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PSA rapid rise to 20, no explanation.

User
Posted 01 December 2015 22:22:51(UTC)
Over 4 years, PSA steadily rising...3, 7, 9, 14, now 20. Had two biopsies, both clean. DREs reported to be normal. One MRI, no indications. No infections, occasional night peeing, but usually only one mid-night pee each night. Urologist can't explain PSA rises. Recommending another biopsy. He's alarmed, but has no answers.
What might be other explanations?...or do we just keep looking until we find the inevitable cancer? Could the elevated PSA be originating somewhere other than Prostate...i.e. Already spread?
Appreciate hearing from others who share similar experience.
Cheers!
User
Posted 12 January 2016 21:56:06(UTC)
Alan

The NHS is a fabulous institution, but like all institutions, it has its bad pennies.

The squeakiest wheel gets the oil.

Start squeaking.

Loudly and every day.

Louise
Thanked 2 times
User
Posted 12 January 2016 22:31:38(UTC)

It's a stupid situation.

Telephone PALS at the hospital and make an appointment. This is your life we are talking about here.
Ask for a second opinion, either through the GP or perhaps through PALS.

If you were a pain in the backside and being a nuisance because you weren't happy with what you were told is one thing but you can't even be that without the information to go on.

Consultants are very busy people, especially these days but how long would it take for him to either tell his secretary to ring you with the info or to dictate a short note to you. Bad manners but I doubt he cares very much.

Take it into your own hands.

We can't control the winds - but we can adjust our sails
Thanked 1 time
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User
Posted 02 December 2015 06:47:33(UTC)

Hello Billybones and welcome

It all sounds very odd. I would have thought that with a PSA rise to 20 that something would have shown up to be causing it.

Why did you have the first PSA test. Was it the result of pain or something or just a general test?

What kind of biopsy did you have as there is more than one I think.

I do hope that somebody else comes along shortly to ask more relevant questions but to be honest, I'm stumped.

On the plus side, at least you have a Urologist that isn't dismissive

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 December 2015 07:25:58(UTC)

Hi Billy
Click on my picture and read my profile. I'd had a PSA of 4 then 6 then 4 , and then it went ballistic at 15 , 18 , 23 , eventually 43 at time of surgery. All this time I had biopsies , scans etc and they couldn't find it. They did in the end far too late. Even straight after my surgery he said the removed prostate looked and felt fine , but on Histology was G9 and cancer already in my lymph nodes.
Just let them do their thing and I wish you all the very best
Chris




If life gives you lemons , then make lemonade
User
Posted 06 December 2015 16:10:52(UTC)
I may be imagining this, but I think I once read that a psa count can arise from adrenal gland issues. I think the adrenal glands make hormones than can affect the psa level.

As I say, I might be imagining this. Maybe Lyn will know, but it may be worth a question.

Louise
User
Posted 06 December 2015 17:23:23(UTC)

As I said on another thread, the quality of the MRI scan can make a difference in interpretation and TRUS biopsies are more likely than transperineal template biopsies to miss cancer.

Adrenal gland only contributes a very small amount to PSA and would not account for sizable figure here. I would insist further investigations are made in need going to another hospital with more advanced scanners and ability to do an ultra scan guided transperineal biopsy.

An infection is a frequent cause of increased PSA but in this case the rises have taken place over 4 years and I would have thought that if a cause this would have been investigated and dealt with long ago.  Also, an enlarged Prostate can produce higher PSA as can being older but unlikely to explain such a high figure.

Barry
User
Posted 06 December 2015 17:32:51(UTC)

Hi Billy,

I guess the problem is that most of us guys on this site have confirmed diagnosis of prostate cancer and so our knowledge of how high PSA can go because of other reasons is rather poor?

When I was first diagnosed with a PSA of 30, my GP said she knew men with higher PSA counts who did not have cancer, so your reading is far from unique, but appart from telling you that I have no idea of the cause.

Best to ask the doctors?

:)

Dave

User
Posted 06 December 2015 17:33:39(UTC)

Please ignore this, I managed to post the previous message twice!

:)

Dave

User
Posted 06 December 2015 19:40:59(UTC)
Hi Sandra,
Thanks for your reply. My first PSA was just on a recommendation from a good friend who had PC and then had his prostate surgically removed successfully, currently he shows no signs of remaining PC. Very glad for him.
My 2 biopsies were of the TRUS variety, if I understand correctly. The 1st took 12 samples and the 2nd took 24 samples. Both were "clean". I'm scheduled for a 3rd mid-December...again a TRUS type, but the urologist indicates it will be even more comprehensive.
Wondering if there are men out there that have undergone several biopsies with increasing PSA, but never develop PC??? Or is it just a matter of time to find the PC?
Anyway, thanks for your thoughts.
Cheers, Billy
User
Posted 06 December 2015 19:52:32(UTC)
Hi Chris J.
Appreciate your reply and very sorry to hear of your continuing troubles. Quite frankly, your path is precisely what I fear. Can you think of anything you or your Drs. Might have done differently to obtain a quicker/better result?
Best of luck to you, Chris.
Cheers, BillyB
User
Posted 06 December 2015 20:20:05(UTC)

Hi Billy
I'm not sure anything could have been done much better really. The hospital has been world-class in my opinion with very rapid appointments and forward movement. If I'm brutally honest the failure was at GP level with a PSA of 4 then 6 then 4 over two years. I was aged 42. They were also allowing me to have testosterone replacement therapy which is controversial. Then there was me at the end !! Defying the verdict and avoiding the operation. I was PSA 15 sept,14 and only operated on June,15. Way too slow.
I just wish you luck
Chris




If life gives you lemons , then make lemonade
User
Posted 06 December 2015 20:30:32(UTC)
B

I worked with a guy who had a PSA that at times went up to one hundred he had at least three biopsies including an MRI guided template biopsy.They never found any cancer and he now just has regular PSA tests. He did have some other medical issues such as colitus.

As a note of caution his PSA did fluctuate up and down so is quite different to your steady rise.

All the best for the future.

Thanks Chris
User
Posted 09 December 2015 21:05:00(UTC)

Hi Billy, 

 

I am in a very similar position to you.  I have been having urination problems for 9 years with many visits to the GP, I had one DRE several years ago, but not once did any of the GP's I saw suggest a PSA test until March of this year when my PSA level was 8.9, so I have no idea how steady the rise has been.  I was referred for a biopsy which I had in June (TRUS guided 12 core), which came back clear except for a high grade PIN in one core, so the urologist said he wanted to keep an eye on me and arranged a follow up telephone consultation for October.  

I had a PSA test in September for the consult in October at which time I was told it had gone up to 14.7 but that there was nothing to worry about as my biopsy was clear, he did however, arrange for an MRI scan which I had in November.  I persuaded my GP to do a repeat PSA test a couple of weeks later as I was having blood drawn for a kidney function test and this time it came back as 15.0 so a further rise.  I eventually got my MRI results at the end of November which just said that "essentially it didn't show anything worrying" and that he would do a follow up in 6 months.  So unlike your urologist who is concerned, mine doesn't think there is anything to worry about and I am having great difficulty actually getting him to take it seriously.  I have asked for a free/bound PSA test which can provide an indication of malignancy iF free PSA is below 15%.  I don't know if he will agree to this yet, as I can't get to speak to him, I asked for a call back, but instead he just wrote another letter again saying there was nothing to worry about but offering no explanation for the rising PSA, so I had no option to put my questions in a letter and I am awaiting a reply.

Alan

User
Posted 09 December 2015 23:40:20(UTC)

Different consultants/hospitals can have different ideas on when to offer treatment for high grade PIN but this can also take account of a patient's histology. Therefore not a guide for all but a friend of mine who has PIN has recorded PSA tests fluctuating between eights and nines for several years and has been told that if it tops ten he will be offered treatment.

Barry
User
Posted 07 January 2016 19:52:37(UTC)

Hi Billy,

Seems we are in the same boat.  I had a low PSA for years, but it went from under 2 to over 8 in a year.  Since then, it has steadily increased to just under 19 at the last test.  I have had three biopsies, each taking more core samples than the previous one and my doctor is now suggesting a saturation biopsy.  More recently, the core samples taken from the last biopsy were submitted to a lab for a more sophisticated DNA test. That came back "negative" as well.  I then submitted a blood sample for the new 4k test.  It reportedly takes into account your total PSA score, free PSA level intact PSA,, age and biopsy results (but this entered as a history of biopsy, not the number performed).  My 4K score put me  at a 35% risk of high grade cancer.

The rise in PSA all began after I had a serious urinary track infection.  Six months latter my PSA soared to over 8 and it has gone up steadily since, generally increasing 1-3 points a year.  I am not a strong believer in coincidence and think there could be a connection between that infection and the rapid rise in my PSA.  However, my doctor did put me on Cipro and that did not reduce my PSA. Still, an antibiotic may have no impact on a viral infection.

I am just wondering if anyone else has had a similar experience.  It is difficult to know how seriously to take a rising PSA.  Best wishes Billy

 

Christopher

User
Posted 07 January 2016 20:09:19(UTC)

I have still had no luck getting any information from my urologist.  He will not return my calls and has ignored my letters so I have no idea how to take this forward.  I am sure if I went private and paid to see him, he would be falling over backwards to speak to me.  It is now 3 months since my last PSA test which had risen to 15.0, so I think I have no alternative but to pay fro a private PSA test as I am unwilling to wait another 3 months as was suggested by the urologist to see what it is doing.  I have been taking a turmeric supplement since before Christmas and I am interested to see what effect if any that has had.  At least in your cases (Billy and Christopher), your urologists and trying to get to the bottom of it, mine can't even be bothered to give me a call.  

User
Posted 07 January 2016 20:40:44(UTC)

alan several things spring to mind contact the PALS at your hospitsl and lodge a complaint, see your GP re a 2nd opinion and/or move to another hospital, no one will fight our battles for us
regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 08 January 2016 04:20:40(UTC)
Hi Christopher,
Very frustrating, isn't it. We know there's something going on, but can't get an answer..
Sounds like your urologist has access to more sophisticated tools than at my military hospital. So far all I've seen are PSA blood tests and TRUS biopsies. My third biopsy was 24-core samples. Not sure how many samples there are in a saturation biopsy, but I'd definitely opt for that...

My "update" is that my urologist called yesterday with the results of my 3rd biopsy. He said he found the cancer. The only specific info so far is that I have a Gleason score of 6. I have an appt to see him in the morning, so I hope we'll have a clear path by tomorrow afternoon.
From a close friend who has been through the whole process, including radical prostectemy, they apparently can not determine if the cancer has spread until they remove the prostate and surrounding lymph nodes, so I expect it will be a while until I am fully confident in the results, whatever they are.
Good luck with your search...there's something going on, you have to find out what.
Cheers, Billy
User
Posted 08 January 2016 04:26:30(UTC)
Hi Alan,
I'm not really sure how the NHS works, as I'm in the states. Seems you should be able to get a second opinion from a responsive urologist. This is after all, a life and death matter. If you have to pay for more tests, so be it.....it's really important.
Good luck.
Cheers, BillyB
User
Posted 12 January 2016 21:18:29(UTC)
Alan,
Have you thought of a PCA3 test - used to determine scale and aggressiveness of PCa and also for guys like you, rising psa a negative biopsies or positive biopsies to help you decide which treatment etc etc. See website PCA.org. You could demand on NHS but most likely you will have to pay for it £350 the website will explain it, who can do it etc. Basically any urologist can do it but sample has to be sent to one of a limited number of labs that can do the test/results .
OH goes in on Monday for trains per. Fusion biopsies privately, results 2 weeks ish so I'm off line until he's had them, hope he recovers well as we have a long journey home
User
Posted 12 January 2016 21:28:48(UTC)

I am still trying to get a response from my urologist.  Although his secretary confirmed they had received my letter before Christmas, somehow they no longer have it, so I have now emailed them a copy.  If I do not get a satisfactory response within another week then I will think about raising a complaint and maybe asking for another urologist.  I have been taking the turmeric supplement twice a day for a month now, so I will either get a PSA test through the urologist this month or pay for one privately as I am not prepared to wait any longer.  Depending on the results I will then decide whether I push for further investigation (if it has gone up) or accept what the urologist is saying if it has come down.

 

Good luck with the biopsy and let us know how you get on

User
Posted 12 January 2016 21:56:06(UTC)
Alan

The NHS is a fabulous institution, but like all institutions, it has its bad pennies.

The squeakiest wheel gets the oil.

Start squeaking.

Loudly and every day.

Louise
Thanked 2 times
User
Posted 12 January 2016 22:31:38(UTC)

It's a stupid situation.

Telephone PALS at the hospital and make an appointment. This is your life we are talking about here.
Ask for a second opinion, either through the GP or perhaps through PALS.

If you were a pain in the backside and being a nuisance because you weren't happy with what you were told is one thing but you can't even be that without the information to go on.

Consultants are very busy people, especially these days but how long would it take for him to either tell his secretary to ring you with the info or to dictate a short note to you. Bad manners but I doubt he cares very much.

Take it into your own hands.

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 15 January 2016 14:48:55(UTC)

I am still awaiting a response from the urologist regarding my questions re diagnosis. I was having a blood test on Monday for something else and asked my GP to include a PSA test which they kindly did. It has stayed the same, so still at 15, but at least it hasn't gone up in the last 3 months, but still no explanation as to why it is so high. It is now 7 months since my biopsy, so if the elevation was as a result of the biopsy, then I would have expected it to have settled down some by now. I spoke to the urologists secretary today and advised that if I didn't have a response by Monday that I would be raising a complaint, lets see if that stirs any action. I expect not.

User
Posted 31 August 2017 07:57:34(UTC)

Hi Billy. I am in the same boat as you. I hope you can share your experiences between when you wrote the post and now. My PSA just went from 8 last year to 12 this year. Thank You.

User
Posted 08 November 2017 21:16:55(UTC)

Hi everyone, I seem to have found this discussion just like Mint.

I have very similar PSA trend and levels as OP - Billy. Latest reading from this week is PSA of 20.

I've already had three biopsies, and two MRIs. The history was Biopsy (#1), repeat Biopsy (#2) - found pins, MRI, Biopsy (3), MRI (#2).
I asked my urologist if realistically, the PSA results mean that I likely have something, but it's hasn't been found yet. And he said not necessarily; no doubt trend is a concern. 

Next step is MRI #3, and based on what the MRI sees, probably Biopsy (#4).

User
Posted 09 November 2017 01:05:21(UTC)
Hi Mint and Janus,
I feel for you both...keep searching, there’s something going on and you must find out what.
In my case, I kept doing biopsies until the cancer was found. In March ‘16 I had my prostate and some lymph nodes removed by Da Vinci robotic surgery. Results indicated the cancer was contained within the prostate. After a year of quarterly Tests, my PSA has dropped into “undetectable” range. Doc says if it stays undetectable for 5 years, I’ll be good.
A few side effects, but happy with the big picture. Due to an unrelated diet change, have lost 45 pounds and have never felt better.

Keep pushing for answers...it is important. Best of luck to you!
Cheers, BillyB
User
Posted 11 January 2018 20:40:03(UTC)

BillyB: good to hear that you're doing well. Thanks for your update.

Quick update from me. my PSA has gone up steadily over the last five years or so. It did level off at about 11-12 for about one year, and then started going up again to 14,16, and 20. I had three biopsies already (two biopsies to start, and then a targeted biopsy in June 2016 based on MRI results), and I had already had two MRIs (one in early 2016, and another one after the targeted biopsy). And just had my third MRI early this month..

Just discussed results of my third MRI with the doctor, and it's still negative. There is no change in the area of interest over the course of three MRIs. So rating is unlikely to have cancer.
Also, I'm pretty much symptom free. Around the time the PSA scores were increasing to 20, I did notice more symptoms such as needing to urinate more frequently. But now it seems back to normal.

So while I was fully prepared to hear that they found signs of PC (and I would consider it as good news that it was caught very early when it is most treatable), I'm still negative after three biopsies and three MRIs.
I will continue to see the urologist regularly, with updated PSA tests. And depending on PSA results, more MRIs may be in order. Of course, they all say that PSA is not a test for PC and high PSA doesn't mean you have PC. But if my PSA continues to go up, they continue testing until they find something or until I'm too old to worry about it. But hopefully, PSA stops going up.


User
Posted 12 January 2018 00:28:26(UTC)

Alan,

It has already been suggested that you raise the matter with PALS and this can be effective. I did not receive an answer to my written letter to a registrar at UCLH and even my GP (who I copied my letter to), asked whether I had had a reply as he had not seen one. I was therefore prompted to send a chaser with a another copy of my original letter but more weeks passed without reply. I then contacted PALS giving details who said they would investigate on my behalf. I asked them what was a reasonable time to get a reply and was told about two weeks. They ascertained that my letters had been received and must have pulled the right string because shortly thereafter I did receive a reply. So it can be worth a phone call which is all it took from me.

Barry
User
Posted 12 January 2018 01:03:54(UTC)

That post is two years old Barry :-/

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


User
Posted 12 January 2018 23:01:32(UTC)

Thanks Lyn - misread date - too many late nights! Apologies to Alan but perhaps it may encourage another member to coax a more expeditious reply where response is tardy.

Barry
 
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