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rising PSA after RP

User
Posted 22 Jun 2015 at 16:26

Hi, I was wondering if someone can help me? I had a radical prostatectomy last Sep 2014 and all is well , I have had 3 blood tests and they have all come back fine 0.03, then 0.032, then the last one 0.03, I heve been feeling under the weather so my doctor asked for anther blood test , Just to rule out any nasties, unknown to me he requested a PSA test , this one came back 0.052 which is quite a bit higher than the others, I have just had my regular 3/4 monthly blood test and I get the results in 7 days ,

 

I have be reading about the rate that your psa levels double and mine is almost there in 3 months ,,

 

am I worrying for nothing or should I have good reason to worry ?

 

M,D

User
Posted 22 Jun 2015 at 16:46

M.D

Your GP is being prudent in keeping an eye on PSA levels. I doubt if such a small increase would make you feel unwell but it could be what is making you feel unwell has also slightly raised your PSA.

One of those wait and see times.

Ray

User
Posted 23 Jun 2015 at 09:44

My apologies if this posted twice as my post went to??

Of course you’re worried but until further test results come through it’s all an unknown. Yes it could be the first rise of more to come but then it could be just a one off. Even if further tests show recurrence you are still in the curative camp albeit via further treatment most likely RT (I’m taking it you haven’t had that as well as from what I can see from your profile it doesn’t give initial diagnosis staging: PSA- Gleason - T etc )

I can only advise you leave off internet research as it’s only going to increase your concerns.

Ray

User
Posted 24 Jun 2015 at 08:33

It's not false hope, I don't think any of us here can be bothered with lying to people to make them feel better. Nor do I think our urologist would lie to us or that the oncologist on Saturday would have made it up. Look at some of our profiles - do you think you are the only person to grapple with the anxiety that ultra-sensitive tests cause? The problems of ultra-sensitive testing are one reason that some hospitals don't use them, offering PSA results only to 1 decimal point. Of course the machines are calibrated regularly but it isn't only prostate cells that produce PSA, it also comes from the adrenal gland. Women have an average PSA of 0.05 which can rise as high as 0.2 after orgasm and higher in breast milk.

Our urologist told me that if you took one blood sample and tested it in the exact same machine a number of times, the result could be anything from 0.01 - 0.05. In reality, most labs have more than one testing equipment anyway so the test from 3 months ago isn't necessarily from exactly the same machine, or the machine could have been recalibrated in between times. Or you could have been cycling or masturbated just before the second test, or have done something that stimulated your adrenal gland (been late for the appointment/found it hard to park/had a row with the boss/had to get a big piece of work completed?)

Doubling time is relevant to men with advanced PCa or whose PSA has risen over 0.1. In your situation, the significant threshold is three successive rises and/or PSA over 0.2 NOT doubling time.

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

User
Posted 24 Jun 2015 at 09:42

M.D

I’ve been around 10 years and in that time could count on at most two hands those who gave false hope. One it would be wrong and we don’t give what we wouldn’t want to receive. The viewpoints have been given to show there is an alternative reason to why the increase. As my previous post said Yes it could be recurrence or a one of? Only future test results will show that.

The waiting game: can’t think anyone here who hasn’t been and still does go through that as their own PSA fluctuates/rises. My next PSA test is soon and after all these years I still get concerned

Other glands and doubling in time info has been given by Lyn.

Do the partners know what having cancer is like? Some of course have had and still have their own cancer issues. Do they know what’s it like to have prostate cancer? Most would be the first to admit not entirely but do they suffer alongside the loved ones – oh yes.

There is the theory stress raises PSA levels – so is getting too stressed out on something you can’t change helping.

Ray

Edited by member 24 Jun 2015 at 09:47  | Reason: Not specified

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User
Posted 22 Jun 2015 at 16:46

M.D

Your GP is being prudent in keeping an eye on PSA levels. I doubt if such a small increase would make you feel unwell but it could be what is making you feel unwell has also slightly raised your PSA.

One of those wait and see times.

Ray

User
Posted 22 Jun 2015 at 20:20

Hi Ray

 

Sorry I didn't have the blood test just for my PSA it was for liver function etc he just hadded the psa with a list of many

 

MD

User
Posted 22 Jun 2015 at 21:39

I read it as GP wanting full blood tests plus to be sure a PSA test as well. It's not unusual for RP guys to have PSA fluctuations at that level.

Whilst you await results try not to read too much into PCa comments.

Ray

User
Posted 22 Jun 2015 at 22:01

Martin,

There was a question about minute fluctuations in PSA readings asked at the Mill on The Soar weekend function of the Specialist guest speaker. I can not remember exactly what was said, but I think it was along the lines of such small differences are so insignificant that they are not to be worried about. Hopefully someone with a better memory will be along to confirm this?

As an example I was told that my increase of 1 in less than a month at diagnosis was nothing I should be worried about, I had been told that this indicated an aggressive cancer.

Hope this helps put your mind at ease?

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 23 Jun 2015 at 08:55

Hi and thanks for your comments

Although we are talking about small numbers , I have read that if your PSA starts to rise they monitor you to see how fast it rises, and if it double in a period of 10 months then it should start the alarm bells ringing

My psa although low has risen from 0.03 to 0.052 which is almost doubled in 3 months !!!

I also know that it must rise to 0.2 before something is done ?

I AM WORRIED

M D

User
Posted 23 Jun 2015 at 09:44

My apologies if this posted twice as my post went to??

Of course you’re worried but until further test results come through it’s all an unknown. Yes it could be the first rise of more to come but then it could be just a one off. Even if further tests show recurrence you are still in the curative camp albeit via further treatment most likely RT (I’m taking it you haven’t had that as well as from what I can see from your profile it doesn’t give initial diagnosis staging: PSA- Gleason - T etc )

I can only advise you leave off internet research as it’s only going to increase your concerns.

Ray

User
Posted 23 Jun 2015 at 13:11

I'm one to talk but if you were on the standard PSA test you would not even be aware there were any fluctuations ie your PSA is below 0.1

Bri

User
Posted 23 Jun 2015 at 13:27

Absolutely Bri and other surgery guys. I couldn’t leave him with no reply - calm his nerves down

Ray

User
Posted 23 Jun 2015 at 14:01

Our uro says 0.02 - 0.05 are actually the same result when you take into account machine fluctuations, what you have done or had to eat that day, and data tolerance sets at such tiny amounts. I am not sure everyone here was convinced so I was very happy to hear J say the same thing at MOTS on Saturday.

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

User
Posted 24 Jun 2015 at 07:26

Hi all

I have had time to read all your comments and do some thinking,

1. my understanding of the acuracy of the test equipment was designed to read very low reading for post RP ?
2. They should be callibrated on a regular basis ie every month
3. If .02 and .05 are the same !! why do they use such senertive equipment?
4. If I had just been diagnosed with prostate cancer then I understand .1 is low but I have hade mine removed hence the more sensative tests !!
5. No one hase mentioned the rate at which your PSA doubles !!

I'm sorry to sound negative and that you are all trying to calm me down I do appreciate, it but. I don't need false hope

It's bad enough being told you have cancer , but playing the waiting game is even worse

Martin

User
Posted 24 Jun 2015 at 08:33

It's not false hope, I don't think any of us here can be bothered with lying to people to make them feel better. Nor do I think our urologist would lie to us or that the oncologist on Saturday would have made it up. Look at some of our profiles - do you think you are the only person to grapple with the anxiety that ultra-sensitive tests cause? The problems of ultra-sensitive testing are one reason that some hospitals don't use them, offering PSA results only to 1 decimal point. Of course the machines are calibrated regularly but it isn't only prostate cells that produce PSA, it also comes from the adrenal gland. Women have an average PSA of 0.05 which can rise as high as 0.2 after orgasm and higher in breast milk.

Our urologist told me that if you took one blood sample and tested it in the exact same machine a number of times, the result could be anything from 0.01 - 0.05. In reality, most labs have more than one testing equipment anyway so the test from 3 months ago isn't necessarily from exactly the same machine, or the machine could have been recalibrated in between times. Or you could have been cycling or masturbated just before the second test, or have done something that stimulated your adrenal gland (been late for the appointment/found it hard to park/had a row with the boss/had to get a big piece of work completed?)

Doubling time is relevant to men with advanced PCa or whose PSA has risen over 0.1. In your situation, the significant threshold is three successive rises and/or PSA over 0.2 NOT doubling time.

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

User
Posted 24 Jun 2015 at 09:13

Hi

I didn't say you were lieing !!

I am sorry if I have upset you ,,

Unles you have been diagnosed with cancer I don't think you can really uderstand what feeling you go through

Trying to comfort your familly ,

User
Posted 24 Jun 2015 at 09:42

M.D

I’ve been around 10 years and in that time could count on at most two hands those who gave false hope. One it would be wrong and we don’t give what we wouldn’t want to receive. The viewpoints have been given to show there is an alternative reason to why the increase. As my previous post said Yes it could be recurrence or a one of? Only future test results will show that.

The waiting game: can’t think anyone here who hasn’t been and still does go through that as their own PSA fluctuates/rises. My next PSA test is soon and after all these years I still get concerned

Other glands and doubling in time info has been given by Lyn.

Do the partners know what having cancer is like? Some of course have had and still have their own cancer issues. Do they know what’s it like to have prostate cancer? Most would be the first to admit not entirely but do they suffer alongside the loved ones – oh yes.

There is the theory stress raises PSA levels – so is getting too stressed out on something you can’t change helping.

Ray

Edited by member 24 Jun 2015 at 09:47  | Reason: Not specified

User
Posted 24 Jun 2015 at 10:10

Oh, you didn't upset me at all - I was just saying it how it is!

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

User
Posted 24 Jun 2015 at 10:17
Originally Posted by: Online Community Member

Hi

I didn't say you were lieing !!

I am sorry if I have upset you ,,

Unles you have been diagnosed with cancer I don't think you can really uderstand what feeling you go through

Trying to comfort your familly ,

Fair point but on the other hand, when you have cancer it isn't always easy to be rational. As it happens I was treated for two different cancers when I was younger, neither of which have any kind of routine blood test monitoring to reassure me that they don't come back. I trust my body and the science.

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

User
Posted 30 Jun 2015 at 12:28

Hi
Just got back form seeing my Uro , My psa has gone up again to 0.065 in 3 weeks , Has you all said nothing to worry about!
he said that I am rite to be concered but they won't do any thing uless it goes to 0.2

So thank you all for your kind words

just got to wait 3 months

MD

User
Posted 10 Sep 2018 at 09:42

Thank you Lyn

I found your posts, knowledge and information sharing very valuable and comforting for me.

User
Posted 12 Sep 2018 at 19:29

Originally Posted by: Online Community Member

PSA, it also comes from the adrenal gland. 

I’m in the same boat M.D. PSA rising although I‘m not as concerned as I should be. post op at 6w = 0.03 and post op at 12w = 0.04 doubling rate approx 4m. I also proved that my home made PSA half life calculator was more accurate than the guesses of an oncologist and prof.

I asked the following questions today and I will keep asking them to every Onco/Professional I see.

1) Can PSA be produced by the Adrenal Gland. Consultant said NO

2) What is the post op reason for a measurable PSA. Consultant said (a) Machiene error, (b) Microscopic material either cancerous or non cancerous left behind.

Follow ups;

1) PSA is expressed in the blood right. consultant said Yes.

2) How can microscopic PSA that is clinging to a preserved nerve bundle, deprived of blood supply express a measured PSA. Consultant doesn’t know.

3) How can Cancer cells that have been microscopically left behind establish themselves and secrete PSA so quickly. Consultant doesn’t know.

This is going to be a trippy ride for sure

Fresh

Edited by member 12 Sep 2018 at 19:29  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 12 Sep 2018 at 21:09

Gosh - perhaps s/he wasn't feeling in the mood to chat?

PSA present in other tissues / fluids (2015) - https://emedicine.medscape.com/article/457394-overview#a2

PSA in the ileum and other non-prostatic tissue (esp p295) https://onlinelibrary.wiley.com/doi/pdf/10.1002/ijc.20605

Research on PSA in female body fluids (2005) - eventually changed the way rape swabbing is collected and assessed - https://web.archive.org/web/20050827025155/http://mafs.net/pdf/forensicdetectionsemen3.pdf

 

 

Edited by member 12 Sep 2018 at 21:11  | Reason: to activate the hyperlinks

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

User
Posted 12 Sep 2018 at 21:52

Thanks Lyn. You are a star. The second paper seems to be the most comprehensive/and qualified. The key paragraph.

”Initially, PSA expression was reported to be exclusive to the epithelial cells of the prostate gland, but later it was found that low levels of PSA are also present in other tissues and biologic fluids. PSA immunoreactivity has been detected in the mammary glands, salivary glands, pancreas, breast milk, thyroid gland, placenta, amniotic fluid and semen, as well as in various malignant tis- sues. By RT-PCR, PSA encoding transcripts have been de tected in the endometrium, trachea, thyroid gland, salivary gland, pancreas, placenta and uterus, and low levels have also been detected in the pituitary gland, testis and peripheral leuko- cytes. Some of the cited findings are contradictory and were in most cases obtained by the use of a single method. Extrapros- tatic expression of hK2 has not been studied extensively; never- theless low levels of immunoreactivity have been found in saliva, amniotic fluid, mammary gland and breast milk, and transcripts encoding hK2 have been observed in the prostate, thyroid gland, endometrium and pituitary gland.”

Cant see the Adrenal gland mentioned anywhere and the paper looks like it is discussing where PSA is secreted (e.g. Fluids) and where it comes from. But I will be asking more questions and refer to this at my next meeting.

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 12 Sep 2018 at 22:56

Good evening, everyone.  My hospital uses the super sensitive machine and I will outline my experience.

January 2017 - first post prostatectomy PSA test result - 0.014

March 2017 - 0.015

May 2017 - 0.019

June 2017 - 0.014

September 2017 - 0.02

January 2018 - 0.023

Oncologist recommended radiotherapy.  She said rising PSA indicated that cancer cells were present but she couldn’t say exactly where.  So I paid for a PSMA scan and it found remaining cancer cells.

If I had been in a hospital which didn’t use the super sensitive machine, my PSA might still be less than 0.2 and my cancer would have possibly continued to grow.

I know the debate about super sensitive testing evokes strong views, but based on my personal circumstances and experience, I’m glad of it.

Ulsterman

User
Posted 12 Sep 2018 at 23:09
The references to adrenal gland are on p295 - 2 different studies observed the same pattern, although both were small scale projects (in one case, there were only 2 patients I think?)

Certainly, PSA is recorded in other cancers but it does also seem to be widely accepted that very low levels of PSA can be measured in healthy people. It was our urologist who mentioned the adrenal gland, when we were agonising about the rise from <0.1 to 0.1 Now, with a range of tests at 0.09 - 0.11 we are comfortable to believe that J just produces a high level of healthy PSA until it is proven otherwise.

I am sure your specialists will be thrilled the next time they see you. It is a shame isn't it that not all specialists have the same approach - John's uro and onco both seem happy to engage in discussions with me about research, emerging trends, perceptions ... I have asked him about people's situations on here sometimes (Trevor Booth and Si_ness) which he finds quite bemusing, I think.

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

User
Posted 12 Sep 2018 at 23:17

Originally Posted by: Online Community Member

Good evening, everyone.  My hospital uses the super sensitive machine and I will outline my experience.

January 2017 - first post prostatectomy PSA test result - 0.014

March 2017 - 0.015

May 2017 - 0.019

June 2017 - 0.014

September 2017 - 0.02

January 2018 - 0.023

Oncologist recommended radiotherapy.  She said rising PSA indicated that cancer cells were present but she couldn’t say exactly where.  So I paid for a PSMA scan and it found remaining cancer cells.

If I had been in a hospital which didn’t use the super sensitive machine, my PSA might still be less than 0.2 and my cancer would have possibly continued to grow.

I know the debate about super sensitive testing evokes strong views, but based on my personal circumstances and experience, I’m glad of it.

Ulsterman

 

Yes but you were in a slightly different situation and I suspect the onco took other factors into account like your upgrade to T3b, positive margins, PNI, extracapsular invasion and your young age ... the odds were that you were always going to end up with salvage treatment and some oncos would have gone for adjuvant treatment as soon as they saw the pathology report. In that context, your usPSA results were perhaps only part of the bigger picture? 

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

User
Posted 13 Sep 2018 at 07:48

Lyn

I totally agree that other individual circumstances will have been taken into account by my oncologist.  The point is, though, that had I been in a hospital which didn’t use the super sensitive test, I might still be classed as undetectable when cancer was very much there And could have been treated.  For what it’s worth, I did ask my oncologist for adjuvant radiotherapy but she isn’t a fan of ‘unnecessary’ treatments and wanted evidence that I needed further treatment.  She got that evidence earlier because of the sensitive test.

Ulsterman

User
Posted 13 Sep 2018 at 08:22

Originally Posted by: Online Community Member

Lyn

I totally agree that other individual circumstances will have been taken into account by my oncologist.  The point is, though, that had I been in a hospital which didn’t use the super sensitive test, I might still be classed as undetectable when cancer was very much there And could have been treated.  For what it’s worth, I did ask my oncologist for adjuvant radiotherapy but she isn’t a fan of ‘unnecessary’ treatments and wanted evidence that I needed further treatment.  She got that evidence earlier because of the sensitive test.

Ulsterman

Ulsterman you are a classic example of why supersensitive is a good idea.  Some oncos believe anyone with a T3 should have ajuvant therapy even though they know this will overtreat 50% of patients.  Use of supersensitive allows you take some time and still catch and treat any recurrence early as research seems to indicate you can safely wait until 0.1 before starting RT.  The impressive thing about your case is that they were able to find and target the recurrence too.  

 

PS I know what Lynne is going to say now!

Edited by member 13 Sep 2018 at 08:23  | Reason: Not specified

User
Posted 13 Sep 2018 at 10:42

Francij1

Please remember, the cancer cells were found by a self-funded PSMA scan.  With such low PSA, it was a gamble, but it did get results.

And we all love Lyn whose knowledge, research and experience has helped countless people, but I’m still glad I’m in a super sensitive testing hospital😊

Ulsterman

 
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