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Andrew's Story

Ethnicity
White British
Age
60-69
Work
Office
Sexual Orientation
Prefer not to say
Geography
South East
Relationship status
Single/divorced
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Hormone Therapy (injections and relugolix tablets)

Tips and advice for any sexual side effects of treatment

I was slightly concerned about temporary side effects, but thought I'd handle those for the 18-36 months I was expected to be on hormone therapy. However, I was much more concerned about permanent sexual side effects from hormone therapy, so I had an appointment with ED clinic right at the start to advise how to protect long term sexual function after the hormone therapy finished. The big message was "Use it or lose it" even if you have no libido and no inclination. I was prescribed daily low dose medication and could still get erections if I concentrated harder and I did so regularly in spite of reducing libido and no inclination. After about 9 months, with libido non-existent, I just wasn't getting around to having erections as often and was prescribed a pump, which was useful. I lost a tiny bit of length during the period I wasn't having erections so often, but I think the pump and medication largely protected me against this common side effect.

Tips and advice for any physical side effects of treatment

I was prescribed medication when I started to get breast gland growth and pain, and that stopped it immediately. I was told to adjust the medication dose to symptoms, which meant I went on and off it several times. It worked very well, including shrinking breast glands back. (It has no effect on breast fat, some of which I also got.) I did lots of exercise, in my case cycling, and an exercise class specifically for cancer patients on hormone therapy, to try and reduce the effects of muscle loss, bone density loss, and fat gain. Although I had these side effects, they were significantly less than for many patients. I also avoided fatigue, which is very common on hormone therapy. I was lucky in not having hot sweats - about 20% of men on hormone therapy don't get them.

How this treatment impacted my life the most

I put a lot of work in at the beginning to find out how to handle hormone therapy, and I think that meant I handled them better than is commonly the case, with no ongoing side effects afterwards. This information wasn't provided to me (or anyone else I know), and isn't easy to find.

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

The treatment currently looks like it worked well for me, and because I learned at the outset how to avoid the main side effects, it hasn't done me the long term harm that happens to some people.

Radiotherapy

Tips and advice for any sexual side effects of treatment

Made sure to get frequent erections during treatment - was told "Use it or lose it". Radiotherapy didn't have any impact on these (maybe because I did them).

How this treatment impacted my life the most

It was a daily trip for treatment for 4½ weeks, which took out half of each day. However, I quickly got to enjoy the trips because it was good meeting the other patients and the staff. Actually, it was a bit emotional when it finished, because of not seeing those people every day, and it takes a while before you switch to thinking my treatment is now behind me.

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

It seems to have worked well, without any major side effects. I do have a little rectal bleeding occasionally some years later, but it's not painful or incontinent, and therefore it has no impact on my quality of life. Other that that, I wouldn't now know anything had been done. My PSA has stayed low so far. Everything else still works as it did before (except dry orgasms which is actually quite convenient). Before treatment, I was imagining all sorts of things that might be wrong with me after treatment, but luckily, none of those happened.

High Dose Rate Brachytherapy

How this treatment impacted my life the most

The treatment was 2 days in hospital for one HDR Brachytherapy session, immediately after finishing 4½ weeks of external beam radiotherapy. On going home, bladder capacity was very reduced, but recovered over the next week. Also leaked a tiny bit of urine and blood all the time so I wore a pad for a month until it stopped. I was back cycling 5 days later, although taking things gently, and I had switched to a noseless saddle which had nothing under my perineum, so it didn't apply any pressure to that area. Erections were painful initially and reduced length, but this recovered over a couple of months back to normal. Peeing was slower afterwards, but about 5 months later returned to normal.

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

The treatment appears to have worked well, and other than some occasional minor rectal bleeding which is not painful or incontinent and hence has no impact on quality of life, and dry orgasms which I found to be quite convenient, I have no side effects, and everything works well.

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