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External Beam RT and HDR Brachytherapy - my path

User
Posted 26 Dec 2020 at 18:59

Ross,

It depends who is supposed to be doing your PSA tests. At this point, it will be the responsibility of your oncologist, but they may have asked your GP to do it every 3 or 6 months. Do you get a copy of the letters from your oncologist to your GP?

Sometimes my oncologist gives me blood test forms, and sometimes I ask my GP. The receptionist can't order blood tests, so no point in asking them (unless the protocol at your surgery is they go and ask the doctor). I can message my GP directly through the patient portal, and he prints off a form and leaves it to pickup from reception (I've suggested emailing it, but that's a bridge too far so far). I always justify why I'm asking, and he's never refused. Usually, it's in preparation for a consultant appointment, but I have asked for a couple of testosterone tests (one when I saw a reversal of some hormone therapy side effects and wondered if an injection hadn't worked, and the other because my consultant has asked for them now that I'm coming off HT). I have asked for liver function tests a couple of times to make sure my liver is coping with Tamoxifen, because it didn't to start with. My GP has always done them, but that's probably because I had a valid justification. If you just ask for a test without having a valid justification, I can imagine they might say no.

The last consultant letter says he wants 3 monthly PSA and testosterone tests, and it seems to be up to me to ask the GP when one of these is due, but he's given me the test form for a test just before my next consultation 10 months after the last one, and that one has a load of other stuff on it too which I've never had tested before (like bone profile) as well as blood counts, liver, kidney, PSA, testosterone, etc.

So you could ask the receptionist to book you a doctor appointment (assuming you can't do it on a patient portal), and when they ask why, say it's to ask the doctor for one of your routine PSA tests.

I think NICE says you should be tested at least ever 6 months - my consultant has asked for it every 3 months (although in practice, I have slipped that to 4 or 5 months to it lines up with consultations).

User
Posted 26 Dec 2020 at 23:19
Ross, do you get copies of the letters from onco to GP? Does it say in any of the letters that the responsibility for PSA tests has been handed back tobyourcGP and how often they should be done? If it specifically says every 3 months then the receptionist cannot refuse to book you in but if it doesn't mention frequency then the GP practice is reasonable in only doing it every 6 months. My worry for you is that the onco never said anything and so technically, your GP practice could be difficult every time you are due because it has never been formally handed to your GP and is not in your medical notes. If that is the case, you need to get on the phone to your specialist nurse (if you have one) or the onco's secretary and ask them to write to the GP requesting that you have a PSA test every 3 or 6 months at your local surgery. The last thing you need in the current situation is to have to go back to the hospital for regular blood tests.

Looking back at my notes, it seems it was about 5 years before John's PSA tests were handed over to the GP practice.

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

User
Posted 01 Jan 2021 at 03:29

Hi all of you and thanks for your replies. Sorry mine is so late. I'll put it down to being busy at Christmas, but you can guess that's a lie, due to all this 'tier 4' nonsense! It's really due to my awfully bad memory, for which I can only apologise. Dave, I really must get my profile updated, as my psa is now around the 'less than 0.1' mark and Andy and Lyn. No I don't get many of the letters from onco to my gp, although I did get the one following my EBRT back in July.

I suppose I don't need PSA tests at 3-monthly intervals, as the latest three have all been 0.1 or less (if that's possible?) But seeing my HT injecting nurse today, she recommends discussing them with my onco, when I next speak to him in February. He used to give me a blood test form each time I saw him, to use before the next time, but there are no more 'next time's' at the moment, so I don't get them anymore. There's no point in asking to speak to my doctor, as that will never be allowed! And I can't use the 'patient portal' option for an appointment at the moment, as it's been suspended until all this nonsense is over. I also had a specialist nurse, who I've never actually managed to speak to, but I suppose I could try again, if she's still attached to my case somehow?

So I'll just plod along and wait for my phone appt. with onco in Feb. and hopefully that will resolve everything. But once again, thank you all for your help and suggestions.

User
Posted 06 Jan 2021 at 13:38

I've got BO !!!

I didn't expect anything to happen this fast, but 13 days after my last Zoladex expired, BO returned. Thought it might be a once-off, but it's been 3 days on the trot now. It did happen one day while I was on hormone therapy, and I went and got a testosterone test done in case the hormone therapy had failed to work, and it was 0.2 which is about as low as hormone therapy can get Testosterone (latest measurement 10 days before last Zoladex expired was 0.4).

Anyway, dug out my deodorant, only to find that after two years without use, it's dried up!

I'm still somewhat dubious this is related to ending hormone therapy - it seems far too soon.

User
Posted 06 Jan 2021 at 14:36
Congratulations! 😁

It is remarkably quick. It took a good 6 months after stopping HT for me to start needing to use deodorants again.

Cheers,

Chris

User
Posted 11 May 2021 at 19:20

Just had what amounts to my 21 month review after HDR Boost (radiotherapy), and 4½ months after Zoladex ran out.

PSA has been <0.01 since the radiotherapy (ignoring one spurious reading 2 days after COVID vaccination, which returned to expected value 2 months later).
Testosterone is still 0.2 nmol/L, which means I'm still effectively on hormone therapy, but that's unsurprising at this point.

Consultation was going to be with consultant, but was with CNS instead as I'm stable and he's overloaded. They're very happy with PSA remaining undetectable since RT, but that's mainly because testosterone hasn't returned yet 4½ months after HT ran out (not surprising).

I will be continuing with 3-monthly PSA and Testosterone tests at least until testosterone is back to normal, but they're now regarding my treatment as complete, and GP will be notified. Next appointment would normally be 6 months, but this one was 10 months since the last and I said I was OK with another 10 months.

I will be referred to colo-rectal for the rectal bleeding, and back to urology which they do at the end of oncology treatment. Also will have a second holistic needs analysis (HNA).

I know only too well there's plenty of opportunity for things to go wrong, and as yet I have no clue what my PSA will become when testosterone returns, but I think I've hit a notable milestone with oncology marking my treatment complete.

User
Posted 11 May 2021 at 22:41

Hi Andy, good to hear from you. As you know from my thread it took nine months before my testosterone recovered. I was getting worried it may not come back. I was surprised that it didn't come back gradually; I just woke up one morning with a hard on and from then on I would say "I've got my mo-Jo back".

My psa is 0.2 the first time it has been above undetectable, I'm curious as to what it will settle down at. I know I'm going to be anxious as it will almost certainly get higher, but if the oncos deem anything less than 2.1 to be OK then I just need to draw a line in the sand <2.1 happy: >2.1 not happy. 

Dave

User
Posted 24 Sep 2021 at 16:32

Barry, I'm 9 months since HT ran out now. Having more unexpected erections, including the unexplained semis that just spring up, and make you wonder what your dick can see that you can't, a phenomena I had almost forgotten about. However, still no libido and I don't think there's a noticeable increase in body hair yet. Should get another PSA and testosterone test next month, but don't know if that will happen in the current climate.

The consultation for my rectal bleeding referral came through, and confirmed to be radiation proctitis. I can choose if I simply ignore and live with it (it's not causing any QoL issues), or try treating it with steroid foam. I'll try the foam after my next PSA test (as steroids do impact PSA levels).

The colo-rectal consultant was a very nice lady. She loved the diary, chart, medications, and blood test spreadsheet I brought along, and spent a while looking through it, and asked me about my prostate treatment and commented on things like my PSA readings. She asked if I was an expert patient and I said yes for prostates, but not an expert patient on bowels. She responded, "Not an expert patient on bowels, *YET*!". I was the last patient of the day, and we then talked about my support group work.

User
Posted 25 Oct 2021 at 23:02

Just had another 3-monthly PSA/Testosterone test, 10 months after the last Zoladex ran out. PSA still <0.01, but Testosterone has gone from 0.3 to 9.8 in those 3 months. (Hospital says normal for my age is 6.7 to 25.7.) Probably most of that change was in only the last 6 weeks. So I'm now within the normal range for Testosterone, albeit at the lower end, but it may still go up some more. I've no idea what *my* normal was, as it wasn't measured before starting hormone therapy. A bit surprised the PSA is still <0.01 as I still have a prostate, but maybe it takes time to respond to the Testosterone recovery.

As mentioned before, unplanned erections had returned, but I don't think my libido has returned yet. Maybe it needs some time or a higher Testosterone level.

User
Posted 25 Oct 2021 at 23:30
Unplanned Hard-Ons, now I miss those!
User
Posted 26 Oct 2021 at 10:04

Originally Posted by: Online Community Member
Unplanned Hard-Ons, now I miss those!

Me too ✋

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

User
Posted 26 Oct 2021 at 10:05
Looking good Andy x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Oct 2021 at 11:00

That is great news. It is a very scary thought that the testosterone might not come back after HT. I have over a year to go and hoping for a similarly good outcome.

Best wishes. 

Jim

User
Posted 26 Oct 2021 at 11:36

Jim, it's quite rare that testosterone doesn't return, although I know only too well that doesn't stop it being a worry. It usually doesn't return to the same level, but as your level declines with age, it wouldn't be the same level in any case if you hadn't ever had hormone therapy.

It used to be very difficult to get TRT (Testosterone Replacement Therapy) if testosterone failed to return, because there was a thought that it would bring the prostate cancer back. This has now been disproved - the down side is that if the cancer was going to come back anyway, it might do so sooner if you're on TRT.

I was even offered TRT by urology 4 months ago, but declined it, as it is likely to slow or prevent your own testosterone returning.

User
Posted 30 Dec 2021 at 19:31

Had another PSA/Testosterone test a couple of months after the last. Testosterone has doubled from almost 10 nmol/L to almost 20 nmol/L, and PSA is now detectable at 0.02 for the first time since RT treatment (not a surprise as I still have a prostate - I expect PSA to rise). This test wasn't really clinically indicated, but because I have been accurately graphing my Testosterone and PSA as I've come off hormone therapy, the urologist was just as interested as me to see how it was going. I think it was a bit of a surprise to him that nothing happens for months after the HT runs out, and then it can come back quite suddenly. So, I think that my Testosterone has gone from nearly nothing to normal levels in about 3 months, starting 9 months after last HT injection ran out. During those initial 9 months, Testosterone had remained at nearly nothing.

I have no idea what my normal Testosterone level is, as it was never measured before HT. That means it might still go up further (not much more I hope!). I don't yet have body hair back, although things like that probably take time. Having said that, I never completely lost it, and it's not easy to tell if what remained might be getting slightly more now. My beard is growing faster - back to twice weekly trims rather than every 2 weeks during HT.

User
Posted 30 Dec 2021 at 21:33

Thanks for the update Andy. As you know my testosterone followed a similar path, about nine months of nothing then a rapid rise. Neither of my testosterone tests were clinically indicated, my GP thinks the hospital ordered it the hospital thinks the GP ordered it. I know that I ordered it. Anyway as mine leveled out at just under 20 I won't order any more.

Dave

User
Posted 31 Dec 2021 at 06:13

Andy,

now that it's about a year since you finished taking Zoladex could you comment on on the physical and even mental side of your return to earth please? It's well reported here that it can take a year for testosterone to get back into full swing but I'm wondering if the same is true for energy levels, endurance and other matters beyond sexual function.

I ask because I've found that Zoladex seems to reduce both outright strength and also endurance and while there are ways to help counter its effects, there seems to be a ceiling that can't be broken through, while you're on it and maybe for some time after you've stopped taking it.

Overall, is it possible to give us an idea of what comes back and when, beyond the questionable joy of having BO return 😀?

 

Dave,

you've been through a similar process, though it's a bit longer since you finished your HT. Do you have any thoughts on notable features of physiological recovery from your experience?

 

Jules

 

User
Posted 31 Dec 2021 at 12:06
Good news Andy although I imagined you to have an impressive Poirot style 'tache 🥸
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jan 2022 at 01:07

Hi Jules, I can't really say much about physiology. To tell the truth health and fitness has never interested me. I am lucky that I have always been able to do any physical activity I have wanted to do to the level that I wanted to do it (the advantage of having low expectations and no sense of competitiveness). At work I occasionally found myself moving heavy boxes say 20kg up and down stairs, before treatment I could have probably done that 10 times in an hour. Now I think I could do it five times in half an hour, but then I would have to stop for a half hour rest before continuing. Before treatment I and a friend would walk to a pub and back about 1.5 miles each way on the flat at a brisk pace. We still do that but at the end I feel a bit more tired than before. I think a lot of this is just not getting out as much due to COVID, and now being 57 rather than 53.

Dave

User
Posted 01 Jan 2022 at 01:38

Hello Jules,

I think I've been very lucky with the Zoladex side effects. I didn't get hot flushes (beyond the very occasional night sweat). I didn't get significant fatigue, possibly because I exercise a lot (I'm a cyclist, but I also do 3 exercise sessions a week on Zoom). I have lost muscle and gained fat and put on about 5kg weight, and there's no recovery in that yet, but I suspect that can't even start until my testosterone is back to normal. My power output as a cyclist is reduced, but still respectable. Exercise has waned in the last couple of months because I've been helping a family member move home, but I hope to pick it up in the new year now that's complete. I also measure my blood glucose level monthly - this increased when I started Zoladex (although still in normal range) and it looks like it's gone back down now, although not enough measurements yet to be sure it's a real trend and not a blip.

Since you mention BO, it's return has been intermittent, but most of the time, it's still missing. I do wonder if I could get daily Testosterone levels if I might find it's bouncing all over the place on a daily basis, although the trend is upwards.

If you are having Testosterone measured, it does vary a lot during the day, so it is ideally measured as a fasting test first thing in the morning (i.e. before you eat) to get consistency, which is what I've done.

Edited by member 01 Jan 2022 at 01:40  | Reason: Not specified

 
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