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Frequency of Psa tests??

User
Posted 18 Oct 2014 at 15:41
Hi, Dad is coming to the end of his 2 year stampede trial. we have been thoroughly supported with 4 weekly Psa and onco review. Sadly bone mets have recently been diagnosed and Psa on the rise so casodex added. As a family we are so worried about now dropping to 3/4 monthly appointments as we have been so used to a monthly review?? What is the standard time between appointments for most people. Also casodex added when Psa was 7.4 a month later it dropped to 6.4 then 4 weeks later back up to 7.3?? Does this mean it's not worked ?? How long does it take to be effective ???

User
Posted 18 Oct 2014 at 21:13

I can only tell you the PSA testing regime post RRP, maybe this may help as a guide? I don't know.

Post RRP I was tested every 3 months for the first year. If all those are okay, the second year I will be tested every 6 months.

Just had my first 6 month test. It was okay.

If the next test in 6 months is okay I will go to annual testing, like everyone else.

I hope that you get enough tests to reassure you all?

Dave

User
Posted 18 Oct 2014 at 22:08

Joanne,
It does take some time for HT to start to work. I understand that it is usual for PSA tests to be every 3 months, then when it is stabalised it depends then on your Father's Onco, some say every 6 months, whilst others say annually, one of our 'members' tries to have his blood tested every month.
If he is at all worried about his results then I would suggest that every 13 weeks is reasonable, but that is my thoughts, we all have different ideas.

All the best for you, your Father and your Family.

Chris.

User
Posted 19 Oct 2014 at 03:25

Jo, is dad still taking another hormone with the casodex? The fact that he now has bone mets and the added casodex is still relatively new I would not be happy waiting 3 months. Did the onco say whether dad was staying on his books even though the trial has ended or will he be transferred to a new onco? I would ask the GP to test on a monthly basis even just for the time being and request a new appointment with the onco if the next PSA shows another rise. Ask for his testosterone to be tested as well - you really need to know whether dad is at or under castrate level.

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

User
Posted 19 Oct 2014 at 12:23
Thankyou, yes dad is on prostap 3 monthly he is staying with onco and he has one more stampede to do and then it's done, we are yet to be told if he is staying in the monthly zolenderic acid as that was part of stampede, Dad is really well and apart from tiredness Dosent have any pains or signs of anything, so I'm very grateful, I understand about the testosterone feeding cancer but surely of Psa is rising he is not at castrate level??? Is the level expected to be zero???
User
Posted 19 Oct 2014 at 14:36

Joanne,
There is no such PSA reading as zero, unfortunately, but we try to keep as low as possible, mine has been 'below 0.1' for the past period, mine hasn't spread but won't go away ! Intermittent HT is what I'm doing now. I don't know about the testosterone readings, although I should, but that is the one you want as zero. [perhaps Lyn will come back on that]

Anything can make the PSA rise, we don't always know why.


Hope that helps.

Chris.

User
Posted 19 Oct 2014 at 14:54

Castrate level is a testosterone reading of 0.69 or less so dad's T level is important. If his PSA is rising (or not dropping low enough) and cancer is on the move then either a) the hormones are not working and a change to a different one might slow it down again or b) the cancer has learnt to survive without testosterone. In other words, if he is not at castrate level, they could try another hormone to get his T down whereas if he is at or below castrate then it may be time to try an alternative treatment regime completely.

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

User
Posted 19 Oct 2014 at 18:46

Jo,

 

You wrote "  What is the standard time between appointments for most people. Also casodex added when Psa was 7.4 a month later it dropped to 6.4 then 4 weeks later back up to 7.3?? Does this mean it's not worked ?? How long does it take to be effective ???"

 

They usually allow about two or three months to judge full effectiveness of adding Casodex.

 Casodex is withdrawn on a continuous rising psa to see if there is an anti-androgen withdrawal reaction (AAWR ). 

Three monthly clinics are usual unless psa is behaving badly. Or symptoms worsen which doesn't sound to be the case.

Adding Casodex can raise testosterone level slightly as it blocks it. Therefore more swills around the bloodstream for some men. The psa results are your best guide as to what is happening. If psa continues to rise then either another second-line hormone treatment is tried or the Onco starts mentioning chemo. Abiraterone seems to be being used now before chemo as an example of further treatments available.

User
Posted 21 Oct 2014 at 13:53

Hi Jo,

I'm a firm believer in having regular PSA tests. At the beginning of my journey (2005 - 2007) I was on three-monthly Zoladex injections which together with RT worked well in bringing down my high PSA (182) to.01.
Mind you that took about 18 months to get so low. During that period I was happy with 3-monthly testing.

However, once I quit treatment, and went 'intermittent' I felt it was vital to keep a close eye on my PSA.
There was no way I wanted to wait three months to see what was happening with it.

A wise old member of these forums once said 'Too much can happen in three months'.

Since 2007 I have managed to get monthly tests, using my oncologist for one, my uro department for another, and my GP for the third over 12 week periods.

I realise not everyone has two consultants, but can I suggest that if your dad gets his GP to give him a PSa/Testosterone/Bone Profile etc. blood request form mid way between his hospital appointments then at least he will have up to date results every six weeks.

I think it's very important that he is pro-active in his treatment. Having such regular tests means he can ask for action immediately should he see any alarming rises.

He should find that his GP is very understanding about his concerns over waiting too long between tests.


Hope this helps,

George

 
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