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My story with Gleason 9 Prostate Cancer

Updated: Jun 12, 2023

I am a very experienced Remote area Registered Nurse. Working in over 70 remote locations from the Canadian Arctic to over 70 remote Aboriginal Communities in Australia as a relief RN working between 6 weeks and 2 year contracts. I chose relief work because it pays more, and I get to spend more time at home between contracts.

I have been married since 1970 to Ellen, also a Registered Nurse, and we have 4 adult children and 12 grandchildren.

I had been getting regular PSA tests for years and there was nothing remarkable until the one that changed everything in 2012. I had my blood taken and thought everything was ok until a year later when I returned for the next test and was greeted by a new doctor and a question...What are you doing about your Prostate Cancer? Apparently, the doctor I had seen for years retired and sold his practice not long after my PSA test and the results were never given to me. You could have knocked me down with a feather after that greeting. I was soon thereafter in a urologist’s office where he did a manual prostate exam followed by a punch biopsy. This was a play on words as it was several mule kicks up the bum. He used a numbing injection but must have missed the area he took his biopsies from. This provided me with the conclusive evidence of Gleason 9 Prostate cancer. Even with this diagnosis I still could not believe it, as I had no symptoms, none! I was told that my cancer was inoperable as there was a likely chance that the cancer would spread and that the only option was Targeted Beam Radiation Therapy and that I would start the treatment following two months of Androgen Suppression Therapy which the hope that the tumour would reduce in size and become less active. This was the first real taste of what was to come. I had hot flushes, terrible mood swings and in the end a complete disconnection between my brain and my penis. I was chemically castrated! This set me up for the radiation therapy of 39 doses of radiation for 39 consecutive days. They said it would be painless, they lied. At the beginning it was painless but toward the end I could feel it burning me inside. This left me with no feeling in my penis that leaked urine and diarrhoea that I had to learn to control as best as I could. I was asked to continue the deprivation therapy, but I found it so disruptive to my already disrupted new life I was only able to tolerate it about 18 months before I stopped it. This required additional monitoring which I was happy to do.

There was no information provided on restoring my penis and sex life and I felt disconnected in many ways, in my relationship within my marriage. I did not know the importance of support groups, and I struggled trying to find my way in this new life. My wife Ellen was my support and my best nurse through this ordeal. We did not attempt to have sex in any way for about two years as my libido was nil and I was like a bear with a sore head. Not very approachable. My penis had shrunk and would no longer fill. Masturbation was very difficult as you have to have something to work with. As I began feeling better, I started trying everything I read about. Vacuum devices, electro-stimulation, vacuum devices that also vibrated, compression rings etc but they all need something to work with. Some started working together which gave me some hope. Viagra at that time was $200 for 12 tablets so it was not something I could try as often as I felt I need to. It worked for some time but unfortunately 100 mg does nothing for me now, so I am going for the injections. Fortunately for me I worked for a medical firm before my diagnoses, for about a year traveling to different medical offices and providing instructions and over 2,500 injections (on Prescription) to men and couples wanting to try this therapy. Who would have thought that I would be one needing that same therapy. Our sex lives have improved a lot. Not back to pre-Prostate Cancer but something to look forward to again and helpful to put my scales all back into place. The radiation treatment left me with lesions in my bladder that bleed from time to time into my pee. A penis that dribbles and since I can’t feel the wee, I don’t know when it is finished. So often I am left with pants that I have dribbled in. I developed a work around for it and try to only pee in my bathroom sink because it has a large, raised glass bowel and I can watch to see when it finally finishes. I try not to drink any fluids after 7:30 PM to reduce the number of times that I must get to use the toilet. Sometimes the flow is great and sometimes it starts and stops over several minutes. My bowel because of the radiation burning has lost its elasticity in places and leaks making life somewhat difficult but again I have found a work around and do not eat certain foods that want to pass too quickly through the system. All this and I am still alive and happy today. If I go out, which I rarely do, I have spare clothes in my car in case of an accident. You are so lucky that the Radiotherapy today is much different and improved, in that techniques of 9 years ago have been developed to reduce the problems that I was left with. Ellen’s journey is her story but also one of finding your way and discovery but fortunately for us we were able to get there together.


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