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mission for psa results

User
Posted 12 Dec 2020 at 14:42

hi, it took me 3 days to find out the score for my 6 monthly checkup by phone could not get through for 3 days,and then hanging on the phone for 1/2 hour,it was a mission,finally got results 0.03 test 0,finished zoladex 2016,just after starting radiotherapy onco said he was going for cure,how am i supposed to know if i have got no testosterone,gp referred me to endocrinologist,but he said not a good idea for any test,its ok to say that he is not skin and bone with no test,i think i will get in touch with onco who treated me see what he says,anyone any thoughts on this,thanks.

User
Posted 12 Dec 2020 at 21:27

Hi Michael I had similar problems this time getting my blood test results.

I usually ring Urologists Dept and they advise, this time couldn't get anyone to answer the phone so I rang my Oncologists Secretary who told me.

I've now got her direct line so I'll go straight to her next time.

Some guys get the results from their GPs surgery but ours are completely useless.

User
Posted 12 Dec 2020 at 21:58
Radar, you are worrying unnecessarily I think. If your PSA is still 0.03 then it doesn't really matter about the testosterone - if there was any cancer left lying around it isn't active.

I know that you would like to get your testosterone level up and put more weight on but apart from eating more or taking in protein shakes, I am not sure there is anything else you can do.

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

User
Posted 13 Dec 2020 at 10:47

I can't tell if you've actually had a testosterone test. You can ask your GP for one.

At several of my hormone therapy talks, I've actually had clinicians ask me my view on TRT (Testosterone Replacement Therapy) after prostate cancer, and I have also discussed it with a couple of England's top urologists at a conference.

There is a big reluctance to prescribe TRT to prostate cancer patients in remission, for fear it may make their prostate cancer come back. My view is that we do time limited HT to improve the cure rate, but it's time limited because it has big QoL issues of its own, so we don't make patients stay on it. Doing so might reduce recurrence rates a bit, but would increase other cause deaths and significantly reduce QoL.

When a patient in remission who has lost their natural testosterone is refused TRT, they are in effect being forced to stay on HT, just as I said we don't do above for very logical reasons. Hence, this is illogical - they've been cured of PCa, only to live a lower QoL and probably die of something else earlier than they would have done.

This is the argument I use with clinicians. It's interesting - CNS's get it immediately and agree with me. Many consultants don't, and just say TRT may cause the PCa to return. I will say England's top urologists did agree with me, saying there's no reason not to use TRT on someone in remission and expected to be cured.

TRT in this case needs to come with a talk on risks though. It almost certainly does increase risk of you seeing recurrence. I describe it like this... If you live long enough, your prostate cancer will almost certainly come back. Without TRT, that might be in 30 years, long after you died of something else. With TRT, it might be in 10 years, while you're still alive, just like it is for a patient in remission who still has natural testosterone. That's the risk the patient needs to understand, and providing they do, they should be in a position to give informed consent to TRT. The treatment needs to come with regular PSA and testosterone monitoring to make sure PSA is stable with testosterone level, and testosterone is not too high.

Edited by member 13 Dec 2020 at 11:01  | Reason: Not specified

User
Posted 13 Dec 2020 at 12:48
I put this to my consultants in Germany some months after RT and when my PSA was low and I understand it was referred to the dkfz, the German Cancer Research Centre. I was advised not to have TRT so didn't have it. Over time I needed further treatment anyway. I wonder had I had the TRT whether the cancer might have returned earlier or on a larger scale. Probably there has been more research on this in the interim but nothing definitive as consultants can still have opposing opinions.
Barry
User
Posted 13 Dec 2020 at 14:44
Radar and his GP have already explored the possibility of testosterone replacement but the endocrinologist ruled it out due to a range of factors. Radar has been given medical advice and is on a number of medications.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Dec 2020 at 19:25

Yes I did, sorry guys 

User
Posted 13 Dec 2020 at 20:45
thanks,yes i have had my testosterone checked everytime i have my 6monthly checkup and its always below reference limit.people who know me have said people have said to them if i was on drugs because im that thin,i wonder if its worth getting in touch with the oncologist who treated me,he might say something different to the urologist .thankyou.
 
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