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User

Posted 12 Mar 2022 at 10:36

I am on hormone therapy and starting radiotherapy in May. PCUK describe the side effects in horrifying detail, but don't say anything about how frequently these occur.

When I read about side effects I'm sort of assuming I'm likely to get all of them at their worst. Does anywhere publish this sort of info to make the risks clearer?

User

Posted 12 Mar 2022 at 13:06

The side effects of treatment are not 'risks' which can be avoided. They are necessary consequences which can be dealt with as and when they occur. I had seven months of hormone therapy then 20 sessions of EBRT ending in November 2019. The hormone therapy side effects were as they usually are - a tendency to fly off the handle or get very emotional about small things, inability to concentrate etc. During the EBRT, from about day 5, I started to get the usual symptoms - fatigue, minor bladder and bowel problems etc. Nothing out of the ordinary! When I saw the specialist nurse on the last day, he said 'Good news and bad. The good news is your treatment is over. The bad news is the side effects will get worse over the next 10 days before tapering off over the coming 8 - 10 weeks'. And he was right, but treatment is easily available for these side effects (I particularly recall the mucous farts! Cortico-steriod spray foam in a can helped there). Bottom line is - of course there are side effects. Your body is being subjected to hormones which normally shouldn't be there. Your testosterone level is plunging. Then you are being hit with hard X-rays. They are not 'magic moonbeams'! But the side effects are not 'horrific' - they are quite manageable, and vary in intensity between individuals. You will get some, but perhaps not all of them. Don't worry about them until they happen. When they do, just remember that they will pass within a matter of weeks. Just hang in there - it will get better!
best wishes,
Hermit

Edited by member 12 Mar 2022 at 14:17 | Reason: Not specified

User

Posted 12 Mar 2022 at 15:08

No you won't get them all.

One thing I would say is to regard exercise as mandatory while on hormone therapy. That seems to make a significant difference to many of the side effects. Most particularly, fatigue, but also things like muscle loss, bone density loss (depending on the exercise), possibly fuzzy brain too.

I did a lot of exercise, but I may have been lucky with side effects too. I didn't get fatigue or hot flushes (about 20% don't get hot flushes, and they're only at a serious level for some others). I lost only a little muscle, but did gain some fat. It didn't completely turn off my sexual function, but obviously did put a big dampener on it.

I'm coming out the other side now, and for me it was all quite bearable and not as bad as I feared, but I'm only too well aware that's not the case for everyone.

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User

Posted 12 Mar 2022 at 13:06

Edited by member 12 Mar 2022 at 14:17 | Reason: Not specified

User

Posted 12 Mar 2022 at 15:08

No you won't get them all.

I'm coming out the other side now, and for me it was all quite bearable and not as bad as I feared, but I'm only too well aware that's not the case for everyone.

User

Posted 12 Mar 2022 at 15:27

Thanks, that makes me feel less anxious about it.

User

Posted 12 Mar 2022 at 15:57

Thank you to Hermit & Andy for the more positive account of your your experiences of HT.

Last week I saw the consultant surgeon I came away leaning in favour of the Open surgery he recommended. Yesterday I thought I was seeing the clinical oncologist and had prepared all my questions, only to discover that I was meeting a general oncologist who specialises in drugs in particular HT. He put forward a very powerful argument in favour of HT even if I decide to have surgery. His main argument was that as my cancer covers 100% of the prostate, although the scans including a recent PET scan found no evidence of the cancer having spread outside the prostate it need to be hit (my words not his) with HT before did break out. I left with a months supply of Bicalutamide, GP appointment at end of the month to have an HT LHRH (injection) & a telephone appointment with clinical oncologist on 1 April.

I have to say I also left she'll shocked having thought I was going to leave the meeting with all of my RT questions answered and the weekend to make up my mind re type of treatment I'm going to go for, I'm now on HT which I have to confess I had hoped to avoid because of the side effects.

Having (not) slept on it and having read your posts I feel like a weight has been lifted off my shoulders. So once again thank you particularly for the advice on exercise.

Edited by member 13 Mar 2022 at 08:51 | Reason: Not specified

User

Posted 12 Mar 2022 at 16:40

There are some side-effects which everyone gets, such as loss of libido, and loss of body hair (and body odour!) but which other side-effects you get is basically pot luck. For me, I had a couple of months of feeling as if my head was stuffed with cotton wool and I was unable to think clearly - that cleared up. I also had fatigue, but I didn't have any hot flushes.

I found the whole experience of HT pretty tolerable, to be honest.

Cheers,

Chris

User

Posted 12 Mar 2022 at 17:47

I had 3yrs of Zoladex ending summer 2018 ( including 2yrs abiraterone, enzalutimide, prednisolone on trial) plus RT. I did seem to get many /most of side effects and I did try to keep as fit as possible being relatively fit beforehand. However, as one sort of expects them it is 'acceptable' and they do fade away. I wouldn't be too bothered having the same treatment again.

Peter

User

Posted 12 Mar 2022 at 18:42

Oh yes - I forgot to mention loss of upper body strength. I started doing some moderate exercises every day with small weights and a kettle bell, and that helped. I also walked as much as possible. I also got hot flushes during the h/t phase of treatment.

Hermit

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