Long post alert!
Having recently completed a 20-fraction course of radiotherapy, I thought it may be helpful to others, who find themselves in a similar position to me, if I detailed my (almost entirely) good experiences.
Background: male, 57 at diagnosis, Gleason 3+4 = 7. Prostate vol. 30ml, density 0.17, PSA 5.2. At biopsy, 10 cores involved, 25% positive.
My father was diagnosed with metastatic prostate cancer at age 84 in late 2017, having suffered absolutely no symptoms bar an increasingly frequent need to urinate overnight.
Following an unrelated (arthritis) visit to my GP in 2018, my GP suggested periodic examinations and blood tests “just to be safe”.
By late 2020, my PSA had risen from 3.2 to 5.2 in about 18 months and examinations revealed an enlarged, but smooth, prostate. I was having no symptoms of any sort, not even needing to pee frequently/urgently or, routinely, at night.
Continuing the “to be safe” theme, I was sent for an MRI in October 2020 (“nothing to worry about, but…”) followed by a biopsy early in December 2020.
On New Years Eve (Happy New Year!) I received a ‘phone call confirming prostate cancer.
Given my age, general good health and fitness, and relatively early diagnosis, I opted for a period of active surveillance whilst considering my options. By early 2022 my PSA had risen to 8.2 and I was finding a need to pee more frequently, especially overnight, and experiencing a noticeably reduced flow rate.
Not fancying the invasive nature of surgery, my preferred treatment was low-dose rate brachytherapy but, due to my reduced flow, this was ruled out in February. My second choice was therefore radiotherapy, to be carried out at Bristol Cancer Institute, part of BRI.
The planning CT scan, at 8.30am one day early in May, was aborted due to excessive rectal gas and rebooked for three days later. Now, it happens that I very rarely eat breakfast, preferring to eat only twice a day at about midday and 7-8pm, so at 8.30am my stomach is like a compost heap and very active, especially with a diet that is probably 80% vegetable-based.
For the second attempt, I was able to get an early afternoon appointment instead and this fitted neatly with my well established bowel habits. This CT presented no problems at all, and, fortunately, all of my radiotherapy appointments were scheduled for a very similar time.
To my mind, this makes enormous good sense - to fit the treatment around long-established habits, rather than enforce an unnatural change of routine with the inevitable unpredictable consequences. I did discuss this with the nurse specialists, but there is, apparently, no clinical evidence of any benefit to this approach. That said, they did humour me, and all of my treatment times were identical and within 30 minutes of the time of my prior successful CT scan.
For the duration of the treatment I stuck to the same breakfast diet, eaten at exactly the same time of day, and avoided excessive amounts of those foodstuffs known to cause problems (leafy greens, onions, alcohol, etc). I didn’t avoid these things entirely, but took an ‘everything in moderation’ approach. Interestingly, BRI provided almost no dietary advice: when questioned, they said that their approach was that it was probably best to maintain as near-normal a diet and habits as possible - which makes their bemusement at my request for appointments that fitted my bowel habits somewhat odd.
Come the treatment itself, I stuck as religiously as possibly to their guidance: use of micro-enema, fluid intake, etc. Timing was a challenge as I live a 40 minute (on a bad day) drive-and-walk from the hospital, so every appointment took almost three hours in total making work challenging to say the least.
Yes, it’s all a bit undignified and physically uncomfortable, but I can’t praise the radiography staff highly enough and it went off without a hitch. No side effects to the treatment whatsoever.
The one and only issue I have had is with the pre-treatment dose of Decapeptyl given three weeks prior to the first session. For 10-14 days I experienced no side effects to this but, since then, have had an intense hot flush every 40 minutes, night and day. Seriously, I could set my watch by these, so regular and predictable are they. So far, they’ve gone on for 14 weeks. My longest period of unbroken sleep has been 75 minutes and I’m getting, I reckon, a cumulative total of about 3-4 hours sleep every night. A regularly reported side effect of the radiotherapy seems to be tiredness: I can’t really comment on that as I was knackered through sleep deprivation.
I was due, according to standard treatments plans, a second hormone injection about 3 weeks ago but, due to the side effects of the first, my oncologist agreed knock this on the head.
After a blood test last week, I had a call from the oncologist today. My PSA has fallen to an unrecordably low level and, I am advised, I’m highly unlikely ever to need further treatment for prostate cancer. In addition, she is prescribing a low dose of a HRT drug to counter the hot flushes as it could take a further 2+ months for the initial hormone jab to wear-off.
Obviously these things are very subjective and highly individual but, based on my experience, I would place radiotherapy very close to the top of the list of treatment options.
