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March is Prostate Cancer Awareness Month, a time to raise awareness and share the stories of those affected by prostate cancer. To mark it, Ian has written about his experience of diagnosis and the type of treatment he has had.
Ian was 55 when he was diagnosed with prostate cancer in May 2015. Since then Ian has had surgery (prostatectomy), radiotherapy, and is currently on hormone therapy.
Ian lives with his wife Sandra, and has three sons. Ian is a Physics teacher and Head of Science at a secondary school. Ian is also a buddy with the Edinburgh and Lothians Prostate Cancer Support Group.
I am indestructible, or so I thought. I was working 55-60 hours per week, plus 7.5 hours commuting. I was fatigued but I thought that just went with the territory of my line of work.
A few years before I was diagnosed, I noticed I was getting up to the toilet for a wee several times each night, with some nights worse than others. I also noticed that when I thought I had finished weeing I then dribbled into my underwear. I found all of this irritating but put it down to the ageing process and not to do with my health.
In January 2015 I was seeing my GP about several things, including the night weeing (nocturia is its technical name!). He suddenly asked if I had ever had a digital rectal examination to check my prostate, or a PSA test. I replied I hadn't had either of these, thinking am I really going to have a doctor push his finger up my back passage now? He asked me to drop my trousers and proceeded to 'feel' my prostate gland through my back passage. He told me it was enlarged but felt smooth, which was a good thing.
A week later he phoned to tell me my PSA was 6.9, which was higher than it should be and that he would refer me for a biopsy. He was convinced it wouldn't be cancer but wanted to check for sure.
In April 2015, I went for a transrectal ultrasound guided biopsy (TRUS). To say I was nervous about a doctor putting an ultrasound probe in my back passage and then sticking ten different needles into my prostate through my rectum is an understatement. I was warned about the risk of infection and given strong antibiotics before the procedure.
A couple of weeks later a letter arrived with an appointment to go and see the doctor who carried out the biopsy. At the appointment I was told that some of the biopsy cores showed cancer, with a Gleason score of 3+4. I had never heard of the Gleason system and it was explained to me that day. I was told that a Gleason 7 wasn't a tiger but neither was it a pussycat, so I would be moving to the 'big boys' now. My wife and I went home in total shock. That day is only one of two where I felt sorry enough for myself I cried. We've had lots of ups and downs since that day.
In May I had an MRI which showed a tumour on one side of my prostate which was visible from the centre, right to the edge of the gland, almost like an arrow. There was a question mark over whether the cancer had broken through to outside the prostate.
Early June 2015 - I met with a urology professor and surgeon to discuss what the options were. I was offered a radical prostatectomy as a potential cure, as margins would be cleared around the prostate. He told me I should speak to the oncologists too, to look at all my other options. I was taken to see a Urology Specialist Nurse after the talk with the professor. I remember clearly a nurse taking my hand and asking if I was alright. Being male and Scottish, I replied I was fine!
A week or two later I spoke to an oncologist who offered external beam radiotherapy as a curative attempt. He told me there was a 20% chance the surgeons would leave cancer behind.
After a lot of discussions, reading, and using the buddy system of the support group in Edinburgh, I elected to have surgery. It went as well as it could; I went into theatre at 9am and started to come around at 1pm in the high dependency unit. I went up to a ward late afternoon and went home two days later with a catheter bag. It was weird having a catheter but it is amazing what you get used to and put up with.
Fast forward 11 days and I had an x-ray leak test to check the join to my bladder had healed. I then had the catheter removed and started leaking a bit. It's strange going into hospital and coming out a little incontinent. The NHS continence service duly gave me a stock of pads and within a few weeks I no longer needed them.
My recovery was text book; no major infections or issues, but definitely no natural erections anymore. I went back to work and off abroad on holidays, trying to get back to normality.
My histology showed that I had a 'normal' prostate cancer tumour (adenocarcinoma) but there was a second, more aggressive and rare intraductal cancer found, which made my prognosis worse. I was told I was more like a Gleason 4+4 and staging was T3a, as the cancer had actually escaped the prostate.
Three monthly PSA tests, with all the stress, started. PSA was undetectable until 1st September 2016, where a test showed a PSA of 0.3, quickly rising to 0.7 by the third week in October; the second time I cried as the cancer had come back or, in reality, hadn't gone after surgery. Bearing in mind I didn't have a prostate, so shouldn't have any PSA at all, my GP told me not to worry as the figure was still low. I told him respectfully that I probably knew more about this than he did. Fortunately, he started to listen.
I had an MRI scan in October, confirming a tumour where the prostate had been. A PET scan in December also showed a tumour on a bit of seminal vesicle left behind after surgery. I have since had radiotherapy on these areas and am on hormone therapy.
To men and their partners reading this, I would say don't ignore symptoms, even if you feel they are minor or just to do with ageing. All men's prostates grow as we age, and it can be a benign growth of prostatic tissue, but it can also be cancer. Make no mistake - prostate cancer is a killer (one man in the UK dies every 45 minutes from it). The earlier it is caught and treated the better the outcome, with very good results for those who get early treatment.
Questions about prostate cancer? Join our prostate cancer group and start a discussion today.
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This is so true, both men and women can be embarrassed or feel they don’t need to check themselves,It could save your life just don’t be afraid to ask. Thank you Ian for sharing this.
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