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psa rising after prostatectomy

User
Posted 20 Apr 2015 at 19:01
My husband had a,radical prostatectomy in January 2014. Cancer was confined to prostate no spread and with good margins. Post op psa was 0.01, then 0.05 today we have been told its 0.08. Does this look as,if its a,recurrence and would you think it means,he would need radiotherapy. We were told today that psa can fluctuate and its still undetectable so not to worry and its will be looked at at next appointment. Any advice appreciated. Thank you
User
Posted 22 Apr 2015 at 23:20

Surely it’s important that folk are allowed to share their experiences on this site whether other users like it not. It’s what happened to them after all. It’s not for us to judge whether we like what they say or not. If we feel a post is incorrect then rather than us users making a judgement whether to criticise the person (directly or indirectly) who has posted in good faith, we should leave it to the moderators to decide whether a post should be picked up on or not for its content. We can even report a post to the moderators if we feel that strongly about it. Criticising someone’s post, which was made in good faith, could deter that person from posting information in future that could be helpful to others or result in that person giving up on the forum as a helpful tool to contact others going through a similar ordeal. We should be encouraging each other not criticising each other.

Apologies Alidee for bringing this up on your post ……… but I believe that everyone who has posted about their experiences on your post have done so in good faith and have described their own personal experiences and us users are mature enough to decide what is helpful and what is not.

Welcome to the forum ……. You will find lots of useful advice here and in addition there are many other support tools available to you. If you haven’t got the details of these already then please ask.

Take good care and please keep us all up to date on how it goes with your man. The experiences of others helps us all to understand a bit better what is happening to us in our individual experiences and helps us not to feel so alone in what we are going through.

dl

User
Posted 20 Apr 2015 at 21:57
My prostatectomy was in July 2014. My PSA was 0.104, 0.083, 0.075 and then rose to 0.081. My urologist expected it to be below 0.03 and I agreed to start RT on January 26 every day for 6.5 weeks ( I had 33 sessions of 2 Gray ). I had a PSA test 2 weeks ago and it had dropped to 0.061 but the cancer nurse specialist said it was a bit early for a true result as the RT takes time to show. Next test is in July

I read various studies about RT after a prostatectomy and rising PSA and decided that was the route I wanted to follow. I don't want to sound alarmist but I didn't want to hang around and take any risks after having gone through the RP

Best wishes

Guy

User
Posted 21 Apr 2015 at 00:57

Do you know, sometimes I wonder if we think about the impact of what we are saying? This is the first time Alidee has posted, we don't know very much at all about the diagnosis, age, pathology reports .... we do know that the urologist is happy with the PSA score and comfortable waiting 6 months before reviewing. Nor do we know anything about which hospital it is or what the tolerance zone is for their machines. It is entirely possible that the 0.01 was taken at the hospital and the 0.05 / 0.08 were done at the GP surgery. What is achieved by scaring someone who will then have to wait 5 months or so before they can do anything more?

Alidee, the general principle is that if the PSA rises to 0.2 or above - or there are three successive rises (all tested in the same lab) - then this is deemed a chemical recurrence and thought needs to be given to salvage treatment (if available / appropriate). As your OH would have to see an increase of 150% to reach 0.2 and you have only had two apparent rises (if indeed the tests were all done in the same lab), it isn't certain yet that there is any reason to be concerned. If the next test shows another rise then it will be important to talk to the specialist about possible next steps. It is just as possible that the next test will show a drop back down to the 0.04 - 0.05 range and they will just continue to monitor. My husband's PSA seems to have settled around the 0.04 mark which as you rightly say is undetectable

Edited by member 21 Apr 2015 at 02:35  | Reason: Not specified

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

User
Posted 21 Apr 2015 at 08:30

Originally Posted by: Online Community Member
My husband had a,radical prostatectomy in January 2014. Cancer was confined to prostate no spread and with good margins. Post op psa was 0.01, then 0.05 today we have been told its 0.08. Does this look as,if its a,recurrence and would you think it means,he would need radiotherapy. We were told today that psa can fluctuate and its still undetectable so not to worry and its will be looked at at next appointment. Any advice appreciated. Thank you

 

Alidee, going back to your OP, it may reassure you if I give my PSA readings since RRP May 2013, and say that they are giving me no cause for concern at this stage.

started at Jun13<0.003 undetectable,

Oct13<0.05 undetectable,

Jan14<0.05 undetectable,

Apr14 <0.01 undetectable,*

Oct14 0.1 normal,

Mar15 0.1 normal.**

At the April 2014* results reading the Doctor I met with told me that my reading had gone up to 0.01, IE No longer undetectable, and when I explained that I was naturally concerned and asked for further treatment as there was a measurable rise, he told me that "You don't need to jump off a bridge"?  Maybe it was his way of dealing with his stress in the situation, but what a peculiar comment to make? 

A letter to my GP confirmed that the reading was in fact less than 0.01.

**The second test within 6 months in year 2 is due to my changing GP surgery and the new GP wanting their own set of figures to work from tested on their own lab's machine.

With your readings it seems perfectly normal to me that the GPs follow the generally accepted regular PSA testing regime, and that is 3 monthly in the first 12 months following the op, 6 months in the second 12 months, annually thereafter. All assuming that there are no worrying figures.  I am not surprised that you are being tested as you are.

If you are worried why not make an appointment to see your GP and ask for another test and explanation about how they do testing and what figures they regard as normal?

And finally, generally we are all in a similar situation, have all been through similar moments, but our prognosis will be determined by our body and is in the hands of professionals to manage.  There will come a point where you realise that you have to live with some uncertainty and not worry so much about tomorrow that you forget to enjoy today. 

Lynn makes good points. she generally does.  Do you have the path results and updated staging etc?

Brian may be surprised at your testing frequency, that is his opinion, not his experience, your testing frequency seems absolutely normal to me given your results.  

atb

dave

 

User
Posted 21 Apr 2015 at 19:43

I watched the film in that link and I saw an explanation about the whole PSA reading issue, not just the < symbol. I picked up on that I will be asking about having a super sensitive test at some time in the near future.

Rather than keeping on guessing at Alidee's OH's situation why not just wait until more information about all the PSA tests is forthcoming?

Regardless of how often he was checked in that first year the test results speak for themselves, his readings are comfortably low, taking the information from that link. IIWM I would not be worrying.

Brian, you always worry! :-)

atb to Alidee and their OH.

dave

User
Posted 20 Apr 2015 at 20:17

Hi, all those figures are so low as to be undetectable as far as I am aware.  I understand that any fluctuation,especially a rise, can cause worry, but you are still getting a 0 after the decimal place.  Variations can be due to a different machine being used to do measure his test sample.  And also different sensitivity of test carried out by different labs.

How often is he being tested?  When is his next test due?

dave

 

 

User
Posted 20 Apr 2015 at 23:09

Sensitive tests can cause anxiety. However, they can also pick up on activity earlier. My PSA rose after my RP albeit faster than your OH. When it reached 0.087 they decided on RT.

As Dave says there can be fluctuations in PSA but the last two tests have shown a steady increase. I'm surprised they are waiting 6 months to test his PSA again.

Bri

User
Posted 21 Apr 2015 at 06:37

Lyn alidee obviously does not feel comforted by the Urologists words which is why she has posted on here.

I certainly wasn't using scare tatics but sharing my experience which is what the forum is about.

Bri

User
Posted 21 Apr 2015 at 12:57
Hi Alidee

This link may help explain the complexity of PSA readings.

https://askdrmyers.wordpress.com/2015/03/10/confusing-prostate-cancer-terms/

Roy

User
Posted 21 Apr 2015 at 17:21
Hi Alidee

I didn't want to alarm you and appreciate Lynn's comments as a very respected and valued contributor on this site. Everyone is different. I decided to find out as much as I could about my options - I read Dr Patrick Walsh's book " Guide to surviving prostate cancer" bought through Amazon and read numerous studies on the Internet, the one I found most helpful was www.PCRI.org. PCRI insights by Nathan Roundy.

I have found this forum here incredibly useful - everyone is very supportive and it helps to hear others experiences iNcluding those that are not reflective of one' own condition. I'm not suggesting you do as I did, just trying to give you a different view

I hope this might help and the best of luck going forward

Guy

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User
Posted 20 Apr 2015 at 20:17

Hi, all those figures are so low as to be undetectable as far as I am aware.  I understand that any fluctuation,especially a rise, can cause worry, but you are still getting a 0 after the decimal place.  Variations can be due to a different machine being used to do measure his test sample.  And also different sensitivity of test carried out by different labs.

How often is he being tested?  When is his next test due?

dave

 

 

User
Posted 20 Apr 2015 at 20:28
Hi Dave thanks for your reply. I just panic at any little rise although hubby is so calm. He is being tested 6 monthly now as they're not concerned. So hopefully next one wont have risen. I think these ultrasensitive tests can cause more anxiety as I've heard others say too. Again thank you
User
Posted 20 Apr 2015 at 21:57
My prostatectomy was in July 2014. My PSA was 0.104, 0.083, 0.075 and then rose to 0.081. My urologist expected it to be below 0.03 and I agreed to start RT on January 26 every day for 6.5 weeks ( I had 33 sessions of 2 Gray ). I had a PSA test 2 weeks ago and it had dropped to 0.061 but the cancer nurse specialist said it was a bit early for a true result as the RT takes time to show. Next test is in July

I read various studies about RT after a prostatectomy and rising PSA and decided that was the route I wanted to follow. I don't want to sound alarmist but I didn't want to hang around and take any risks after having gone through the RP

Best wishes

Guy

User
Posted 20 Apr 2015 at 23:09

Sensitive tests can cause anxiety. However, they can also pick up on activity earlier. My PSA rose after my RP albeit faster than your OH. When it reached 0.087 they decided on RT.

As Dave says there can be fluctuations in PSA but the last two tests have shown a steady increase. I'm surprised they are waiting 6 months to test his PSA again.

Bri

User
Posted 21 Apr 2015 at 00:57

Do you know, sometimes I wonder if we think about the impact of what we are saying? This is the first time Alidee has posted, we don't know very much at all about the diagnosis, age, pathology reports .... we do know that the urologist is happy with the PSA score and comfortable waiting 6 months before reviewing. Nor do we know anything about which hospital it is or what the tolerance zone is for their machines. It is entirely possible that the 0.01 was taken at the hospital and the 0.05 / 0.08 were done at the GP surgery. What is achieved by scaring someone who will then have to wait 5 months or so before they can do anything more?

Alidee, the general principle is that if the PSA rises to 0.2 or above - or there are three successive rises (all tested in the same lab) - then this is deemed a chemical recurrence and thought needs to be given to salvage treatment (if available / appropriate). As your OH would have to see an increase of 150% to reach 0.2 and you have only had two apparent rises (if indeed the tests were all done in the same lab), it isn't certain yet that there is any reason to be concerned. If the next test shows another rise then it will be important to talk to the specialist about possible next steps. It is just as possible that the next test will show a drop back down to the 0.04 - 0.05 range and they will just continue to monitor. My husband's PSA seems to have settled around the 0.04 mark which as you rightly say is undetectable

Edited by member 21 Apr 2015 at 02:35  | Reason: Not specified

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

User
Posted 21 Apr 2015 at 06:37

Lyn alidee obviously does not feel comforted by the Urologists words which is why she has posted on here.

I certainly wasn't using scare tatics but sharing my experience which is what the forum is about.

Bri

User
Posted 21 Apr 2015 at 08:30

Originally Posted by: Online Community Member
My husband had a,radical prostatectomy in January 2014. Cancer was confined to prostate no spread and with good margins. Post op psa was 0.01, then 0.05 today we have been told its 0.08. Does this look as,if its a,recurrence and would you think it means,he would need radiotherapy. We were told today that psa can fluctuate and its still undetectable so not to worry and its will be looked at at next appointment. Any advice appreciated. Thank you

 

Alidee, going back to your OP, it may reassure you if I give my PSA readings since RRP May 2013, and say that they are giving me no cause for concern at this stage.

started at Jun13<0.003 undetectable,

Oct13<0.05 undetectable,

Jan14<0.05 undetectable,

Apr14 <0.01 undetectable,*

Oct14 0.1 normal,

Mar15 0.1 normal.**

At the April 2014* results reading the Doctor I met with told me that my reading had gone up to 0.01, IE No longer undetectable, and when I explained that I was naturally concerned and asked for further treatment as there was a measurable rise, he told me that "You don't need to jump off a bridge"?  Maybe it was his way of dealing with his stress in the situation, but what a peculiar comment to make? 

A letter to my GP confirmed that the reading was in fact less than 0.01.

**The second test within 6 months in year 2 is due to my changing GP surgery and the new GP wanting their own set of figures to work from tested on their own lab's machine.

With your readings it seems perfectly normal to me that the GPs follow the generally accepted regular PSA testing regime, and that is 3 monthly in the first 12 months following the op, 6 months in the second 12 months, annually thereafter. All assuming that there are no worrying figures.  I am not surprised that you are being tested as you are.

If you are worried why not make an appointment to see your GP and ask for another test and explanation about how they do testing and what figures they regard as normal?

And finally, generally we are all in a similar situation, have all been through similar moments, but our prognosis will be determined by our body and is in the hands of professionals to manage.  There will come a point where you realise that you have to live with some uncertainty and not worry so much about tomorrow that you forget to enjoy today. 

Lynn makes good points. she generally does.  Do you have the path results and updated staging etc?

Brian may be surprised at your testing frequency, that is his opinion, not his experience, your testing frequency seems absolutely normal to me given your results.  

atb

dave

 

User
Posted 21 Apr 2015 at 11:18
I'd just like to thank you all for your replies and words of wisdom. It is much appreciated and good to hear from people who are going through the same experiences. I'm maybe being a little over anxious , I've just recently retired from my post of ot assistant working on the wards at a cancer centre. Seeing advanced extreme cases has probably made me a bit neurotic. Even though we were told my hubbys was caught early, contained and he had the 'gold star treatment' as they put it (prostatectomy) I still worry as I sure everyone does. I've updated my profile with a bit of background. Once again thank you
User
Posted 21 Apr 2015 at 12:57
Hi Alidee

This link may help explain the complexity of PSA readings.

https://askdrmyers.wordpress.com/2015/03/10/confusing-prostate-cancer-terms/

Roy

User
Posted 21 Apr 2015 at 17:21
Hi Alidee

I didn't want to alarm you and appreciate Lynn's comments as a very respected and valued contributor on this site. Everyone is different. I decided to find out as much as I could about my options - I read Dr Patrick Walsh's book " Guide to surviving prostate cancer" bought through Amazon and read numerous studies on the Internet, the one I found most helpful was www.PCRI.org. PCRI insights by Nathan Roundy.

I have found this forum here incredibly useful - everyone is very supportive and it helps to hear others experiences iNcluding those that are not reflective of one' own condition. I'm not suggesting you do as I did, just trying to give you a different view

I hope this might help and the best of luck going forward

Guy

User
Posted 21 Apr 2015 at 17:41
Quote:
With your readings it seems perfectly normal to me that the GPs follow the generally accepted regular PSA testing regime, and that is 3 monthly in the first 12 months following the op, 6 months in the second 12 months, annually thereafter. All assuming that there are no worrying figures. I am not surprised that you are being tested as you are.

If you are worried why not make an appointment to see your GP and ask for another test and explanation about how they do testing and what figures they regard as normal?

Brian may be surprised at your testing frequency, that is his opinion, not his experience, your testing frequency seems absolutely normal to me given your results.

atb

dave

According to Alidees info he has had 6 monthly testing from the start if they are the only three PSA results.

My post was based upon my experience as I said in my reply to Lyn. I was told if there was an increase they would test 3 months later. Sorry Dave but if he has had 6 monthly tests from the start that doesn't sound right to me

Sorry Alidee you do need to be guided by your medics but if you feel uncomfortable with any treatment plan etc speak to your GP. I think,in my opinion and experience, we have to be proactive.

Bri

Edited by member 21 Apr 2015 at 18:49  | Reason: Not specified

User
Posted 21 Apr 2015 at 19:00
Originally Posted by: Online Community Member
Hi Alidee

This link may help explain the complexity of PSA readings.

https://askdrmyers.wordpress.com/2015/03/10/confusing-prostate-cancer-terms/

Roy

Good link Roy but he is focusing on the < less than symbol which has caused some angst for men in the past.

Bri

User
Posted 21 Apr 2015 at 19:43

I watched the film in that link and I saw an explanation about the whole PSA reading issue, not just the < symbol. I picked up on that I will be asking about having a super sensitive test at some time in the near future.

Rather than keeping on guessing at Alidee's OH's situation why not just wait until more information about all the PSA tests is forthcoming?

Regardless of how often he was checked in that first year the test results speak for themselves, his readings are comfortably low, taking the information from that link. IIWM I would not be worrying.

Brian, you always worry! :-)

atb to Alidee and their OH.

dave

User
Posted 21 Apr 2015 at 20:53

I'll say no more as no point

User
Posted 22 Apr 2015 at 23:20

Surely it’s important that folk are allowed to share their experiences on this site whether other users like it not. It’s what happened to them after all. It’s not for us to judge whether we like what they say or not. If we feel a post is incorrect then rather than us users making a judgement whether to criticise the person (directly or indirectly) who has posted in good faith, we should leave it to the moderators to decide whether a post should be picked up on or not for its content. We can even report a post to the moderators if we feel that strongly about it. Criticising someone’s post, which was made in good faith, could deter that person from posting information in future that could be helpful to others or result in that person giving up on the forum as a helpful tool to contact others going through a similar ordeal. We should be encouraging each other not criticising each other.

Apologies Alidee for bringing this up on your post ……… but I believe that everyone who has posted about their experiences on your post have done so in good faith and have described their own personal experiences and us users are mature enough to decide what is helpful and what is not.

Welcome to the forum ……. You will find lots of useful advice here and in addition there are many other support tools available to you. If you haven’t got the details of these already then please ask.

Take good care and please keep us all up to date on how it goes with your man. The experiences of others helps us all to understand a bit better what is happening to us in our individual experiences and helps us not to feel so alone in what we are going through.

dl

User
Posted 23 Apr 2015 at 17:44

any more information, stats or figures Alidee?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 24 Apr 2015 at 08:37
Hi Dave. When I checked back his first 2 post op PSA's were 0.01 . I've updated my profile with some background information. I've also spoken to pcuk specialist nurse on the helpline. She was really helpful and we're going to ask for another test in 3 months. She said if it happens that they decide he needs radiotherapy due to some cells left behind they are usually in the prostate bed and it would still be curative. I said I was worried they might have travelled to more distant sites, she said that was unlikely with his pre op PSA etc. I just hoped that when we were told they had got it all out with good margins it had gone. Although I know its always in the back of your mind and as I've said my experiences in my job doesn't help. I'm grateful to everyone for their wise words and i didn't want to cause any upset between you members who have been here alot longer than me. Once again thanks. Its good to talk !
User
Posted 24 Apr 2015 at 12:56

Hi Alidee,

Were all the tests carried out by the same laboratory, and super sensitive or otherwise, do you know?

I have no vast knowledge or experience of PCa medical procedures, well not yet anyway, just the daVinci! Go by what your experts say but never be afraid to ask why or how or for more information.

atb for the weekend

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 24 Apr 2015 at 13:02
Hi Dave. The test before this one was done by Gp. The rest at hospital. Thanks for your reply. Have a good weekend
User
Posted 19 Sep 2016 at 16:55

Hi Alidee

 

 

Everyone is different. I had a radical 5 years ago and had positive margins. I was undetectable for 4 years and then got a 0.04 followed after 3 months with a 0.06. My next test in three months time will determine whether I have radiotherapy or not. If it increases again I guess I will have to have rad. I don't think this is a perfect science. I don't know why I have been undetectable for 4 years and then have had an increase to 0.04. It's all below 0.1 so I'm not getting too worried. On the other hand even if there has been a recurrence I'd like to think that a blast of rad. would eliminate any outstanding cancer cells. Who knows?  You can get obsessed with PSA results. My specialist tells me that scans wouldn't show up anything so I'm content to believe that the disease has not spread and remains local. This being the case there is probably light at the end of the tunnel so there is absolutely no point in spending your life in a state of anxiety  - easier said than done of course!!!

 

GARRARD

 
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