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Testing testosterone levels

User
Posted 07 Apr 2015 at 22:05

I''m almost three years down the road after PCa diagnosis LRP and RT but so far no hormone therapy. HT may not be far off as my PSA post salvage RT is rising.

What puzzles me is that my testosterone level has never been tested.

I imagine most of us like to think we are high in testosterone.

I did touch upon the fact that my TL was unknown but the consultant sort of brushed it aside but my concern is whether a higher TL (had that been the case) would have made it more likely the HT would have been introduced earlier.

 So  really my question is how routine is Testosterone Level testing after initial diagnosis?

 

Thanks,

Dave

 

Not "Why Me?" but "Why Not Me"?
User
Posted 07 Apr 2015 at 23:27

Dave,
From what I have found, you have to ask, some on here have the test as routine, I had to ask twice.

Chris.

User
Posted 08 Apr 2015 at 00:01

Hi Dave,
I think you have misunderstood - there is no point testing your testosterone level as you are not on HT.

The purpose of the test is to ensure that hormone treatment is working or - when it appears to be failing - to determine whether a) the HT has failed to keep the man at or below castrate level or b) the cancer has learned to live without testosterone. The next steps differ accordingly. As you are not on HT, you will not be at castrate level and your cancer has never needed to learn to live without food.

Personally, I think the bigger question in your case is why they didn't put you on HT when they decided you needed salvage RT.

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

User
Posted 08 Apr 2015 at 18:44

Hi Dave

Lyn has answered your TL question.

Regarding starting HT now it sounds to me, in my naive opinion, that your oncol is taking a considered approach. The scans will determine if there is anything happening regarding potential spread. Your PSA seems to have been pretty stable since the salvage RT. I think they will be more interested in its velocity and doubling time which at the moment doesn't seem too concerning.

Take care

Bri

User
Posted 09 Apr 2015 at 01:35

Ah sorry Dave - you posted about it at the time and I forgot!

It will be interesting to see what your onco's stance is on introducing HT as a stand alone treatment - many see a PSA of 2 as the benchmark for accepting that the cancer has not been eradicated but delay introducing HT until it reaches 10 or 20. If you ever get to thast point you could ask about intermittent HT perhaps?

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

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User
Posted 07 Apr 2015 at 23:27

Dave,
From what I have found, you have to ask, some on here have the test as routine, I had to ask twice.

Chris.

User
Posted 08 Apr 2015 at 00:01

Hi Dave,
I think you have misunderstood - there is no point testing your testosterone level as you are not on HT.

The purpose of the test is to ensure that hormone treatment is working or - when it appears to be failing - to determine whether a) the HT has failed to keep the man at or below castrate level or b) the cancer has learned to live without testosterone. The next steps differ accordingly. As you are not on HT, you will not be at castrate level and your cancer has never needed to learn to live without food.

Personally, I think the bigger question in your case is why they didn't put you on HT when they decided you needed salvage RT.

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

User
Posted 08 Apr 2015 at 18:03

Thanks Lyn.

Chris.

PS. words are better than an anonymous thumbs up!

User
Posted 08 Apr 2015 at 18:44

Hi Dave

Lyn has answered your TL question.

Regarding starting HT now it sounds to me, in my naive opinion, that your oncol is taking a considered approach. The scans will determine if there is anything happening regarding potential spread. Your PSA seems to have been pretty stable since the salvage RT. I think they will be more interested in its velocity and doubling time which at the moment doesn't seem too concerning.

Take care

Bri

User
Posted 09 Apr 2015 at 00:21

Originally Posted by: Online Community Member

Personally, I think the bigger question in your case is why they didn't put you on HT when they decided you needed salvage RT.

 

Hi Lyn,

 I can answer that one, it was due to a mis-understanding on the part of the RT Onco.

When I attended the hospital for RT I was informed that it was normal practice to include HT with RT. I was pointed out that other hospitals differ and that Addenbrooks wouldn't give HT. Whether that meant for all RT or only for salvage RT, I don't know but I have my doubts about no HT being the norm at Addenbrooks

Anyway I was quite happy to go along with the norm at my hospital, ie RT + HT.

However, I was asked  a couple of times whether I wanted to take part in the Radicals Trial. This would have consisted of one of three treatments chosen at random RT with no HT, RT with 6 months HT or RT with two years HT.

I turned down the trial, explaining that I did not with to take the 33% chance of not getting the treatment that was standard at my hospital.

At the final meeting before RT he (the RT Onco) stated that I would not be getting HT. I went along with that without querying it- after all he's the expert.

 On the first progress meeting, I did ask, "Why no HT?" He said "I thought you said you didn't want it", "No"I said, repeating my previous statement.

 "Well, it's too late now" he said, adding that because my cancer was agressive, he would certainly have put me on HT.

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 09 Apr 2015 at 01:35

Ah sorry Dave - you posted about it at the time and I forgot!

It will be interesting to see what your onco's stance is on introducing HT as a stand alone treatment - many see a PSA of 2 as the benchmark for accepting that the cancer has not been eradicated but delay introducing HT until it reaches 10 or 20. If you ever get to thast point you could ask about intermittent HT perhaps?

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

User
Posted 12 Apr 2015 at 17:17

Hi Lyn,

That's useful to know about the PSA 2 tripping point.
I'm in no hurry to go on to HT but at the same time I don't want to miss out on the normal/standard (if there is such a thing!) treatment.

We'll see what the next PSA test (due this month but delay while awaiting scan) comes up with.

I'm fortunate in that I don't have too much anxiety at PSA time - perhaps I'm in denial ! - although I found that when my results were level(-ish) I was quite happy to get them from the surgery in advance of consultation. When they started to climb, I stopped 'taking a peek in advance' My rationale being that if there was a significant rise, I'd prefer to hear about it simultaneously with 'what we can do about it' at a consultation.

Not "Why Me?" but "Why Not Me"?
 
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