My Prostate Cancer story 2016 to 2024; Kerry Schofield

Early summer of 2016, we were holidaying on our narrowboat and my wife commented I was peeing quite frequently. When I retired from full time work in 2008 at the age of 58, I had had a medical examination paid for by my employers. This was the first time I had ever heard of PSA testing. The report came back as generally my being in good health and ready for the third age of life. With the knowledge now of PSA and how it might be a marker for Prostate cancer, I had one or two more tests, none showing any emerging issue. Over the next few years, I forgot about it but after that boating trip in 2016, I went to see my GP. Now, I think this was the first bit of luck. I saw the senior partner and he had had PC so was attuned to it. He undertook a DRE and said he thought he could feel something and sent me for another PSA. At 9.5, he referred me to Urology at Derby Royal Hospital. Seeing the consultant there who had my PSA results over the years and undertook another DRE, he offered me an MRI scan and a biopsy. He did say I could do the MRI and then see if the biopsy was needed but suggested I went for the “bundle”.

Kerry Schofield Prostate Cancer UK
Kerry Schofield Prostate Cancer UK Walk

I found the MRI scan un-nerving being in such a narrow tube, but I shut my eyes and hoped it would be over soon. It was. A week later, I had an ultrasound guided biopsy via the rectum. Not hugely pleasant, but well handled with a nurse chatting away whilst the work was going on behind me.

Soon after, in August 2016, I had a return appointment with the Urology consultant who confirmed my Prostate Cancer diagnosis. I was told that the cancer was still within the capsule but on the edge. I was Gleason 7 (3+4) and T3, which at the time meant little, and the consultant said it was treatable either by surgery (robotic) or Radiotherapy, both “gold standard treatments that could cure me”, quite a bold statement I thought! He said there was no immediate rush and to think about it. Meanwhile he arranged a bone scan to check that there was no “leakage” from the Prostate as bone cancer was a common secondary. That was all clear. He also arranged a consultation with an Oncologist for me to discuss that option. This happened in mid-September and I was the Oncology Doctor’s last appointment of the day and he was generous enough to give me a good half hour of his time, even showing me my MRI scan. He was amazed that at the time, my wife and I were on holiday in Scotland and I had travelled back to Derby for the consultation and returning back to Scotland the next day!

I was still debating which treatment to go for whilst we were enjoying our holiday. The hospital had given me a contact number for the Urology/Oncology Specialist Nurses. If I rang during the day, left a voice mail, I would nearly always get a return the same day. I contacted them and said that I had had a good discussion about the radiotherapy treatment but was less clear about what the surgery option was. One of the specialist nurses have me 20 mins of her time when we were back from holiday, explaining what would be done if I opted for that. She said, in my case, though no breakthrough of the capsule had been found, that local lymph glands would also be removed which would affect my erections.

At this point, I would say that sex has never really figured highly in our married life and we have been happy with each other’s company. We have just celebrated our Golden wedding anniversary in 2023. So, the potential side effects of surgery were not a great issue.

During this time reported above, I had been actively researching Prostate Cancer and its treatment options from information that the hospital had provided and from the Prostate Cancer UK website. I highly recommend the latter for comprehensive information. I also joined the newly set up Prostate Cancer Support Group and still go to this on a monthly basis.

After a few weeks of dithering, I elected to have External Beam Radiotherapy (EBRT). One factor that helped this decision was that Derby Royal had recently acquired 3 Trubeam RT machines which were more accurate in placing the beam to help minimise collateral damage to organs around the prostate. As a Chartered Mechanical Engineer, this seemed a more scientific treatment than cutting out the prostate! Also, a couple of friends had had surgery, albeit open surgery, not robotic, and suffered issues.

Throughout the couple of months after the cancer was confirmed, I felt wholly positive about life, the treatment and life afterwards. Dammit, I was only 66, loads of life left yet! I also published my ongoing story on Facebook hoping that this might help friends who might be going through the same thing. One outcome of this was a message from a contact in Ecuador who had a good friend in Scotland who had just been diagnosed. We got in touch and helped him understand better as I seemed to have more information than his medical team were offering him. He was certainly more concerned about his post-treatment sex life than I was.

So, having decided on EBRT, I saw the Oncology doctor – a really nice guy – in November and he put me on a 4-week course of Bicalutamide and in 2 weeks time had my first Prostap injection into the abdomen area followed by subsequent injections every 3 months for 2 years. I also had a CT scan where small dots were tattooed onto my lower abdomen to guide the EBRT machine. I could never find them!

Early in 2017, as the side effects of the hormone treatment were kicking in, hot flushes (absolutely no sympathy from my wife!!), some weight gain, reduced beard growth, slight breast enlargement, loss of libido, all coped with, I saw the Radiographer to discuss my EBRT treatment and it was explained that I would need either 20 sessions (5 a week over 4 weeks with the weekends off) or 37 over 7 weeks and this would be decided just before my treatment started. Dates were discussed and made to fit in to travel arrangements with my bus pass. Parking at the hospital is not easy and I could easily get to the hospital on two buses from home.

Treatment started in February 2017. I was thankful that it had been decided to give me 20 sessions, not 37. On arriving at the clinic, I had to insert a suppository into my rectum which acted in about 10 mins to empty my lower bowel. Then, 30 mins before treatment I had to drink 2 cups of water so as to fill the bladder. The radiology team positioned me on a table and then left the room. After a few mins, the table moved slightly and the radiotherapy machine rotated around me, first one way, then the other way. After around 10 mins, the team came back into the room and helped me off the table. I had to lower my trousers and my underpants whilst treatment was happening, so I had to get dressed afterwards and put my shoes back on. And so, this went on daily. Being February, we had no particular plans to go anywhere so the daily ritual was quite tolerable. My wife always accompanied me, bless her, and on the homeward bus change in Derby, we treated ourselves to a cream bun at the cake shop we passed by.

After two weeks of this, I had a PSA test. I cannot remember the value but it was markedly reduced from the initial 9.5. I was now getting some peeing and pooping issues with increased frequency of both, but in myself, I felt comfortable. The treatment ended in March 2017 and my PSA was un-measurable. Follow up appointments with the Oncologist showed that the treatment had been successful so far, but I would be monitored 6-monthly for some years. My PSA has slowly risen from unmeasurable to around a steady 0.5 level now, 7 years after treatment ended and both Oncology and Urology have discharged me as cured, the Urology consultant was right.

It’s not all been plain sailing, however. Around 10 months after the end of treatment, peeing issues became quite difficult. Overnight, I was going 5 or 6 times with the urge to go but struggled to do so and had considerable pain. I contacted my Urology help line, who, in the first instance sent me to my GP to check there was no urinary infection, there wasn’t. I was becoming more and more concerned about it, and was pleading with the Urology helpline to help me. They said to come straight in without an appointment. One of the senior nurse specialists saw me and she managed to see a clinic doctor in between his booked appointments and I was put on Mirabegron tablets. I was told this would help relax the bladder but would take some weeks to take effect. I was also booked in for an endoscopic exam via the penis. This was mildly unpleasant, but I was able to see the inside of my bladder in full colour and some of the scar tissue resulting from the EBRT but was told it all looked OK. My first pee after this brought tears to my eyes! Slowly, the overnight peeing reduced in frequency and I plotted a 5-day moving average to show this, the doctor was impressed by this! By autumn 2018 everything had calmed down, I slowly reduced the Mirabegron dosage, finally ceasing to take them. Since then to now, in 2024, things have been fine. Residual side issues are more frequent pooping than I remember doing before the cancer, and more frequent peeing with sometimes leakage and urgency.

But hey! I am alive and living a full life after Prostate Cancer.

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