space-Oar to separate the prostate from the rectum by a centimetre or so, significantly reducing radiation impact on the latter. Proton treatment is already significantly less damaging to healthy tissue, and the patient consent form contains far fewer health warnings, so my confidence is high.

I go for my planning meeting later this week and start treatment (20 sessions over 4 weeks) about 10 days later. My meeting gives me a couple of CT and MRI scans and sets me up for the treatment. I also get to meet up with my oncologist and the various scientists/radiologists/magicians who have to do the job on me.

My NHS Oncologist, is accepting of my decision not to continue on the NHS (it releases treatment space to someone else on his list) and is keeping in touch, being fascinated by an alternative therapy, its mechanisms, processes and results.

That is it for the moment but I will report in again once it is all over and I am better positioned to get on with my life (Knee replacement and, far more important, France in July for the Le Mans Classic event!) It will also be a time for me to start to give back to my wife Patty, who really is the star here. Her support and encouragement has kept me focussed on perspective, research, technical stuff, risks and rewards – all the practical stuff. But more significantly, she has shared the journey with me, boosted my psyche, and is just amazing, loving and caring.