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PSA rapid rise to 20, no explanation.

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 07:57

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 15 Sep 2018 at 23:14

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 15 Sep 2018 at 23:33
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 19:03

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 15:20
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 18:46
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 18:48
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 19:00
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 19:20

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).

 
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