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PSA rapid rise to 20, no explanation.

User
Posted 01 Dec 2015 at 22:22
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 Jan 2016 at 21:56
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

Edited by member 12 Jan 2016 at 21:57  | Reason: Not specified

User
Posted 06 Dec 2015 at 20:30
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 12 Jan 2016 at 22:31

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
User
Posted 22 Sep 2018 at 20:03

Hi All

Igot another test done and that figure was  14.9 but it was only a few days later so what goes???

I have been fast tracked and see a urologist on Monday a week after the last test date.

I rather fancy it may be prosatitis as I gat burning pain for a short time and also go constipated  for a time feeling like it was blocked further up the the anus itself.  Cleared very fast after the episode stopped leaving me much more comfortable. 

I desperately need something done about the urination as I need 4 or 5 times a night and stand or sit for along time trying to get going. It is bad for sleep but the daytime is SUDDEN need to go and it stops me travelling far from a loo, which do not exist in town anymore.

I am worried that they will not do anything, and Iwas going to ask about ReSume technique as it is quickly done   20 minute but the private cost was 

£5000 and for the job seemed very high for such a quick procedure  as it is only done at two centres in UK at the moment.

Will they not do a TURP if they are suspicious of high PSA numbers?  

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User
Posted 02 Dec 2015 at 06:47

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 Dec 2015 at 07:25

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

User
Posted 06 Dec 2015 at 16:10
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 Dec 2015 at 17:23

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.

Edited by member 06 Dec 2015 at 17:55  | Reason: Not specified

Barry
User
Posted 06 Dec 2015 at 17:32

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 Dec 2015 at 17:33

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

:)

Dave

Edited by member 06 Dec 2015 at 17:36  | Reason: Not specified

User
Posted 06 Dec 2015 at 19:40
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 Dec 2015 at 19:52
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 Dec 2015 at 20:20

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

User
Posted 06 Dec 2015 at 20:30
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 Dec 2015 at 21:05

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

User
Posted 09 Dec 2015 at 23:40

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 Jan 2016 at 19:52

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 Jan 2016 at 20:09

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 Jan 2016 at 20:40

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 Jan 2016 at 04:20
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 Jan 2016 at 04:26
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 Jan 2016 at 21:18
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 Jan 2016 at 21:28

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 Jan 2016 at 21:56
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

Edited by member 12 Jan 2016 at 21:57  | Reason: Not specified

User
Posted 12 Jan 2016 at 22:31

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
User
Posted 15 Jan 2016 at 14:48

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 Aug 2017 at 08:57

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 Nov 2017 at 21:16

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).

Edited by member 08 Nov 2017 at 21:19  | Reason: Not specified

User
Posted 09 Nov 2017 at 01:05
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 Jan 2018 at 20:40

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 Jan 2018 at 00:28

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 Jan 2018 at 01:03

That post is two years old Barry :-/

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

User
Posted 12 Jan 2018 at 23:01

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
User
Posted 16 Sep 2018 at 00:14

Hi

I have got BPH and it has never been diagnosed  properly just the symptoms. My PSA was 0.4  for years and rose to 0.9  four months ago. Now after seeing my GP  for a referral he had another PSA  and it came back at 21.9  in four months. Is this a fluke or can it go that quickly.  I asked for another test the next day in case of a faulty result. Am awaiting the result 

User
Posted 16 Sep 2018 at 00:33
It can happen that quickly - infection could cause a rapid rise which would then fall again with the right treatment and there was a well known urologist who went from a perfectly healthy PSA to much higher than yours in a very short time and was subsequently diagnosed with prostate cancer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2018 at 20:03

Hi All

Igot another test done and that figure was  14.9 but it was only a few days later so what goes???

I have been fast tracked and see a urologist on Monday a week after the last test date.

I rather fancy it may be prosatitis as I gat burning pain for a short time and also go constipated  for a time feeling like it was blocked further up the the anus itself.  Cleared very fast after the episode stopped leaving me much more comfortable. 

I desperately need something done about the urination as I need 4 or 5 times a night and stand or sit for along time trying to get going. It is bad for sleep but the daytime is SUDDEN need to go and it stops me travelling far from a loo, which do not exist in town anymore.

I am worried that they will not do anything, and Iwas going to ask about ReSume technique as it is quickly done   20 minute but the private cost was 

£5000 and for the job seemed very high for such a quick procedure  as it is only done at two centres in UK at the moment.

Will they not do a TURP if they are suspicious of high PSA numbers?  

User
Posted 16 Jan 2019 at 15:00
Hi everyone. Further update from me.

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

User
Posted 16 Jan 2019 at 15:47

Assuming that infection has been ruled out and they found no evidence of PIN (a sort of pre-cancerous state)?

I think if this carries on, you might consider pushing for a bone scan as well. There are a tiny number of cases worldwide where secondary prostate cancer has been diagnosed even though there was no primary cancer in the prostate. If you were my dad or brother, I would also be asking them to check for other conditions that can raise the PSA such as breast cancer and thyroid problems.

Edited by member 16 Jan 2019 at 15:48  | Reason: Not specified

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

User
Posted 24 May 2019 at 16:20
Another update to my story (last post two posts above) (steadily increasing PSA for over 5 years, with brief periods of slight decline in PSA, but upward trends resumes).

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.

User
Posted 31 Aug 2019 at 19:46
I started a new topic, but thought I'd post here so anyone reading this topic can see the result.

I had 4 MRI and 3 biopsies. MRI only shows PIRAD 2 and some PINS. But since PSA pretty much had a steady increase over the last 5 years (from 8 to 24.2), a fourth biopsy was done and Gleason 6 found.

The next decision then is what to? active surveillance or treatment? My regular urologist was on medical leave, and the younger urologist who was covering said two somewhat opposing things. At the 2nd last appointment, he said active survelliance might be difficult due to my small prostate (last biopsy only managed to hit 7 cores due to small prostate). Then at my last appointment (after bone scan and CT scan come back clear) he said their protocol is not to treat Gleason 6 (i.e. wait to see if it gets worse).

I was not entirely comfortable with the somewhat contridictory statement (AS would be difficult, but don't treat gleason 6), and got a 2nd opinion at the top cancer center in my country (Princess Margaret hospital in Canada). The head of the department saw me, and said that while the "normal protocol" is AS for Gleason 6 (and Princess Margaret is one of the centers that was involved in coming up with the protocol), there are just too many unexplained things in my case. And since I'm only age 57, he recommends treatment.

I agreed. Non-stop increase in PSA, with a small prostate. 5 of 7 cores finding Gleason 6. Very possible there is higher grade elsewhere. I expect to have another 30+ years, so 10 year survival rates aren't good enough. I'm healthy now. Will get it treated. Have decided on Robotic Surgery. Waiting for surgery date. Likely to be in December.

User
Posted 31 Aug 2019 at 19:48
So I guess to conclude, PSA is not a cancer test. But if your PSA keeps increasing, and there is no other explanation, keep checking.

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.

User
Posted 31 Aug 2019 at 20:00
On the basis that 50% of men in their 50s, 60% of men in their 60s and 70% of men in their 70s have some cancer in their prostate but most will never know or need treatment, the other way to see it is that if you keep looking, you are likely to find some eventually. The small amount of G6 that they have now found may or may not have been there before. Either way, I think you have got the result you wanted so best advice is to go and have a holiday, do normal things, get fitter, work on the kegels and have loads of sex ... December will be upon you in a flash.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 20:20

Originally Posted by: Online Community Member
On the basis that 50% of men in their 50s, 60% of men in their 60s and 70% of men in their 70s have some cancer in their prostate but most will never know or need treatment, the other way to see it is that if you keep looking, you are likely to find some eventually.

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).

User
Posted 31 Aug 2019 at 20:36
Indeed. The other stats came from a large scale European project looking at the post mortems of men who died of all causes, including accidental deaths but excluding prostate cancer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Sep 2019 at 04:12

Originally Posted by: Online Community Member
On the basis that 50% of men in their 50s, 60% of men in their 60s and 70% of men in their 70s have some cancer in their prostate but most will never know or need treatment, the other way to see it is that if you keep looking, you are likely to find some eventually. The small amount of G6 that they have now found may or may not have been there before. Either way, I think you have got the result you wanted so best advice is to go and have a holiday, do normal things, get fitter, work on the kegels and have loads of sex ... December will be upon you in a flash.

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.

 

User
Posted 01 Sep 2019 at 12:53
As has been said ,there is a body of opinion now that Gleason 6 (3+3) should not be considered as cancer but there have been cases where following biopsy men were found to have some 4 even though only 3 had been found through biopsy, so agree each case should be carefully considered before treatment decision made.
Barry
User
Posted 01 Sep 2019 at 15:08
Like most things PC related there is always "an exception". I was G6 at diagnosis and remained G6 after RRP BUT I was upstaged to T3A (Allegedly G6 can't live outside the capsule!) .

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.

User
Posted 01 Sep 2019 at 15:42

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
On the basis that 50% of men in their 50s, 60% of men in their 60s and 70% of men in their 70s have some cancer in their prostate but most will never know or need treatment, the other way to see it is that if you keep looking, you are likely to find some eventually. The small amount of G6 that they have now found may or may not have been there before. Either way, I think you have got the result you wanted so best advice is to go and have a holiday, do normal things, get fitter, work on the kegels and have loads of sex ... December will be upon you in a flash.

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 said 'the result you wanted'. What I meant was that they have agreed to offer you radical treatment, which it seems is what you feel is the best option for you. The point of my comment was to use the time between now and December well, not to question whether it is the right thing. My husband was diagnosed with a G7 (3+4) which was allegedly so tiny that it couldn't be seen on scans and had been 'caught early'. He had the op and nothing could have been further from the truth ... it was in every section of his prostate and had invaded the bottom of his bladder. I wouldn't criticise anyone for opting for radical treatment but it is important to do lots of normal things first if you can as life will never be quite the same again afterwards.  

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

User
Posted 01 Sep 2019 at 15:46

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

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

User
Posted 11 Sep 2019 at 20:38

If I will start a new thread if I have a lot more to say.

It is helpful to read about others experiences.  I found this site through a google for increasing PSA (above 20) before they found Gleason 6.

There are so many decisions to make and each case is different.  Active Surveillance is the best answer for many with low-risk early stage detection.   But also important to keep in mind that Gleason score is not the only consideration (as you never know if the biopsy caught the main tumor).   In my case,  while PSA is a cancer test,  a high PSA> 10 (mine is now above 24) that has steadily increased is worrisome.  Together with a small prostate,  5 or 7 cores positive.     Doctor recommends treatment.

I'm reassured that my doctor is one of the strongest advocates for Active Surveillance and is considered by many to be the top urologic oncologist and surgeon in my country.  So I guess if he is recommending treatment,  I can stop second guessing whether I'm over-treating.

Don't have surgery date yet.  Likely December.   Will start new thread if I have a lot more to share!

 

 

 

User
Posted 11 Sep 2019 at 20:39
several typos in my post above. No edit function. Hopefully is makes sense. (e.g. PSA is NOT a cancer test... missed the "not").
User
Posted 11 Sep 2019 at 22:34

You should be able to edit your post by clicking on the appropriate symbol in green to the right of your post which brings it up in a form that allows you to make changes and then save.

PS It's the pen/pencil symbol which only shows and operates on your post as here.

Edited by member 11 Sep 2019 at 22:38  | Reason: To illustrate edit method

Barry
User
Posted 31 Jan 2020 at 16:12

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

 
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