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External Beam RT and HDR Brachytherapy - my path

User
Posted 01 Jan 2022 at 07:28

Originally Posted by: Online Community Member
Good news Andy although I imagined you to have an impressive Poirot style 'tache ๐Ÿฅธ

Ah no, I have a fairly close cropped full beard, except trimmed around the edges. Now that it's all grey or white, it looks more like a goatee on Zoom.

I did used to work with a guy who was at the time in the Guinness Book Of Records as having the longest moustache in the UK. A great character at customer meetings, and a few times a year, he'd be late in because he was on one of the breakfast TV shows having his 'tache unrolled and measured.

User
Posted 01 Jan 2022 at 18:40
Jules about recovery after HT etc. I was on Zoladex for 3yrs included in that was 2yrs via trial with abiraterone, enzalutimide and prednisolone. HT finished summer 2018 and I have to say think I had most of potential side effects - hot flushes, big weight gain mostly around stomach, muscle loss, strength loss, emotions to pot, loss of all body hair etc etc. I was pretty active, not overweight etc and tried best to carry on some exercise throughout.

It's been said a few times on this forum that recovery from side effects can take as long as treatment lasted and that was practically the case with me. Although I gradually got fitter, leaner etc think it was only half way through 2021 I felt anything like I did, can do most of what I want now. Weight was a big emotional thing for me, rightly or wrongly, I've just got a few kgs to go to get back below 70kg from 'worst' of 83kg.

But I'd go through it all again if needed, it's done its job up to now.

Peter

User
Posted 01 Jan 2022 at 21:27

Anecdotally, there seems to be two key patterns:
- the side effects take the same amount of time to go as the amount of time you were on HT
- side effects which appeared very quickly when you started HT tend to disappear quickly when you stop, whereas side effects which developed over a long period of time take a long time to get rid of

Some side effects are permanent for almost all men (e.g. dry orgasms), some are permanent for the men who experience them (moobs and changes to the pelvis) and others might be permanent for some men but not all (like hot flushes)

Edited by member 01 Jan 2022 at 23:34  | Reason: typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jan 2022 at 23:50

Agree on the two types of side effects, except the quick ones only go when your Testosterone recovers, which is some time after the HT finishes.

Dry orgasms should only be a temporary side effect of hormone therapy while you have no Testosterone.

However, dry orgasms are usually a permanent side effect of the radiotherapy you will have had if you are in a position to come off hormone therapy. Actually, I got a very small mount of semen back when my Testosterone came back and PSA rose, which was a bit of a surprise having got used to having none.

I talked with a consultant radiographer about this a couple of years ago, asking why, if the radiotherapy supposedly only kills the cancer cells, why doesn't the prostate work again afterwards? He said that on average, radiotherapy leaves the prostate about 5% effective because of the fibrosis damage it does mainly to the smooth muscle of the prostate. However, this varies considerably between different men, with a small number getting back up to half their semen, but most men getting back nothing.

Just to update/correct my December post, I've decided hair is regrowing on my arms, probably quite quickly now, although I never was very hairy.

User
Posted 02 Jan 2022 at 00:49

Thank you Andy, Dave, Lyn and Peter,

Loss of Libido would have to be one side effect which comes on quickly but doesn't return until testosterone levels rise again surely?

The body composition fat v muscle battle seems unwinable until testosterone returns.

There's a question in my mind about how much part testosterone powered drive plays in sustaining effort at something like cycling for a couple of hours or more. 12 months into HT/Zoladex and about 3 months past RT I hit a low point in my riding endurance but now, about a year and a half in, I think I've come to terms with not having the "inspiration" of testosterone supporting me and my average riding speed is on the way back up.

Much as Zoladex is a life saver, I'll still be glad to be off it and back to the point where some testosterone reappears [hopefully, since I'm 74]

Jules

Edited by member 02 Jan 2022 at 00:52  | Reason: Not specified

User
Posted 02 Jan 2022 at 01:42
Not always the case. Over the years, I have seen a number of members here whose first signal that HT was finished was an erection. I can also think of members who knew that their HT was becoming ineffective (or that an injection had been a duff) because they felt randy. The quickest side effect to kick in and the earliest side effect to wear off ๐Ÿคทโ€โ™€๏ธ
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jan 2022 at 02:26

Thanks Lyn, that's interesting. Seems to indicate that Zoladex is doing more than just suppressing testosterone and something else is freed up by the disappearance of Z.

Jules

User
Posted 02 Jan 2022 at 19:34
Yes to the HT effect wearing off by evidence of 'randiness'- for me it seemed to return suddenly and I sort of felt like a teenager being turned on by by anything and seemingly regular erections. I remember it well as it so happened I was at son's house dog sitting for 2 weeks. The 'extreme' urge seemed to ease when I got home to wife?? Libido been fine though since certainly and ability. Dry orgasms remain and I seem to still have a degree of hot flushes of a night but nothing like they were. On the fatigue/stamina angle, I did try to continue windsurfing whilst on treatment, safely when windy enough but not too windy and on a lake, I found that I needed to sail to other side of lake and literally rest for 10 mins as was so tired. That obviously got better after a while and I got a paddleboard to fill in time on water.

Peter

User
Posted 03 Jan 2022 at 09:39

Originally Posted by: Online Community Member
Yes to the HT effect wearing off by evidence of 'randiness'- for me it seemed to return suddenly and I sort of felt like a teenager being turned on by by anything and seemingly regular erections.
Peter

That's pretty funny Peter and possibly a good thing that it wasn't permanent.

Jules

User
Posted 03 Jan 2022 at 18:33
Yes, at the time I was 'dog sitting' so whilst walking the dogs around country fields it wasn't a problem as didn't come across anyone but must say I was a bit careful whilst walking in to Melton for an espresso as to 'how I looked'. Think it was summer 2019 and pretty warm weather so no long coats to hide any embarrassment.

Peter

User
Posted 28 Feb 2022 at 11:54

After my last hormone therapy jab ran out in Dec 2020, my Testosterone returned between Oct-Dec 2021 (measured at 19.7nmol/l in Dec).

Some things I've noticed which I wasn't necessarily expecting...

I'd always been quite happy with low room temperatures, but over the past few years which does coincide with hormone therapy, I'd got less tolerant to this and had the heating turned up higher. I seem to be OK with lower room temperatures again now, so I now think this may be related to hormone therapy.

As mentioned in another thread, breast pain and I think some breast growth kicked off again when my Testosterone returned. I had stopped taking Tamoxifen a while back, but still available on prescription, so I restarted it and that's fixed this.

My blood glucose levels which were at the low end of normal before treatment had increased to the high end of normal. My monthly readings have been coming back down for a few months now and this morning are back to low end of normal. Emphasises the importance of monitoring blood glucose levels while on hormone therapy. Anyone starting out from a higher level my well go into pre-diabetes or even diabetes.

However, my weight has, if anything, gone up in last few months. Need some better cycling weather.

Edited by member 28 Feb 2022 at 12:32  | Reason: Not specified

User
Posted 28 Feb 2022 at 13:21

Originally Posted by: Online Community Member
Need some better cycling weather.

Pah, same here. We've been deluged with record breaking rain for a couple of weeks now.

Thanks for the post. Always interesting to pick up details on stuff that medical people can't tell us.

Jules

User
Posted 28 Feb 2022 at 13:28
๐Ÿ™„๐ŸŒงโ˜”๐Ÿšตโ€โ™€๏ธ

We have both recently purchased new road bikes which are sitting forlornly in the garage with all the others! John is taking his out to France next week and hoping to get a few hundred KMs under his belt ... which has had to be loosened a number of notches recently. Perhaps you should jump in the car and join him there Andy?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 May 2022 at 13:42

Just had an oncology consultation 33 months after the radiotherapy, and 16 months after hormone therapy ran out. This was my first face-to-face consultation for over 3 years. Testosterone has stabilised around 19.5 and PSA crept up to 0.03 (it will almost certainly go higher). Consultant and I very pleased with results so far. As I said to him, I almost wouldn't know anything had been done. Still have rectal bleeding occasionally, but it's minor and painless and not a QoL issue. Had it checked by colorectal and they can see radiation proctitis (radiation burn to rectum). A few weeks ago, I got one of the NHS bowel screening tests in the post. I waited a few days until I'd had no visible bleeding and did it, and it's come back clear.

I now switch to 6-monthly PSA testing and consultations (although consultations have never managed to be that frequent even when they were supposed to be).

I had naively assumed the weight I'd put on during HT would roll off, but not a bit of it. Indeed it started to go up faster when Testosterone returned. So keeping a better eye on diet and doing lots more cycling now the weather is getting better. Not losing much weight as yet, but a noticeable reduction in body fat and increase in muscle, which is good.

Edited by member 10 May 2022 at 13:45  | Reason: Not specified

User
Posted 10 May 2022 at 13:56
Sounds good andy. Did you have any treatment at all for the rectal bleeding.? . Think i have read somewhere there is some foam you can use or similar ? Im currently waiting for an appt for an 'inspection'. Cheers!
User
Posted 11 May 2022 at 00:24

That must be very re-assuring news Andy. It's such a long wait to pass the 5 year survival point yet alone the 10 year mark but things are looking good for you.

Interesting about the weight gain but if that's the worst of it you're laughing.

Jules

User
Posted 11 May 2022 at 04:27

Originally Posted by: Online Community Member
Sounds good andy. Did you have any treatment at all for the rectal bleeding.? . Think i have read somewhere there is some foam you can use or similar ? Im currently waiting for an appt for an 'inspection'. Cheers!

I had an inspection, which confirmed radiation proctitis. It wasn't sufficiently thorough to rule out bleeding from elsewhere though. Just before the PCa diagnosis, I'd had a sigmoidoscopy screening to check for bowel cancer, and that came back completely clear, and you can't generally get bowel cancer so soon after a clear screening. I'm told they don't do the routine sigmoidoscopy screening anymore, it's just poo-on-a-stick nowadays. At the recent colorectal inspection, the consultant said there's no need to do anything about it, as it's not serious or making me anemic, but she did give me the rectal steroid foam to try if I wanted to. I haven't done that yet as it was getting better by itself, but it may have reached the limit on that and perhaps I should.

My oncologist was also surprised by the gynecomastia on return of Testosterone as he hadn't come across that before, and asked if the Tamoxifen was working, which it is - instantly stopped the pain, and has also reversed the breast gland growth, almost to nothing. It has no effect on breast fat growth (moobs) though. I've been able to steadily reduce the Tamoxifen dose - initially until the pain returned, but I think that's probably finished now and just continuing long enough to completely reverse the breast gland growth, which is almost done now.

Edited by member 11 May 2022 at 04:53  | Reason: Not specified

User
Posted 11 May 2022 at 08:52

Andy62 

Good to hear things are going well, hope it continues for a long time.

Thanks Chris

 

 

 

User
Posted 25 Jun 2022 at 02:41

My GP is starting to catch up with routine stuff like blood tests, and with them not having done one since a while before COVID (and not being able to see the copious tests the hospital has done during that period), they did a whole load of routine ones, some of which I'd never had before (HbA1c, Thyroid, B12/folate). I took the opportunity to ask for PSA and Testosterone to be added, which they did.

PSA has risen from 0.03 to 0.04 which is expected as my prostate wakes up after Testosterone returned.

I thought my Testosterone had settled at around 19.5 as last two readings were around that, but this time it's come back as 26.5 and flagged as above the normal range for my age. It's not much above the max limit they give (25.7), but can't help thinking that having a high Testosterone level is probably not the best idea after prostate cancer, and it might still be going up. This got me thinking, I've been taking small amounts of Tamoxifen (10mg every 3 days) to prevent gynecomastia which reappeared when my Testosterone returned. Could the Tamoxifen be raising Testosterone levels? Well, the answer would appear to be yes, according to the paper The Role of Estrogen Modulators in Male Hypogonadism and Infertility, although that would only apply if you aren't on hormone therapy (so don't worry about taking Tamoxifen if you're on hormone therapy). I finished on Tamoxifen 2 weeks before the blood test, but it takes longer than that for it to leave your system. However, I'd been on Tamoxifen for 2 months before the second of the "stable" Testosterone readings, and that one hadn't changed as a result of being on Tamoxifen. So I can't tell yet if the Tamoxifen after finishing hormone therapy has increased my Testosterone - I'll have a better idea if I get another Testosterone test in a few months.

I have no idea what my level was before hormone therapy, as it was never measured.

Good news was all the other blood test levels were in the normal range which is the first time since just before starting hormone therapy, except my kidney function which has always been slightly below par, but has not got any worse in the last 10 years so no one seems concerned.

Edited by member 25 Jun 2022 at 02:44  | Reason: Not specified

User
Posted 26 Jun 2022 at 02:19

Good to see everything is going nicely.

Dave

 
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