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PSA has risen again ??

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User
Posted 24 Mar 2016 at 07:29
My OH had his three months appointment with the urologist today. His PSA has risen again. 0.01 for 6 months then at 9 months 0.04 then today at 12 months after radical prostatectomy 0.08. The doctor is surprised because OH had a very positive histology and negative margins . Today he said we could go for RT or have a special scan ( not sure what it is called ) but it a lot more precise in picking up lesions than a CAT scan although he thought there was no benefit into rushing into either at this stage. I am starting to think treatment will be our path rather than cure. Has anyone any experience with a post operative PSA rising and then evening out. I was not so impressed with the doctor today as he seemed to not want to give a view . He kept saying everyone is different and it is for us to make a decsion. Anyway I think we are going to wait until next check then decide . We have a holiday to Tibet in May and it is my last day of work next Thursday as I am retiring after 20 years working in child protection. I feel sad and worried but at the same time blessed that we are still here and enjoying our family. Cheers. Georgina

Edited by member 09 Jun 2016 at 08:49  | Reason: Not specified

User
Posted 24 Mar 2016 at 09:20

Must be a worrying time for you Grea ,Both of you enjoy your holiday in Tibet and your retirement I have just decided to retire early from work last Thursday after a lot of soul searching . all the best Andy

User
Posted 24 Mar 2016 at 10:13

Originally Posted by: Online Community Member
I am starting to think treatment will be our path rather than cure. 

Grea

Did you see the post from Bri a couple of days ago ? that looks more than just treatment, well I hope it because  I could be heading that way myself. I know there are members on here where Surgery and RT has not had the desired effect, but I am staying positive. I had positive margins and was given a 30% chance of recurrence. My PSA was 0.03 for twelve months everyone was pleased and optimistic, then at 18 months it was 0.06 a couple of 0.04 and 0.05 in between now at 23 months 0.07. My consultant told me he has many patients who rise to 0.1 then stop. I would be referred back to the consultant at 0.1.

Thanks Chris

User
Posted 24 Mar 2016 at 10:27

Grea, I didn't know you worked in CP - that's a tougher call in Australia than it is here. We must share and discuss some time.

John has been right where you are, as has Bri. In Bri's case, he decided to get on with it but in our case, John didn't really believe it so we held firm until it got up to .15 and then he finally agreed to the HT/RT - in our case, that was 2 years and 5 months post op. My dad's post-op PSA is now over 0.2 but he has decided not to do anything yet ... too many plans and jobs to do!

I know it must be frustrating to have seen a doctor who didn't really give a view but I think he was telling you the truth; the man has to decide whether to wait and see a bit longer or whether to go 'belts & braces'. Our uro was the opposite to yours, told John at just about every 3 month review the PSA was going the wrong way and salvage treatment was probably needed but J simply wasn't ready to hear it.

Presumably they were suggesting the salvage RT would be accompanied by HT? Did they indicate how long that would be for?

In the UK, they don't say there has been a chemical recurrence until the PSA reaches 0.2 or there have been three successive rises. Your husband is still below the threshold for 'undetectable' and may just be settling in to his natural level. He might not need salvage treatment at all - I think waiting to see what the next test and the one after that brings is probably very sensible.

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

User
Posted 24 Mar 2016 at 11:25

These tiny numbers cause so much angst. It was probably easier in the days before supersensitive testing when all anyone got told was 'it's less than 0.1'

We would all have celebrated 'less than' rather than begin to live in fear of the next test, and the next test, and the next test. Methinks that the hospitals who still only offer PSA to 1 decimal point may be absolutely right!

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

User
Posted 25 Mar 2016 at 10:16

Hi
As Lyn says I got on with the RT treatment. My PSA rose quicker as it hit 0.087 5 months after my op although my starting PSA was higher at 0.06 post op.

My oncologist recommended we went for RT at that point which I wasn't going to argue with. Some people felt I maybe should have waited a bit longer to see what happened with the PSA..but I put my trust in her clinical opinion rather than non clinical people. So far it seems she was right.
But I am younger than your OH ie I was only 54 at that point.

Whatever options you choose I wish you all the best

Bri x

User
Posted 25 Mar 2016 at 11:23

That's a good point Bri - Grea, it took my dad's PSA 13 years to rise above 0.1 so now it is his assessment that it would take about 20 years to get to 20. Based on the current doubling time, the onco's estimate was that it could be 20 years before he became terminal and since dad is now 78, he is happy to just keep an eye on it for now rather than have any more treatment.

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

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User
Posted 24 Mar 2016 at 09:20

Must be a worrying time for you Grea ,Both of you enjoy your holiday in Tibet and your retirement I have just decided to retire early from work last Thursday after a lot of soul searching . all the best Andy

User
Posted 24 Mar 2016 at 10:13

Originally Posted by: Online Community Member
I am starting to think treatment will be our path rather than cure. 

Grea

Did you see the post from Bri a couple of days ago ? that looks more than just treatment, well I hope it because  I could be heading that way myself. I know there are members on here where Surgery and RT has not had the desired effect, but I am staying positive. I had positive margins and was given a 30% chance of recurrence. My PSA was 0.03 for twelve months everyone was pleased and optimistic, then at 18 months it was 0.06 a couple of 0.04 and 0.05 in between now at 23 months 0.07. My consultant told me he has many patients who rise to 0.1 then stop. I would be referred back to the consultant at 0.1.

Thanks Chris

User
Posted 24 Mar 2016 at 10:27

Grea, I didn't know you worked in CP - that's a tougher call in Australia than it is here. We must share and discuss some time.

John has been right where you are, as has Bri. In Bri's case, he decided to get on with it but in our case, John didn't really believe it so we held firm until it got up to .15 and then he finally agreed to the HT/RT - in our case, that was 2 years and 5 months post op. My dad's post-op PSA is now over 0.2 but he has decided not to do anything yet ... too many plans and jobs to do!

I know it must be frustrating to have seen a doctor who didn't really give a view but I think he was telling you the truth; the man has to decide whether to wait and see a bit longer or whether to go 'belts & braces'. Our uro was the opposite to yours, told John at just about every 3 month review the PSA was going the wrong way and salvage treatment was probably needed but J simply wasn't ready to hear it.

Presumably they were suggesting the salvage RT would be accompanied by HT? Did they indicate how long that would be for?

In the UK, they don't say there has been a chemical recurrence until the PSA reaches 0.2 or there have been three successive rises. Your husband is still below the threshold for 'undetectable' and may just be settling in to his natural level. He might not need salvage treatment at all - I think waiting to see what the next test and the one after that brings is probably very sensible.

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

User
Posted 24 Mar 2016 at 10:45
Hi Lynn,

That's a little reassuring for us.

Post op 2yrs at the end of next month.Last psa was 0.08.Sees consultant next month so I suppose we will know more then. He did say that this happens and sometimes it levels off.Histology was good.

I don't really want to go down the RT route.😦

User
Posted 24 Mar 2016 at 11:25

These tiny numbers cause so much angst. It was probably easier in the days before supersensitive testing when all anyone got told was 'it's less than 0.1'

We would all have celebrated 'less than' rather than begin to live in fear of the next test, and the next test, and the next test. Methinks that the hospitals who still only offer PSA to 1 decimal point may be absolutely right!

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

User
Posted 24 Mar 2016 at 11:45
Yes,probably!

Ever the pessimist, I am gearing up for radiotherapy.

I don't think that Sean has given it much thought,but I shall have to broach the subject before his next consult,in case they say it's radiotherapy.

User
Posted 24 Mar 2016 at 23:21

Thanks for these posts they are reassuring . I agree Lyn, I would love to have been celebrating rather than worrying the past 3 months. The test this time although yet higher was not as distressing for me as the first rise. I was too complacent and thought with the op and great histology we were out of trouble. One thing the urologist said that was reassuring was that Erwell will not die of prostate cancer . A bit of a call but I suppose he is already 74 and a long way down the line even if it is the treatment road.
Cheers to all. Enjoy the summer while we snuggle up for the cold...

User
Posted 25 Mar 2016 at 10:16

Hi
As Lyn says I got on with the RT treatment. My PSA rose quicker as it hit 0.087 5 months after my op although my starting PSA was higher at 0.06 post op.

My oncologist recommended we went for RT at that point which I wasn't going to argue with. Some people felt I maybe should have waited a bit longer to see what happened with the PSA..but I put my trust in her clinical opinion rather than non clinical people. So far it seems she was right.
But I am younger than your OH ie I was only 54 at that point.

Whatever options you choose I wish you all the best

Bri x

User
Posted 25 Mar 2016 at 11:23

That's a good point Bri - Grea, it took my dad's PSA 13 years to rise above 0.1 so now it is his assessment that it would take about 20 years to get to 20. Based on the current doubling time, the onco's estimate was that it could be 20 years before he became terminal and since dad is now 78, he is happy to just keep an eye on it for now rather than have any more treatment.

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

 
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