My Journey
I present here a summary of my personal journey through the system.
Diagnosis
Late 2016 – I see my GP and ask for a PSA test. He tells me it is a waste of time, there being no obvious signs that I had Prostate Cancer. I accepted this but it was a mistake not to be tested.
17/01/2018 – I see my GP again and ask for a PSA test. This time I expect him to tell me it’s a waste of time so I ask him “Well what test do I ask for then?” He relents and provides me with the test.
31/01/2018 – The result is 7.6 but the GP doesn’t think there is any cause for alarm. I do think there is and “push” him to put me into the system. An initial DRE (Digital Rectal Examination) by the GP did not indicate any growth to be present.
21/02/2018 – First meeting in Urology. At this visit, a DRE did indicate a growth to be present. As my GP did not find this I observe caution in trusting a DRE unless it is positive.
21/03/2018 – mpMRI Scan
10/04/2018 – Biopsy, but informed – as a result of the mpMRI scan – that I am “seriously ill with prostate cancer” at this point.
11/04/2018 – FIRST email from the holistic specialist who has been informed about my situation.
18/04/2018 – GP appointment at which I discover my staging is T3b. I tell the holistic specialist and “within hours” have my “full story” including my journey details. He predicted everything correctly at this point with one exception and that is that I was not given a PET/CT (Theranostics) Scan. Consequently, from here on I was very calm and comfortable at every point in the journey.
02/05/2018 – Urology Clinic at which my Gleason Scores – the top one being 9 – are revealed and a Bone Scan recommended (This is where I should have been recommended a PET/CT PSMA Ga68 Scan). Pharmacy script for hormone therapy issued. Radiotherapy is recommended as my treatment modality. Prior to attending this clinic I had asked the specialist how I should feel if I had a Gleason Score of 10. We “agreed” that as the whole of the cancer would be wiped out by the treatment “it didn’t really matter”.
03/05/2018 – FIRST hormone tablet taken. This is the moment that things are being “arrested” so GOOD NEWS! – A QUESTION! – The T3b diagnosis would probably have been known within a day or so from the MRI Scan – i.e. 22nd March – so why couldn’t I have been put on hormone therapy at this moment? But back to the present, at this point my thought process was that “as the hormone therapy arrests the disease, every day I have hormone therapy is another day added to my life”!
17/05/2018 – First 4 weekly hormone injection. (Tablets still to run for one further week)
25/05/2018 – Bone Scan (I phoned for the result about one week later) It is “all clear” (apart from normal “wear and tear”)
15/06/2018 – Second hormone injection
18/06/2018 – Initial clinic with Oncology Department. A very wide-ranging discussion of my situation took place at this clinic. My wife was present and we both were very impressed by this visit to the Oncology Department.
12/07/2018 – Third hormone injection
26/07/2018 – Gold Seed Fiducial markers inserted into prostate. These are used to provide “millimetre” accuracy both for the planning process and the subsequent treatment. The treatment Linear Accelerator I was to be treated on was one of the most up to date machines in the world.
Treatment
03/08/2018 – CT Scan for radiotherapy treatment planning.
09/08/2018 – Fourth hormone injection.
22/08/2018 – First radiotherapy fraction. Within SECONDS of being on the couch I heard one radiographer say “EXCELLENT”. I think this meant that EVERYTHING lined up exactly (from the CT Scan) “first time”! (WELL DONE!) Note that this is some months after starting hormone therapy. This is because the hormone therapy not only arrests the disease but also it causes some shrinkage in the tumour. This latter means that treatment can be effected with smaller beams resulting in less damage to healthy tissues.
06/09/2018 – First 12 week hormone depot injection.
18/09/2018 – Last fraction!
Follow-up
29/11/2018 – 12 week hormone depot injection.
30/11/2018 – Result of first PSA test since Radiotherapy treatment is <0.1. A wonderful moment.
07/01/2019 – First follow-up clinic. Checks of PSA changed from 3 month intervals to 6 month ones due to the low PSA result. Next check in July 2019.
21/02/2019 – 12 week hormone depot injection.
16/05/2019 – 12 week hormone depot injection.
19/07/2019 – PSA test – <0.1
29/07/2019 – Clinic with Oncologist. All seems well. Next clinic appointment, January 2020.
08/08/2019 – 12 week hormone depot injection.
04/11/2019 – 12 week hormone depot injection.
09/01/2020 – PSA test – <0.1
20/01/2020 – Clinic with Oncologist. Asked for a small blood loss from back passage to be looked in to – it is not serious and I have had it for some months now with the Oncologist saying that it needn’t be “repaired”. I cover this in more detail on my Flexible Sigmoidoscopy page.
27/01/2020 – 12 week hormone depot injection.
20/04/2020 – 12 week hormone depot injection.
13/07/2020 – FINAL 12 week hormone depot injection
16/07/2020 – PSA test – <0.1; Oncology Clinic carried out by telephone (Due to Covid19 constraints). Nothing to report.
20/10/2020 – A Flexible Sigmoidoscopy was performed to ascertain if the small amount of bleeding from my back passage is due to radiation damage. It was found to be so, and will be repaired in a future procedure.
14/01/2021 – 6 monthly PSA – <0.1 as it has been. This is good news as I have now been off my Hormone Therapy [ADT] for just over 3 months. I have had some withdrawal symptoms coming off my ADT. Two are worth recording. About a month after the end of my ADT my physical strength made a significant upwards move, as did my mind. I am still having the odd “hot flash” but not at the level of when I was on the ADT full time.
11/06/2021 – 6 monthly PSA – <0.1; Oncology clinic was a form filling exercise; received by post and returned by post.
07/07/2021 – Letter received indicating that things are satisfactory and will be reviewed in January 2022.
09/07/2021 – I had an appointment to have a second Sigmoidoscopy and to have my rectum repaired. But after discussion with the Consultant in which some downsides were revealed, I decided not to go ahead with the repair, but to leaves things as they are. See the Sigmoidoscopy page for more details.
October 2021 – The passing of blood from my back passage has somewhat increased but is still “in control”. I decided to stop using “Dulcosoft” as I’m now believing that it does not make any real difference to my blood loss.
November 2021 – Have now been off ADT for over a year and there are some changes in my wellbeing. Firstly I’m feeling much stronger – my muscle tone was definitely compromised when on ADT. I’m also able to have a “soft” erection and experience a climax. But there is no sign of any ejaculate as yet.
16/12/2021 – PSA test – <0.1; Received a form in the post to record my current status, and after sending it back received an “all clear” letter with the next 6 month test in July 2022.
01/07/2022 – PSA test – <0.1; Over 4 years since diagnosis, now.
22/12/2022 – PSA test result – <0.1
10/04/2023 – FIVE years since diagnosis and with Prostate Cancer undetectable in my body. An amazing and welcome place to be in.
20/07/2023 – PSA test result – <0.1
24/01/2024 – PSA test result – <0.1
Comments/ Information
Overall, then, my journey to date has been – PSA -> mpMRI -> Biopsy -> Start of ADT -> Bone Scan -> EBRT -> ADT (now complete)
Where –
ADT is Androgen Deprivation Therapy – or “hormone” therapy,
mpMRI is Multiparametric MRI which is very sensitive to the presence of Prostate Cancer, and
EBRT is External Beam Radiotherapy.
Theranostics is a relatively new diagnosis and treatment technology that is very sensitive to metastatic disease.