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Malcolm's story

I am 67 years old and my story starts in early 2020 when a routine blood test highlighted a PSA of 4.5. My GP said this was slightly on the high side for my age, and that it should be measured again in the future. Then the pandemic hit and all was forgotten until my wife saw a TV programme about prostate cancer in early 2022 and suggested I check my PSA again. An increase to 4.7, OK slightly higher than last time, and I could either monitor it or investigate. I opted for the latter.

The rectal examination suggested nothing untoward.

One MRI scan later we have a meeting at MKUH and are somewhat surprised to meet a Macmillan nurse. The scan suggested some shadowing around the prostate which the oncology team did not like. The Gleason score was 3+3=6. They wanted to take some biopsies, which they did (up the back passage) which suggested 1 out of 5 were cancerous. The oncology team still wanted to investigate further and so a transperineal biopsy was arranged. At that time MKUH only did these under general anesthetic, which sounded fine, the thought of that by local didn’t appeal! (But given constant improvements in how they do things, MKUH now generally only carry out this procedure under local). I experienced only minor discomfort for a short while after the procedure.

The next meeting was with a consultant surgeon. 5 out of 19 biopsies were now found to be cancerous and a score now of 3+4=7. So action was needed. Surgery details were discussed, radiotherapy touched upon, and a PET scan arranged. Another meeting, this time with a radiotherapy consultant, followed. The PET scan also revealed I had osteoporosis and so new medication was required for this. Thanks. But that medication wasn’t good for any hormone treatment required before radiotherapy, so that helped the decision to opt for surgery. We had booked months back a holiday to America and should we go or cancel was the question to the consultant. “For goodness sake, go off and have a good time” was the answer, he explained that what I had was a slow-growing cancer and no harm should be done by delaying surgery a few weeks. So off we went.

When back, and following several meetings, scans and tests, I was booked into Oxford for a Robotic Assisted Prostatectomy in October 2022. After some 4.5 hours in surgery it was done. I don’t remember much in the ward that afternoon/evening but do recall waking up the following morning looking at the catheter thinking no going back now! The surgeon saw me on his rounds at 08.30 that morning, and said all had gone well. A couple of lymph nodes had also been taken along with one and a half nerves. I was shown how to deal with the catheter, including using the larger night bag (which I placed in a bucket by the bed at home, to take the weight of the bag and to prevent accidental spillages). I had tablets which I had to take short term and the daily blood thinner injection I had to self administer for 28 days. I was advised I had just been through a major operation and given this and my age, a blood clot was a very real potential, hence the blood thinner. I was allowed home that afternoon.

That evening and the next day or two, the weep hole wouldn’t stop weeping and ultimately bleeding. We didn’t like it and neither did the District Nurse who called in so a trip to A&E was necessary. There I was advised to stop the blood thinning injections, which I did, and within two days the hole had stopped bleeding completely, and was sealing up. But I had to restart the injections which all then went OK.

After 10 days the catheter came out, what a great feeling that was! I also started to see the physiotherapist who advised to take things very easy, that I would get very tired for many weeks and I should walk slowly building up distance over time. And don’t forget the pelvic floor exercises. She gave me the Squeezy Connect App to help with these and I have to say it has been very helpful. I still use it today. I was very lucky in that I was “dry” overnight after only around a fortnight, and during the day after 2/3 months. But sudden or unusual movements, actions too fast and lifting too much too soon, all had its impact. So avoid those for many months.

Six weeks after the operation I met the surgeon in Oxford who was pleased with progress and “handed me back” to MKUH.

For the first 18 months I had 3-monthly calls with the oncology nurses following “less than 0.1” PSA blood tests, and now I revert to six monthly tests and calls for five years. Hopefully the interesting part of my story is over, it is now back to life! And I guess the two most important points for me in my journey so far have been:

1. Talk to people about it as soon as you are diagnosed. I found discussion with others so valuable. Here at MKPCS we have very good ears for anyone who wants to talk, openly or confidentially.

2. Keep going on the pelvic floor exercises – If I stop doing them for a couple of days, I quickly know! And I was told they are for life. “Welcome to the club” my daughters say, “now you know how we feel after your grandchildren!!”

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