External Beam RT and HDR Brachytherapy - my path

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.

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

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

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

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

Jules

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

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?

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

Glad you're happy with your results as I know you put a lot of research into it.

I had a routine health check in Jan 2021 and asked for my psa to be included which they agreed to do on the understanding I would refer any questions to the hospital.  It came back 0.08 which was quite a surprise as their undetectable is <0.06. 

So I rang the hospital I'm under the care of to give me a test and it came back <0.05.  Unfortunately 10 months later the test came out detectable at 0.06 which made me wonder if I'd had a pre-warning of something stirring.

Although someone on here wrote a health screening psa test might be done to less accuracy expecting a high result.  So it could be a bit risky for someone without a prostate to have such a test although it doesn't look that way for your test.  Peter

Edited by member 26 Jun 2022 at 14:41  | Reason: Not specified

I appear to have celebrated the good HbA1c result (diabetes screening) by eating a bar of chocolate and half a packet of biscuits. Oh dear...

I've always been a bit concerned about getting diabetes because my mum had it for a while, and so I do monthly fasting blood glucose finger prick tests which have been OK, even when the hormone therapy pushed it up. However, this was the first HbA1c test I've had (which measures average blood glucose over last 90 days).

It's now 3½ years since RT finished and 2¼ years since the last HT injection ran out, and 1 year since everything was just about back to normal.

I had an oncology consultation this week. I was on 6 monthly consultations but I pushed it out to 10 months because my GP had done an extra PSA/Testosterone test as part of a battery of other tests which was fine, I didn't have any problems I needed to talk to the oncologist about, and I know he's snowed under with work. PSA hasn't changed in the last 7 months and is 0.04, having risen from <0.01 as my Testosterone came back (PSA graph). Oncologist pleased. (Me too.) He asked about urinary, rectal, and erectile function, and all are normal. Still have minor rectal bleeding (quite frequent but small amounts, painless, and not incontinent), which I can ask for another referral to colorectal if I want. It has no impact on QoL, but might hide any future bowel cancer. Also asked about breasts where I have more tissue than I had before, but I think I'll just have to live with that. The Tamoxifen reduced breast glands to barely detectable, but there's still breast fat which wasn't there before treatment (and Tamoxifen has no effect on that).

He's now moved me to annual consultations, although PSA tests are still 6-monthly. Also asked me to get another Testosterone test in a year, I think because he's interested in following the graph I produce (as have several clinicians been) rather than because it's likely to be of any ongoing clinical relevance.

Sorry Lyn, can't remember what the biscuits were, but very likely something cheap like crunch creams for which I have an embarrassing soft spot.

Great to hear about your success story on HT/RT route Andy62. I hope mine is as successful.

Derek

Hi Andy,

Great results good to see some successful  Brachytherapy treatment long may it last.

Regards John.

Testosterone levels came up in conversation at The FOPS support group last night. Someone who had seen my PSA graph asked why their own Testosterone was higher (1.something nmol/L) on Prostap. The urologist said Zoladex does keep Testosterone lower than Prostap, but they're both low enough to suppress PSA.

I read the Zoladex test data some time ago, and their aim was to keep Testosterone ≤1.2nmol/L, although it seems it usually does significantly better than this. 1.2nmol/L is sometimes given as the castrate level, although there's no universal agreement on what the castrate level is, and values between 0.7 and 1.7nmol/L are used in different places.

I think that having a very low level (<0.7) when you're on time-limited hormone therapy as part of radiotherapy probably isn't important, but I can't help wondering if it might me more important if you're on lifelong hormone therapy and trying to put off castrate resistance for as long as possible.

Great report Andy. I'm the same treatment as you and about six months ahead of you. I only had two testosterone tests, but then everything returned to normal about 12 months post RT so I didn't have another testosterone test. I'm signed off from the oncologist though the urologist found my file after mislaying it for four years and now wants to follow me up. My PSA bobs around between 0.1 to 0.2. It's up to me how often to have a PSA test, I'll probably have them every six months for a while.

Anyway, a HUGE thanks for the all the advice to date (inc organizing FOPS) and the very best of luck going forward!

ps you can't beat a dark chocolate hobnob :)

Cheers,

Nick

Great stuff Andy. I've screen grabbed the graph and your comment for reference. Peter

Great news Andy onwards and upwards 👍

I hope this helps people at the start or diagnosis of this illness.

HT & RT takes longer, but no surgery being involved, was a big plus for me.

Brilliant new Andy, long may it continue for you.😊

My anxiety levels are building up a bit to my 3 month post RT PSA test on 14th August. It was 0.9 before RT, just hope it’s come down a bit from that But I really don’t know what to expect.

Derek