I have not been on this site for 18 months or so, essentially since I made my decision to go with PROTON beam therapy, rather than the NHS offered PHOTON treatment. Going privately in London was, for me, the only reasonable offering. A 3 page NHS patient consent form listing all the possible (likely) side effects simply did not cut it.
Buying and reading the Robert Marckini Book (Title: You can beat Prostate Cancer and you don’t need surgery to do it) really set me on the path to logical and careful consideration of the options available, not just the NHS offering. Proton therapy was a logical option for me, maximising benefits and minimising deficits, including an apparent reduction in the chances for reoccurrence. I was also in the lucky position of talking to guys in the USA who have had Proton therapy (do you know because it is done on an outpatient basis Medicare pays for it if you are over the qualifying age!)
Equally a reduction from 37 NHS treatments to 20 Proton treatments I felt to be beneficial, as well as the Space-Oar Insertion, designed to better protect my rectum from the treatment.
I am now 17 months post the conclusion of my 20 intimate meetings with the beast (this machine is huge – think the astronaut running track in the film 2001 -and 4 storeys below ground) and 9 months from the end of my ADT therapy.
To briefly recap, I started all this with a PSA score above 60 and a Gleason score of 7. (4+3). For many months the NHS refused any MRI scans but alternatives confirmed a disease spread beyond the capsule into the Seminal Vesicles and a, non evidentially based, view that the pelvic nodes were at risk. Bones were not considered at risk.
I remain in contact with each of my oncologists (NHS and Private) mainly to the extent of updating them on my PSA results, although my NHS consultant is also keen to understand the Proton technology, particularly the newly released kit, in the USA, providing Proton benefit for little more than Photon setup cost using a similarly sized physical environment.
ADT reduced my levels hugely, to the extent that shortly before the start of my Proton therapy in January last year an eventual MRI scan result showed ‘no radiological evidence of cancer’
Since treatment I have arranged quarterly PSA tests. Essentially the results showed very low levels of the antigen, starting after radiation at 0.01, rising to 0.04 in January and now at 0.06 (all ug/L)
I have no side effects. My testosterone levels are rising – I can now get an erection and my dearly beloved becomes increasingly desirable.
I am proud of making the decisions I did, thinking everything through in conjunction with my family. I was apparently the first in the UK to have the range of radiation (Gland, Seminal Vesicles and Pelvic Nodes) and since my treatment I have had opportunities to talk to others looking to undergo Proton treatment. I have also done some radio broadcasting, mainly to increase awareness on how to think your way to a solution likely to be better for you.
I am lucky that I was able to take a particular pathway. I am now coming on in years and I want to live the rest of my life doing as I choose without concern for bodily limitations (other than those brought on by age!) I take the view the cancer was an episode in my life not an excuse to pull in my horizons, sit on the front porch and gaze at the scenery, whilst maintaining a close relationship with the indoor plumbing.
Happy to discuss Proton Therapy, its costs and gains with anyone
