I was prescribed medication to help with managing bladder issues. Initially this was for 2 weeks to deal with the effects of the biopsy. The prescription was renewed during the second last week of radiotherapy when bladder irritation ramped up. I am still on this drug, 8 months after completion of the radiotherapy. I have made several attempts to come off the capsules but so far have not made it beyond 3 or 4 days before urination becomes restricted and much more frequent at night (nocturia). At this point, I have learned that night-time urination will be more frequent if I drink alcohol or put in a hard effort on a bicycle - the pressure of the saddle is a contributing factor. I now normally have to get up 3 times a night without alcohol or cycling. Cycling typically causes one more trip to the loo. Alcohol (wine or beer, but more so beer) means another 1 or 2 trips to the loo. I haven't tried other types of alcohol for a long time now. I was surprised at how long the bladder side effects lasted. When the oncologist and radiographers told me that side effects would worsen during the last week of radiation and continue to worsen up to 2 weeks afterwards, then begin to lessen around 6-8 weeks after, my brain heard that the side effects would have finished around 6-8 weeks after the radiation. I made friends with other men who went through the radiation treatment at the same time I did and they seem to have had less long-lasting side effects but I don't know to what extent our level of exposure was the same. The most debilitating side effect was in fact the diarrhoea. I found this very painful and exhausting for about 2 weeks. I found the diarrhoea reflex very strong and it felt like I had to pass a large object, even though it was usually just a small amount of mucous. Afterwards I was often soaked in perspiration and completely exhausted. I had to use anti-diarrhoea tablets from the last week of radiation and for another 10 or 11 weeks. The dosage was up to 6 tablets a day at the beginning but after 2 weeks it was down to 3 and then reduced until I felt confident to stop. The advice a radiographer gave me was to take a tablet after each diarrhoea episode. On occasion I still have to take 1 tablet when a new food or drink causes a diarrhoea reaction the day after but this rarely happens now (after 8 months).
I have only recently had any sexual dreams and still have had no waking time sexual interest. I haven't had an erection, certainly since going on the hormone treatment and possibly longer, since I was going through diagnosis. The reduction in size of my penis has sometimes caused issues with urination while standing up. The only solution when it has got really small is to sit down!
I have consulted my GP about swollen feet and legs and pain in joints, especially in the feet, as well as some loss of feeling in the feet and lower legs. I was scanned and tested for a variety of issues and am still due to attend a foot and ankle clinic but no other causes, apart from some arthritis, have been identified to date. I am assuming that most of this has been caused by the hormone treatment and hopefully will dissipate when that treatment ends.
In general I thought I was managing my emotional and mental health quite well but looking back, at various points, I realised that I had been operating in a kind of foggy tunnel, just getting from day to day. On the other hand, I made some new friends with men going through prostate cancer treatment at the same time I did and found that very supportive. I actually looked forward to the daily interactions with fellow patients and hospital staff, particularly the radiographers, during the 4 weeks of radiation therapy. So, although, I found myself emotionally stretched, there were emotional highlights as well.
In two ways: the first was physical, in that I was a regular cyclist before diagnosis and planning to undertake a 2-week cycling adventure in France. 12 months after my diagnosis, I was able to get back on a bike for short rides and after 14 months I am taking regular short rides. In the meantime I have put on a great deal of weight and suffer from muscle weakness and joint pain so there is a long way to go before I can plan the adventure again. On the other hand, if I warm up slowly, the cycling can relieve the joint pain temporarily and in recent weeks I have been feeling stronger. Progress is definitely happening.
Yes
I did not feel I had any option. I couldn't afford to let a locally advanced cancer carry on growing. Surgical options were ruled out by the oncologist and hormone treatment on its own would not have removed the cancer.
As I do not have a partner, these side effects have not come to bear on a relationship. In terms of self-image, the loss of libido has been so total that it is a part of life that is sort of "parked". In so far as I have imagined having a relationship, I have tended to dismiss this as a possibility and have focused on achievements that I can fulfil on any given day.
Walking and more recently some reasonably easy cycling have helped with the joint soreness and muscle weakness. If I warm up slowly, I can get into a "groove" and enjoy a walk of up to 5 miles or a cycle of 15 miles. My first walk was about 10 days after my last radiation treatment and I managed a slow couple of miles. The first cycle was about 6 weeks after radiation and was way too soon, but now, 8 months after radiation, I have just moved up from a weekly ride to 2 or 3 rides a week.
Support from friends and family has kept me going. New friendships created with other men going through prostate cancer treatment at the same time have been very helpful and supportive. Overall, I have been positive about the outcome of the treatment and the biggest challenge has been the length of time spent on hormone treatment and the effect it has had on my sense of physical strength and energy. Mostly I have taken this on as a challenge to keep pushing at what I can achieve physically. I have taken to afternoon naps though. They have been a game-changer in terms of improving energy and, I think, healing.
This treatment has forced me to stop a physical activity (cycling) that provided me with a lot of pleasure both from the physical achievement and comradeship of cycling friends. That loss has probably been the most keenly felt. It has also meant I have been able to do less work but, as I am self employed and reducing my work load in preparation for retirement - and clients have been super-supportive - this has been less of an issue than it might have been. I don't enjoy the hot flushes but they are a minor irritant now. 14 months after my diagnosis, I am making progress on the physical aspects even though I still have just over 4 more months of hormone treatment to go. I am very much looking forward to what I might be able to do then.
Yes
I did not have any viable alternatives to a course of treatment that included hormone treatment plus a 4 week course of radiation treatment. I explored surgical alternatives with my oncologist but he ruled them out due to the state of my cancer. Neither did I feel that I could ignore a locally advanced cancer. In the end this was the best treatment route for me given the current treatments available.
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