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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

 
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