PSA rapid rise to 20, no explanation.

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

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

Louise

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

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

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

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

Edited by member 10 Dec 2015 at 14:19  | Reason: Not specified

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

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

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

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

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.

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

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.

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.

I'm still being monitored, but nothing has been found so far.

My urologists tell me I'm quite an unusual case.

My history over the last four years has been steadily increasing PSA. peaking at about 24. I've had 3 biopsies, and 3 MRIs now, and nothing has come up. Numerous DRE exams as well of course.. I'm relatively young (mid-50's). My prostate is below average in size (which according to the urologist makes them think there must be something going on if my PSA keeps increasing). . I have no symptoms, but I was fully prepared for them to find something due to the steady increase in PSA and just be glad that it was discovered very early. But they've found nothing. Biopsys negative, MRI fine, other than one area of potential interest that was looked at with a targeted biopsy.

Latest news is PSA has dropped from the peak of 24 to the 20-21 range. So at least it's no steadily increasing anymore.

They will continue to see me quarterly for PSA update. We will re-evaluate in three months. If PSA trends up again, another biopsy will be done for sure. The younger urologist says he will be discussing my case with other urologists.

PS: I'm in Canada, but found this forum

So after peaking at PSA of 24, an then going back to 20-21 for next two PSA tests, it was back up to 24 earlier this year. I've had three biopsys and three MRI already. So Urologist suggested another biopsy as it has been a few years since the last biopsy, and MRI are not as good at picking up Gleason 6 cancer.

Just got the biopsy results today, and 5/7 samples showed cancer, Gleason 6. Only 7 samples, because a few of the samples didn't hit. My prostate is small, and I've had three biopsys already.

While Gleason 6 rarely has metastasized, I asked for bone scan and CT scan as follow-up, and the urologist agreed since my PSA has steadily increased for over 5 years, and is relatively high. Getting those results will inform next steps.

In this thread, a few of us (including OP BillyBones and myself) did eventually find cancer at an early stage because our doctors kept locking when our PSAs kept increasing.

I'm just glad that it was found very early.

You can now add to that...
40% of 40 year old men in the US have prostate cancer. This is a recent discovery from analysis of bodies of 40 year old males during post-mortem (deaths nothing to do with prostate cancer).

I wouldn't say it's the "advice I wanted".    But I have been told by several different urologists that my case is very unique.  I well aware that many say Gleason 6 is not cancer, and best advice is AS.    But every case is different, and the advice of the top cancer center in Canada is based on all factors in my unique situation,   treatment is recommended.

I chose to have the OP because I was young (54) the lesion was close to the capsule edge and my Dad died of it.

I have no regrets.

I have just realised these updates are on someone else's thread. It would be better to start your own thread, Janus - copy the recent posts into it and then we can copy our replies over as well. 

Edited by member 01 Sep 2019 at 15:53  | Reason: Not specified

I started a new thread to summarize my story,  but quick update here as well.

Had robotic surgery on Dec 11th with one of the top surgeons in Canada.

Surgery results and Post-op pathology.

Nerve sparing 100% on left, and 70% on right.

Pathology:  cancer upgrade from Gleason 6 to 7 (3 +4) with 30% of prostate showing 4.  Tumor extends just outside prostate, so cancer grade is upgrade from T1c to T3a.    Lymph nodes and seminal vessels are clean. But  limited positive margin near apex.  So no doubt treatment was the right choice before it spread further. 

First PSA (six weeks after) shows PSA down to .092.

Will monitor PSA regularly and if PSA goes up, consider low does radiation due to positive margin.

incontinence already not a problem at six weeks.   I was quite active before, including lots of yoga.   I also went to see a Physiotherapist who specializes in pelvic floor issues pre-surgery to get a head start and to be sure I was doing kegels properly.     ED - it's early, and area was tender after catheter removal,  but going on daily Ciallis now to give things a jump start.

Edited by member 31 Jan 2020 at 16:13  | Reason: Not specified