External Beam RT and HDR Brachytherapy - my path

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).

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.

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

Cheers,

Chris

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. 

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.

Me too ✋

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

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.