Terror. Ecstasy. Fight. Denial. Flight. Failure. Forgiveness. Reconciliation. Hope. Love. Peace – Death.
Just when you thought it was over? It had only just begun
So far I had managed to channel my Terror and (3 seconds of) Ecstasy when hearing I had cancer towards life. My fight to live. This changed the second I heard No Cure. I was now in a different kind of fight. The fight to extend life. I set my goals, worked out my things, to take care of some big some small and began fighting.
I think I enjoy a fight? No matter what the fight? The fight.
Depends on the fight of course? Can’t say I ‘enjoy’ fighting for my fucking life but I do enjoy fighting? Or is it the winning I enjoy or just ‘the NOT’ losing?
With cancer the biggest fight is with yourself. To stay sane, to maintain hope, to be positive, to be and keep, (otherwise), healthy and most importantly, to keep on being yourself, John, and not to become John with cancer. I am going to die but I would like to die with hope, love and peace and not just for myself.
‘If you are looking for a fight you will always find one’?
A period of inactivity. A little over twelve months watchful waiting with tri-monthly PSA testing (monitoring). Scanxiety. Scanxiety. Scanxiety. Two canceled (rescheduled) appointments. Busy Mr Weston.
February 2018 PSA 0.23 (the threshold had been reached). My next (twice rescheduled) appointment wasn’t for several months. At this appointment a revised (PSA 0.50) scan threshold was imposed. Based upon my PSA profile my PSA at the next appointment would be 0.50, double the original scan threshold.
The revised PSA target was reached 7th May 2019 (0.55) and during my clinic appointment 15th May 2019 Mr Weston advised that he would make the arrangements for the promised doozy PSMA scan, I would receive an appointment from the Liverpool Nuclear Medicine Department within 2-3 weeks. Better late than never.
June came and went no appointment. No explanation. No contact. plenty of terror.
Broken promises. Mine came in the form of treatment, or to be specific none treatment. Mister Weston, where’s my ‘super-scan’ dude? The agreed PSA 0.20 milestone had long passed, and the revised (0.50), I had been waiting patiently for 12 months for a PSMA PET scan.
I requested an appointment with Mr Weston for a detailed (first-hand) explanation and to discuss the implications as my further treatment was meant to coincide (be informed by) s PSMA scan. I was advised that he had no availability until January 2020 earliest.
We had just returned from an amazing trip to Vietnam and Cambodia and I had survived another amazing Glastonbury! I had a morning Dermatology (psoriasis) appointment before heading off to the funeral of a friend, who had died of prostate cancer whilst we were away.
Whilst at Broadgreen Hospital (Dermatology) I called into the urology clinic to inquire about the scan appointment I had been told I would get 12 months ago and more recently 2 months ago. I managed to speak with Mr Weston’s secretary via reception, on the phone in the clinic. She rang the Liverpool nuclear medicine clinic for an update. Something I had literally been unable to achieve during the past 12 months. It was confirmed that nuclear scans, in Liverpool, had been cancelled for the indeterminate future.
Fight
I rang Nuclear Medicine myself later. They repeated this information but I asked for more details why?
The original scanning machine – PSMA PET MRI scanner had been grounded by Health & Safety as they did not like the (new) position of the nuclear generator. Mayor work is currently taking place to relocate it and there is no firm schedule for completion. There is only one other machine in the UK which is in Cheltenham and largely used/booked for private bookings. This means a long waiting list for NHS patients. I would also need a referral from my consultant to even get on a list for a scan anywhere outside of where I live which would delay things even more.
They had no details to give me in regards to private services other than where these where and to confirm that any and all private services would be conditional upon a consultants referral. Ball park cost £3 to £6K. With no idea as to how quickly this could be arranged. I started contacting clinics and hospital(s) immediately.
Fight on
An alternative scanner with a slightly different format, not bad if not quite as good as Mr Weston’s doozy scanner, is available and also located in Liverpool, is operational working however, the nuclear isotope (both require an atomic injection/isotope serum) is out of stock and they don’t have a schedule for isotope delivery.
These scans are available in London and Cheltenham and they have stocks but same applies re: waiting lists and consultant referrals for both NHS and Private patients. Referral from my consultant? I had not heard anything from Mr Weston in over 12 months. Nada. Zero.
And
This ‘alternative’ scan is not as accurate as the PSMA I was promised but is the only one I’m going to get in Liverpool ergo my best/only option? During my many (long) inquiries and conversations the administration staff were a constant help, however, it is unusual to find anybody who will commit to specific dates. On one such occasion a supervisor had over heard my conversation (with a nurse) and chipped in. She was optimistic that they (Liverpool) would have the nuclear injection isotope within 8 weeks. Right smack into our Australia trip. I am finally advised that no PSMA scans will be taking place in Liverpool for patients below a PSA of 5.0!!! A huge difference from the 0.2 scan I had been promised.
I had been promised a PSMA from day one, first consultation after surgery. Once my PSA reached 0.2 it reached that 12 months ago and was adjusted to 0.5. It had hit the adjusted threshold in early May. It will be (at least) double PSA 1.0 by the time of my next rescheduled appointment in 8 weeks. It had now been now been raised to ten times that, PSA 5.0. No, this scan isn’t going to save my life? But the sooner I have it, the sooner I find out where the cancer has spread to, the sooner I can start the next phase of my treatment that WILL extend my life.
It is hugely frustrating and depressing. I honestly didn’t know what to do. I spent the weekend further exploring London (and overseas) treatment options in more detail.
A new day and another fight
Inquiries to other hospitals advised NHS PSMA scans are still taking place regularly for PSA’s below 5.0 and even as low as 0.2 and that I could be considered for such providing my consultant would refer me. Further research shows that I can have a scan in any number of facilities within 3 days without a referral (self-referred) provided I am willing to pay between £3,500 – £6,000.
I can also have a scan within two weeks in Poland and Germany for under 2,000 euros (with a referral). I can have a scan in Sydney Australia the second most expensive city on the planet for as little as $700AU less than £500 (UK).
At this time my only line of communication is via a specialist nurse and I have requested an explanation, consultation with Mr Weston to discus my further treatment. I have also requested he refer me for a scan … anywhere! To no avail.
My specialist cancer nurse had written to Dr Eswar (at Clatterbridge Hospital) for consultation for systemic radiology treatment but with no appointment as of 13/08/2019. At this point I do not have much ‘fight’ left? I am at my wits end, it is affecting my (general) health and mental health, I cannot stop thinking about it.
Reliable published data suggests that about 50% of the time a G68 PSMA PET/CT will detect even the tiniest amounts of cancer. If scanning identifies distant metastases, that would change my treatment choices.
A more usual starting point for scans for patients with similar history to myself is as low as PSA 0.05 which is 1000 times less than my final revised threshold of PSA 5.0.
I wrote to them all. UCHL (London) said they would consider me for a scan if a referral was provided. Eswar wrote to a colleague and they, the Christie in Manchester said they would perform a scan subject to availability. Manchester is twenty-five miles from Liverpool. No isotope available in Liverpool but plenty in Manchester. Postcode Treatment. Piss Poor.
Mr Weston and myself parted ways. We had done over 12 months ago but I didn’t know. He did. I was now with Dr Eswar (not a mister). Weston is surgery. Eswar is Radiology. Maybe as a diversion for the lack of scan or maybe as a matter of course I was now in the hands of the Radiology Clinic. I felt sorry for Dr Eswar, he seemed a quiet, unassuming man (unlike Weston) no superiority, no ‘god; complex…..no Mister! First time I met with him I was ‘full’ on! He hadn’t met me at a good time. Sorry. Only doing his job. Thank you.
(It was suggested that, with or without a scan,) that all roads lead to Rome? A PSMA scan might, or might not, confirm things we, partly, already know. My rising PSA confirms my cancer has advanced. We could hazard a reasonable guess as to the location. Yes a PSMA scan might confirm an exact location(s), regardless the treatment options would remain the same? Systemic, radiotherapy, hormone therapy and (eventually) last chance saloon chemotherapy.
Massive choices. Treatment options. Decisions.
I mentioned in an earlier blog that I would revisit this important area. The three (main) treatment options for prostate cancer. Surgery. Radiotherapy and Nothing. I chose surgery. One of the important reasons I chose surgery is that after surgery there was an option for radiotherapy. This is not the same if reversed. If radiotherapy is the first treatment then subsequent surgery, for example to remove the prostate and or other affected areas is no longer an option. The surrounding, organs (bowel, bladder) are severely weakened by radiotherapy and would not withstand additional, localised surgery. I chose surgery as it provides a second bit at the cherry. Should surgery not be fully successful then there was always an option for radiotherapy. Second bite. Plan B.
Systemic palliative treatment
The standard pathway for post (surgery) radical prosectomy cancer treatment is a well trodden and proven treatment plan. Surgery then post surgery biopsy confirms (or denies) advanced metastatic cancer.
Standard prostate cancer Radiotherapy treats the complete pelvis, the pelvic bed and all localised, surrounding, areas. If cancer has spread to anywhere within, good. If it has not then bad. Nothing else has changed other than permanent radioactive collateral damage to the bowel, bladder and other surrounding nerves, tissues and organs. I was told there is a fifty percent chance of a successful outcome.
There are other types of radiotherapy. High intensity focused radiotherapy. This treatment will ‘focus’ on an infected area only. No (less) collateral damage. Systemic radiotherapy is completed over a period of 6-7 weeks with a further 2 weeks follow up. 8 weeks 5 days per week in a hospital (out patient) with a 50-50 chance of success. Focused (SABR) radiotherapy is completed in one single week, 3 days (sessions), out patient. No follow up. No brainer?
Focused radiotherapy cannot happen without a series of scans. Including a PSMA scan to guide the proton beam (if it misses it is bad). In terms of the actual numbers who have received early scans there is still only small data. However, the most thorough and recent study (November 2018), with 1000 patents http://www.healthtechnology.wales/wp-content/uploads/2019/01/EAR005-PSMA-PET-CT.pdf indicates that some men with a small number PSA (5 or less) of distant metastases may benefit from spot radiation to the lesions. With spot radiation, men have been able to delay systemic treatments such as hormone blockade or chemotherapy. This delay improves quality of life. A minority of men have achieved durable, longer term PSA remissions.
At this time proton beam radiotherapy was not being widely used in prostate cancer treatment. It is more common in intricate (child) brain cancer surgery.
I could feel another fight emerging?
First things first
A scan
New Skills – Master Forger – Desperate Times require Desperate Means
Thanks for reading.
Peace.
Dying to Live 