A prostate survivor on support groups

Friday 20 April, 2007 by Leroy

I was shocked [when I received the cancer diagnosis] but I was positive that I would get over it. I was ‘blind', of course, and didn't know what was involved. The urologist told me the treatments available: radiotherapy or surgery. The only reason I went for radiotherapy was I'd never been under the surgeon's knife before and I didn't want to start! But I'm pleased I made that decision.

He didn't recommend either treatment. He said, "I'll put you under very good people whichever way you go." This doesn't always happen. A lot of the doctors are surgeons and they're very keen to get you into their operating theatre.

I had 6 months of hormone replacement therapy and then 7 weeks of radiotherapy.

Before I started on the radiotherapy I was asked if I'd go in a clinical trial. For the trial, I went on hormone replacement: 3 tablets a day and an injection once a month for 6 months. They said I would get hot flushes and lose body hair. The hot flushes probably lasted 30 seconds in the night time: that was pretty minimal. Then I started on the radiotherapy.

During radiotherapy I used to go in by train, then go home and have lunch. When I had radiotherapy on Saturdays I'd go and play bowls afterwards. I know from being in a support group that it's not always that easy. I know one fellow who used to get his wife to drive him and he'd go home and sleep for an hour and a half. 

I had no side effects at all from the radiotherapy. The worst problem through the whole treatment was that I'd have to drink 4 or 5 glasses of water before and if you aren't pushed in for the treatment fairly soon that has an effect on you!

So that was probably the worst thing, which was nothing compared to the effects on some of the people I've spoken to. I had a bit of a tender backside, but once treatment finished I was OK. It all just went so nicely. So whether I was being looked after by really good people or whether I was just one of the lucky ones, I don't know. Every 6 months I go back to the hospital for a check-up.

I haven't had any lasting effects. I ride the bike 24 kilometres most days.

I joined a support group. I learnt a lot there. Through the support group I found out about telephone support and volunteered for that. I've had 30 referrals over about 4 years. I've been quite happy to do that and you do get a life satisfaction out of doing that. I can talk to them about radiotherapy and they have the option to talk to someone else about surgery if they want to. I can give them a good story, but they can also talk to other men who've had not-so-good side effects.

I made all my decisions with no information at all and knowing what I do now, I'd still make the same decision. Surgery can have a lot of side effects, so can radiotherapy. I guess it can depend on when the cancer is caught, the stage of the disease.

I think people want to hear personal stories. That's the value of support from others who've had the same experience. A number of the men in the support group have said they learnt more from the group than they learnt from all the doctors they've ever seen. They've got information from a lot of sources at the support group: from other men, visiting speakers, and so on. Doctors are limited for time, but we all expect them to give us all the time that we need, which is probably not possible.


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Updated: 20 Apr, 2007