Prostatitis or more sinister

Posted , 10 users are following.

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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