Prostatitis or more sinister

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Hi all, I'm a newbie here and I'm hoping that you fellow prostate sufferers can give me some guidance....I'll try and keep it short but there's a bit of background so forgive me. I'm 58 and first got my PSA checked out in 2006 when I was 48 and having some urinary problems....always having to look for toilets when out etc. PSA was 1.2 and I was told that this was OK.....symptoms never really went away but I learned to live with them. Fast forward 8 years to 2014 (age 56) and I'm now getting up regularly in the night....Go to Docs again...this time PSA 3.1.....Doc wants to refer me to hospital and I freaked a bit (probably stupidly....typical man burying my head in the sand)....Cut off for my age is 3.0 so I ask doc if I can agree to get tested every 6 months....she agrees....Have 3 more tests every one is 3.1...get complacent and leave it for 14 months...start to get a bit of regular backache so freak a bit and so get tested in June this year....surgery rings up following day and leaves a message on answerphone...please contact them (Uh Oh)...Its a Friday and by the time I see the message the surgery is closed....Sweat it out over the weekend....Monday staright on the phone....PSA is 7.5 (S**T)....Doc does a blood and urine test to rule out infection....Tests come back neg.....Now fast tracked to hospital referral (I was hoping they'd do the test again in case of error)...Whilst waiting as a control freak and obsessive I read up as much as I can on PC and come across prostatitis too....Just to gain back some control I read about free PSA and ring round to get a test....Find a clinic near Harley St....They'll do it but I also have to have a consultation with a urologist....(whatever it takes as I'm worried sicke by now)....Go to the west end to get my blood taken and then another trip the following day to consult with a very well known (if you mix in those circles, prof of urology).....Get my results from the nurse and in the intervening 2 weeks my PSA has dropped from 7.5 to 4.3 (different lab but even so)....Free PSA is 23%...The urologist spends 30 minutes with me.....then on my side....DRE and is pleased to tell me that I have a large prostate...hence the raised PSA and that in his opinion completely benign. I asked are you sure? His reply "don't worry I've felt thousands of prostates there is NO cancer".....I skipped out of there.

  Happy ending you'd think? Sadly it doesn't end there.....Get home to find I have 2 appointments with the hospital, one for a cystoscopy and one for a CT urogram (the paranoid mind takes over...what do they know)?....My wife makes me go ....Doctor doing the cystoscopy is rather brusque...try to explain about my PSA dropping he could care less....On the table trousers down....camera up the winkle.....5 minutes later he tell me "well you don't have bladder cancer"!!! WTF! I didn't think I did....fills out some paperwork says see the nurse and out the door.....The nurse reads the notes and says you need to go and book an MRI !   Jesus this is getting serious.....Go to book the MRI and when I go back to see the nurse she informs me that she has booked me for a biopsy...(I'm now really concerned)....Anyhow 2 weeks later I have had a cystoscopy (all tests clear) a CT Urogram (results go to consultant)  I've had the MRI.....But after reading "Invasion of the prostate snatchers" a great book I'd recommend for anyone with PCa or suspected PCa the authors talk about the ability of the 3T tesla MRI to pick up any "important" cancer in the prostate....with that in mind I ring my consultants secretary (I haven't met my consultant yet by the way) and explain my position regarding the lower PSA reading and 23% free PSA and ask if I can cancel the biopsy and see what the MRI throws up.....She rings back yesterday and says he agrees.....Now I'm thinking have I done the right thing.....Suppose I go for my meeting with him in a few weeks and he says we've seen something but because you were needle shy we don't know what it is....So more waiting and sweating and my bum still gets the needles......I'm really hoping that the PSA was raised by prostatitis and thats whats causing my current symptoms: ie lower back pain that moves around a bit....sometimes some groin pain, sometimes this is referred to the testicles, and sometimes a griping pain in the lower tummy.....Does this sound like prostatitis?    Anyone who can help me with the symptoms or answer any of my other concerns I'd be really obliged, as I'm really sweating now

   Sorry I've written a small novel, so if you stuck with it Well Done!

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  • Posted

    Not sure how much this will help. My PSA steadily climbed over 10 yrs, have a large prostate.  Had 2 biopsies during this period, both negative. PSA continued to climb. Another biopsy suggested, but by this time I knew about 3T MRI's and also really didn't want to have another biopsy. MRI came back with a suspicious area, uh-oh! Opted to have the third biopsy, this one "targeted" based on the MRI data. Came back negative. Also a big fan of the Invasion book and Dr Sholz. One thing I would suggest to take time to research your options, don't be railroaded by the medical professionals.

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    • Posted

      Hi Rich, thanks for your reply....I'm pleased to note that you are doing well with your "large" prostate....Do you happen to know what they have guessed the size at? The guy doing my cystoscopy put in his notes that my prostate was 50cc (don't know how he knew this from a cystoscopy...I know they can get it during ultrasound)....He did do the DRE so maybe he has "guesstimated" it from there.....I know that I read somewhere about the 3t MRI being able to show pretty much 100% of significant cancers (can't remember where I read it now...have read so much in the last few weeks) which is why I wriggled out of the biopsy....didn't fancy the blood in urine , stool and semen to be honest.....But if like happened to you, they say "we don't like the look of this", then I'll be sweating again....and still have to get the needles....Isn't life grand?.....Did you get your MRI on the NHS or did you pay privately.......?    Regards     Tony

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    • Posted

      Hi Tony,

          Prostate size was 98 cc according to the MRI, in the 80's according to an U/S. There are definite possible downsides to the needle biopsies which the urologists that I've seen tend to downplay. I'm in the US, so my health insurance paid for the first two (I was younger then!), and Medicare paid for the MRI and third biopsy. My biggest problem with the biopsies was hemmorhoids that didn't take kindly to being squeezed big time by the biopsy probe. First biopsy was off the charts excrutiating, insisted on GA for the second which worked great, and did valium and major painkiller for the third which also worked well.

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  • Posted

    As you have experienced, a lot of things can cause an increase in PSA, that's why even the doctor who discovered the antigen (Albin) has stated the results have been greatly misused and led to many unnecessary procedures. Once you get on the 'prostate treadmill', it can be difficult to get off. Finding the cause of the increase and treating prostatitis can be as vexing.

    I started experiencing urinary issues in my early 50s, was treated with a round of Cipro and sent on my way. PSA was low/steady (1.0 to 1.2), DRE normal. Over the next several years, the urinary issues came/went getting worse over the successive years (PSA stable). Sitting on any hard surface was uncomfortable (like sitting on half a golf ball). More prescriptions (alpha-blockers, antibiotics) but nothing resolved the issue long term and the side effects of the alpa blockers were worse than the symptoms they were meant to resolve.

    At 56 an abnormal DRE during annual physical turned up the treadmill to high (PSA still stable). Urologist wants to do a standard TRUS (blind) biopsy, does not 'believe' in MRI for prostate cancer. Fortunately, I resisted, continued my research and found a doctor that performed a multi-parametric 3T MRI guided biopsy. The results, a single, small (10mm) lesion that was gleason 6. That was 4 years ago. I remain on active surveillance - no change in the lesion, MRI each year. 

    While I monitor it regularly, I don't worry about/hardly think about the prostate cancer - opinions on low-grade, low-volume cancer like mine has been rapidly changing as have the procedures to address it (Focal Laser Ablation [FLA,] being one of the more promsing ones).

    The urinary issues however, continue to plague me - which is what brought me to this site. I have been following Rezum since it was in trials and Urolift since approval, but I'm not there...just yet. And yes, all of the symptoms you described, I've had from prostatitis. One cannot imagine just how irritating/frustating it can be - until they experience it.

    You may want to visit the UsToo Prostate Cancer forum. I would post a link, but that would cause this post to be sequestered. Just google those words and you can find it. A lot of good information on all things prostate related on that site, not just cancer.

    Good luck - and continue to take charge of your own health (and I liked that book as well).

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    • Posted

      Hi Tim, Thanks for your reply, glad everything is working out for you on active surveillance....I'm sweating it out at the moment (no different to loads who have gone before).....Thanks for the prostatitis symptoms....That's what I'm cheereleading for at the moment, hoping that's what has raised the PSA....Good luck in your future watching

         Regards    Tony

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    • Posted

      Another promising alternative for treating PCa is Proton Beam Therapy. See "You Can Beat Prostate Cancer: And You Don't Need Surgery to Do It" by Robert J Marckini

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    • Posted

      Thanks, I'm familiar with Proton - it's been around a long time (20+ years). There are strong proponents of it as well as those who state the 10 year+ data shows no statistical difference from some other focal methods of traditional (xray) radiation in the treatment of PCa. The proponents tout subjective information from some proton patients, giving the impression there are no/few with radiation side effects, but the data shows otherwise.If I had a more aggressive form of PCa, I would consider it - if FLA was not an option.

      I'm a believer in each person doing their own research and deciding what is best for them - as they (we) are the ones that must live with the long term consequencies. That is why I will remain on Active Surveillance for as long as prudent - for me. Treatments/options will only increase and improve and provide more data to help make a more informed decision.

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    • Posted

      Hi Tim,

             I would be interested in any reference you have re:  no statistical difference between proton beam therapy and some other focal methods of traditional (xray) radiation in the treatment of PCa. Thanks!

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    • Posted

      Unfortunately, any post that includes links is sequestered pending moderation, which in my experience may or may not get approved. This site appears to be overly cautious with links for some reason.

      As such, you would need to do a web-search using key words like "proton prostate cancer 10 year survival".  I discount those from institutions that have proton centers due to likely bias and look for studies from more independent sources like the NIH. If you use those search terms, you should be able to find several articles on this topic, including one from the NIH from 2014 that seems to be impartial and gives a good general comparison and talks about purported/actual benefits etc and the promise of pencil beam.

      The challenge of course is getting an 'apples to apples' comparison on both dosage and other EBRT types as well as severity of disease and any other treatment being received (ie androgen suppression) Additionally, comparing the outcome of patients with Gleason 6 lesions to those with 8+ is (IMHO) specious. As such, it is a challenge to find reasonably comparative 10+year studies unless the samples are very large and include a comparative number of similar patients.

      Proponents of all treatments put forth those studies that are favorable to them, but when you dig into the data most I have seen have a demostrable bias to that treatment and/or their collection methodology is suspect. For example, how they measure recurrence - biochemical recurrence (ie PSA value) is considered by some to not be a valid determiner alone, yet many studies cite that as their basis. I'm not a medical professional, so I certainly do not know - just that some in the field believe it is inadequate, which in turn makes it suspect to me.

      Following sentiment/info you can find in multiple citations:

      "Most of the time centers have followed patients only a short time (less than 5 years) or only report on “good” patients after they have been treated. Randomized trials, which select a treatment for patients and allow accurate comparison of the effectiveness of the various treatments, are few.. Many studies suffer from patient selection problems, which means only the “good” patients (those with favorable features after treatment) are reported on while “poor” patents (those with unfavorable characteristics found after surgery) are not included. These studies make it appear that the treatment is more effective than it actually is as they are only looking at the favorable patients."

      We should always remember that the majority of these centers are 'for profit' and while that does not mean they are 'evil' or dishonest, it is our responsibility to vet the information.

      Lies, damn lies and statistics... 

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    • Posted

      Wow. Thanks for your detailed and well thought out reply. I will do some research will your caveats in mind, and definitely look at the 2014 NIH study.
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  • Posted

    Hi Tony. Firstly there are what is called false positive PSA results. A Cystoscopy would also show how much the prostate is responsible for urinary problems. Sorry I can't help any more than that.

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    • Posted

      Robin, My cystoscopy showed nothing unusual, and I know I have an enlarged gland so I'm hoping that that's the problem.....Just got to "twist in the wind" and wait now

        Thanks for the reply

            Regards   Tony

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  • Posted

    Glad you are resisting the biopsy. Imagine putting a large diameter needle through the non sterile wall of your rectum, teeming with good and bad bacteria, and into your prostate many times. Doesn't that sound like a great way to get an infection in your prostate (prostititus), if you didn't already have one? At the very least, it should be minimized by doing it under the guidance of an MRI, and only then if the 3T MRI finds what looks like cancer.

    Neal

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    • Posted

      Hi Neal, that's exactly why I chose not to do it....that and the blood in the urine and stool for up to 5 weeks, sounded like a whole bunch of fun....I believe (although I could be wrong) that the 3T MRI will show up anything significant.....Just got to hope that mine is clear and that I've "dodged the bullet"

       Thanks for taking the time to reply

          Regards   Tony

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    • Posted

      Hi Tony,

      Im hoping you don't mind me hopping on your thread for some advice.... Sorry I can't offer any help. 

      We we are in a similar position to yourself although PSa results not as good but we do have some background that may contribute to that. 

       

      I am the six months pregnant wife who is very hormonal and terrified having spent hours trawling the net and scaring myself silly sad

       

      We have our first Uro appt on Tuesday with the possibility of a biopsy on the day if needed however much like yourself my Husband is not at all keen.

      The background to his story is several years of mild urinary problems ( flow,slow to start etc and mild back flank aches) . Back in May he went for a night out took an antihistamine had six pints( which I now am aware is a recipe for disaster)and ended up in A and E with acute urinary retention ,had to be catheterised and sent home. Catheter left in for nearly three weeks. PSa checked two,days after retention was 6.1 but told to ignore that reading as would be skewed by ' crisis' he had just been through.

      Catheter removed after three weeks.... Two days after removal lots of burning,stinging,urgency.... Doctor not worried, said urine was clear but never offered any antibiotic cover. Symptoms settled after 8 hours.

      Fast forward two months... Follow up PSa now gone up a point to 7!! Fast tracked to Uro. I researched and decided to get the free PSA checked to help decide if biopsy was necessary which has come back at 15 percent but I have now read that free PSa can be lowered

        with prostatitis. Like yourself I am so hoping that is what we are dealing with.Last week was the first time my husband ejaulated since his ' crisis' and there was a lot of blood in it... Again the doctor not worried and said to be expected with all he had been through a few weeks before....... We are hoping this signifies an infection or inflammation which is raising his PSa.

      Another thing which I think is relevant is that during my IVF I had a lot of testing done and although testing negative in the UK and never having had symptoms I was horrified to test positive on a very accurate Pcr test for Chlamydia. My consultant told us that this would explain my husbands poor sperm parameters and put him on six weeks of Doxycycline antibiotics.... The improvement was dramatic indicating infection ( he was never tested but after 24 years of having unprotected sex with me I think it's prudent to assume we would both have the same bacteria) . She then explained to us that this infection would reoccur as very difficult to completely cure as deep within prostate and he would suffer with prostate trouble later in life unless kept at bay with Doxy. 

      Sorry for waffling ....... Our dilemma is we feel the Uro will offer biopsy only next week and wanted to ask if anyone thinks we should wait and push ( or go private if they refuse) for an MRI? I have read the biopsies are not very accurate so would they be enough to give us piece of mind? As you say Tony if we wait and have an MRI and something is found we have to go for a biopsy anyway but at least it will know where to target. 

       Also with my husbands history of an episode of acute urinary retention,catheterisation and ejaculating blood only a few days ago I am worried a biopsy will inflame things further.....could all these things be keeping his PSa up due to inflammation and trauma?

      my head is spinning.... I want to be as best prepared as I can for the appointment so we don't just accept the first thing offered...... Any advice on what you lovely gents would do given his history would be appreciated . Not sure what else would be offered by UK urologists apart from biopsy?

      Tony, I sincerely hope you are dealing with an annoying case of Prostatitis and you will soon get piece of mind 

      Big hugs

      Ali smile 

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    • Posted

      I had a 3T MRI after my PSA continued to rise. It showed a suspcious area and it was "uh-oh. It seemed advisable to have (yet another) biopsy, MRI targeted this time. The biopsy came back negative. This is not to say that if your MRI does show something suspicious that you shouldn't get a biopsy, just that you shouldn't get too worried if it does.

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    • Posted

      Hi Ali,

            I don't have experience with a lot of what your husband is going through, but based on my experience over many, many years with 4 different urologists, I would recommend going slow and not being pressured by the urologist that you are seeing on Tues. Take time to research and think things through, perhaps get a second opinion. You can always decide to go ahead with a biopsy in a few weeks, and my understanding is that delaying a biopsy for a few weeks or even months would not make a difference. After two negative biopsies when I was younger, with contunually rising PSA, I opted to do a 3T MRI. It showed a suspicious area, so I went ahead with 3rd (this time targeted) biopsy, which thankfully also came back negative.

       

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    • Posted

      Thankyou Richp21,

      My gut instinct is telling me the same as your advice....... Appreciate your reassurance. It must be so easy to get snowballed into invasive procedures whilst in the consulting room........ And the need for an answer takes over..... Trouble is I'm not sure we would feel reassured by a biopsy anyway having read they are not that accurate. Did you find the cause of your rising PSa? 

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    • Posted

      Hi Ali, I am as much in the dark as you here....I'm on the Conveyor belt and trying to work out when to push the emergency stop button....When I first got my raised PSA reading of 7.5 sadly it wasn't my own doctor that pushed the panic button and referred me to hospital....(My doc was away at the time), so it was another doc at the surgery who set this ball in motion.....My own doctor (who I have spoken to since) tells me she would have waited a couple of weeks and re-tested (would maybe have saved me some major worry, and myself and the NHS a few bob)...The trouble is with searching the internet is that for every story that eases  your mind, another 2 pop up that terrify you. I would have thought that with your husband's previous history of urinary retention and possible infections your doctor would have persevered with the anti-biotics a bit longer and then retested......You dont say how old your husband is or why he was tested for PSA ....To do it after a bout of urinary retention seems madness. Trouble is with the NHS nowadays (I think) is they have to follow the NICE guidelines and it's like a computer flow chart ie "Has patient a raised PSA? Yes/No" etc etc and depending on the answers they arrive at a course of treatment....no allowance is made for individual cases....That's what is terrifying.....Instead of a PSA retest which may have cost £40.00 tops the NHS have now treated me to a cystoscopy, a CT scan, a 3T MRI and have invited me for a biopsy (which I have declined for the moment).....How crazy is that?......trouble is the paranoia runs riot....Do I need these tests or is this just the procedure.....? My own doctor when I told her about my second private PSA test with the lowered result and my concern over a biopsy advised me to have the MRI and cancel the biopsy (which I did).....trouble is you then think am I just prolonging this agony?....I have all the symptoms of prostatitis (never had it before) but the trouble is they could all be attributed to something else more sinister.

         Hopefully your urologist will see your husbands records and his track record and advise some more AB's and then a PSA retest, failing that try and get an MRI, but I imagine they have to justify the cost/benefit, and an MRI I'm guessing is more costly than a biopsy. I'm clinging to a few bits of driftwood at the moment....One: My dropping PSA which points to an infection, and my Free PSA which I'd prefer to be higher but isn't in the considered 10% danger zone (even 25% and over is no guarantee) Two: The private urologist I saw is a very well known figure (in the urological world anyway) and has written around 20 books on the subject, is a pioneer of robotic surgery and is considered a leading expert in the field of all things prostate. (I hasten to add I just got lucky finding him, it wasn't intentional)....He told me everything was fine and not to worry....I think why would he risk his reputation to tell me that unless he genuinely believes it? (but then the other voice inside my head says "he's only human and human's make mistakes" etc.). He must have seen a moment of doubt in my eyes and said that if I was still worried he could arrange for me to have a 3T MRI and that it would be around £1700.00

       I imagine you could shop around and find one cheaper but that's the going rate in London (or where I went anyway). I would have gone down that route, but the NHS have saved me the money......but now I'm slowly twisting in the wind and awaiting my results.....I do hope that everything works out OK for you both, and that your husband's PSA is just the result of an ongoing infection which he is obviously susceptible to......I promise to keep my fingers crossed for you if you do likewise for me

          Best Wishes   Tony

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    • Posted

      Yes, the urologists can sound very sure of themselves when they give their recommendations, but I suspect that often there are at least a few reasons that they will recommend procedures that they are familiar with and do frequently even though there might be other options that should be explored before making a decision. And I've been given absolutely misleading info at times that would have been a huge mistake to follow.

      My understanding is that all the diagnostics with regard to PCa, ie the blood tests, 3T MRI, and, yes, biopsies, can have false negatives, and most can have false positives. One thing to remember is that even if cancer is present, in a very large majority of cases they are very slow growing, not aggressive, and the patient "will die with cancer and not from cancer". One book I found extremely helpful is "Invasion of the Prostate Snatchers" by Dr. Mark Scholz and Ralph Blum.

      My best guess as to my rising PSA is that I have a large prostate, which, of course, can create other problems even when cancer free. 

       

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    • Posted

      I agree with what others have said. Take your time, read everything you can find on prostates and prostititus, and treatments on this site and others. Knowledge is power, and will help keep you from being snowballed. Above all, don't let them talk you into a TURP, unless you have had at least 2 independent consultations, even if you have to go private, and YOU AND YOUR HUSBAND UNDERSTAND WHY IT'S BEING DONE AND AGREE WITH IT. This can mean a life for you and your husband with him being impotent, and incontinent. You need to take the time to do this correctly. As others have written here, even if the worst is going on, and it's really prostate cancer, it is rarely aggressive, so you have the time to gather the information, and do this properly. Most likely, it is not serious. PSA goes up for many possible reasons, also including having a large prostate, stress to the prostate from infection, sex, too much sex, and not enough sex, catheter usage, etc.,etc. Perhaps even a full moon. Certainly what your husband did, and the catheter can cause it.

      Neal

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    • Posted

      Also, glad you are resisting the biopsy. Imagine putting a large diameter needle through the non sterile wall of your rectum, teeming with good and bad bacteria, and into your prostate many times. Doesn't that sound like a great way to get an infection in your prostate (prostititus), if you didn't already have one? At the very least, it should be minimized by doing it under the guidance of an MRI, and only then if the 3T MRI finds what looks like cancer.

      Neal

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    • Posted

      Neal  I agree with everything you say.  Also the doctors don't look at the full picture.  Prostate cancer can take 10 to 15 years to cause a problem.  The surgery to remove it causes more problem. Why have one surgery to have more problem.  I think every man should read the story.  I want my prostate back before any man think about having his prostate worked on.  Get the information  Ken

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