“in the dark days and nights of active surveillance, I struggled to believe life to be worth living”
My name is Perry Letcher. I am now 58 years old, writing this in May 2020. 5’9 ½, 11 stone 6 and an active sportsman – Cycling and running between 7-12 hours a week, considerably more when cycle touring. I am non-smoking recovering alcoholic with 10 years sobriety. I sold a small business in May 2005 which had occupied a major part of my life. I retired on a modest private pension, and have loved every minute of retirement, excepting the cancer…
Cancer first entered my life in early 2018 when I went to my GP because of changed urinary habits.
A precautionary blood test (PSA) was done, followed by a DRE. PSA was a bit raised, DRE normal, so another PSA a month later – this was further raised and I was sent to the hospital for an “urgent NHS appointment” which took place within 2 weeks.
At that appointment, flow tests etc were done and I was advised that there was a risk that I might have Prostate Cancer, and that an MRI and Biopsy would be done within a month.
It then transpired that the MRI would be done in a month, reviewed, and the Biopsy hopefully done 4-6 weeks after that.
Sadly, I am by nature a big worrier, and very impatient. I had previously booked a cycling tour which fell in the middle of that time frame, and wanted instant answers – fear of the unknown was also having an adverse effect on my mental sobriety…
So I switched to the private sector and paid for an MRI and TRUS biopsy.
The results showed a low volume Gleeson 7 prostate cancer showing 3+4. I was put on active surveillance.
Unfortunately, I’d responded badly to the biopsy, with 2 months of varying degrees of pain (not ideal as I’m opiate intolerant) and no cycling.
It all made the prospect of active surveillance, with future Biopsies (though they hoped to be able to be predominantly MRI’s)very unattractive, but I accepted the fact.
I remained on active surveillance for a further 12 months, going back into the NHS.
On 7th October 2019 I had a further MRI, following a raised PSA in September. I’d been told that I’d get the MRI results in 7-10 days.
The NHS doesn’t actually move at that pace, and by the end of the month I was climbing the walls. Active surveillance may be highly effective in monitoring cancer, but for me it was doing my head in – constantly worrying, not sleeping properly, being snappy with my family and with my mind taking me to some very dark places.
I spoke to my consultant in early November. He said I was OK, though the MRI hadn’t been looked at side by side with the previous one and the MDT hadn’t yet reviewed my case.
I was ok for about 24 hours, but my mind took over again, and my mental health was not good.
I wondered about Radical Prostatectomy or other alternatives and took to Google, wondering how other poor souls coped with active surveillance. At that point I found the Focal Therapy Clinic, and filled in an online form on 4/11.
I was delighted to get a call that afternoon from Brian Lynch who talked me through HIFU. For the first time in an age, I had hope that there might be a way forward without the risks involved in a radical prostatectomy, and one which also wouldn’t preclude other treatments at a later date in the event that they were needed. I spoke to my wife at length and we decided to book a consultation with Tim Dudderidge which took place on 11/11.
HIFU seemed much the best way forward – I was more than prepared to take the relatively low risk of loss of sex life, or incontinence against the likelihood of removing the cancer and regaining my emotional sobriety and sanity.
I was frightened of a general anaesthetic, having responded so badly to them in the past, but could not cope with the ongoing worry of active surveillance and living with a growing cancer…
I had the procedure on 5/12 at the Spire hospital in Southampton, going into theatre at about 2.15pm, and being back on the ward at 4.45, with no sickness or pain. I was discharged at about 8.00pm.
I returned home with a catheter in place. On Friday morning, I was thrilled to get an erection, though erections with a catheter in place are far from comfortable… An OK day, though a bit of post anaesthetic ennui…
A reasonable night’s sleep, and woke feeling much happier. A slow start, a welcome shower, and over the road to walk .8km (they’d said walk a mile a day…) I returned to the park in the afternoon and walked a further 1.3km.
Lactolose for constipation, and success the following day, and another good walk.
Over the next few days, continuing to walk and recover. Fair to say that the most difficult thing was being woken by the catheter every time I got an erection, and not being able to masturbate or make love to relieve it.
On the Wednesday I walked 3.9km, so gradually recovering.
On Thursday, delighted to go to the Spire to have the catheter out, and be discharged a couple of hours later having successfully peed. So looking as though no incontinence problems. That night, able to make love, though didn’t orgasm while inside. Needed manual help, though a positive side effect of HiFU seems to be that I don’t reach orgasm as quickly; if anything orgasms are now more powerful, though with much reduced ejaculate. Whether it is psychological or physical, I don’t know, but our sex life has improved in terms of both frequency and intensity post HIFU.
The walking regime continued, and on Thursday 19th, 2 weeks after the op I went for my first run – 5km. My first bike ride was on Tuesday 24th Dec – a joy.
I gradually improved speed and distance and soon got back to my normal fitness levels. Much more importantly, I no longer felt I was living with cancer and stopped worrying about it. It felt like a huge burden had been removed…
Three months post op I had another PSA which was 70% lower than pre op. Hopefully all will be well and no further treatment will be needed. The thing is, even if it returns, I feel mentally so much stronger because I feel I have done everything possible and sensible. I have taken some degree of control over the situation. Writing this, when I’m feeling so good about being alive makes me very emotional – in the dark days and nights of active surveillance, I struggled to believe life to be worth living. What can I say, but Thank you.
Perry Letcher – May 18th, 2020
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