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  • 2 Biopsies now, any advice please

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    Old 09-24-2016, 12:20 PM   #1
    Tonyx
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    2 Biopsies now, any advice please

    Hi Guys,

    A bit of boring but necessary history. I live in the UK and am now 58 years of age, pretty fit, not overweight etc. Presented myself to the GP 12 years ago at 46 with increased urination during the day....DRE and PSA test, DRE negative PSA "normal" (Only found out recently that the reading was 1.2....I was so pleased at the time that I was "normal" I wasn't asking questions)....symptoms never really went away but learnt to live with them (after all I was "normal" right?)....fast forward 10 years now 56 and go back to doc with regular nighttime visits....DRE again neg but doc wants to refer me to the hospital as PSA 3.3 (cut off in UK for my age is 3) Stupidly I now realise I played the "bike riding, sex 24 hours ago" card and asked for a retest....this came back at 3.1...Doc could see my reticence about going to the uro so went along with my suggestion of PSA test every 6 months....cause in my warped mind how bad could .1 over the "safe" limit be? (See my schoolboy error there?).....So I go every 6 months for 3 more tests and every one is 3.1....So I get complacent and forget 1 visit so it's now 14 months and I visit the Doc and my 3.1 has miraculously elevated to 7.5 (Crap!).

    Now decide it's time to call in the experts....Doc does blood tests to rule out urinary infection (it isn't). Do lots of research Whilst waiting for hospital to get in touch and read of the free PSA test....NHS don't do this so find a private clinic for a new PSA test with "Free PSA".....This test came back at 4.3 PSA and a free PSA of 23%.(this is 2 weeks later)....Also had a consultation with private consultant from the clinic who are specialists in prostate health and problems. 40 minute consultation and DRE and he tells me "No Cancer"....."Great" I thought and skipped off.....I was happy to call it a day and cancel the upcoming hospital appointments My wife, although pleased had other ideas and insisted I stick with the program.

    So since then I have been called to hospital, had a cystoscopy (Test clear)...a CT Urogram (also clear) and a 3T MRI (something on the scan...radiologist scores it a PIRADS 4...) The Uro tells me that whatever it is it is small and contained within the prostate....So 2 weeks later a 12 core TRUS biopsy.....1 week later result negative. In light of the PIRADS score they now want to do a 36 needle template biopsy....I have now had this today and will now be waiting over 2 weeks (bummer) for the result....basically I have a few questions for you knowledgeable guys out there who may have already been there or just know "stuff"... the last 6 -8 weeks I have had a sore right hip that has been getting progressively worse...

    I'm a keen walker and around 3 weeks ago went with my wife on a gentle 3 mile stroll and the hip was burning by the time I'd finished...freaked a bit went to GP and he pushed and prodded.....shrugged off my bone spread theory and said more likely bursitis, gave me some strong anti inflammatories which I took for 2 weeks and they've done nothing.....and now to cap it all a bit of grumbling back pain has attacked me over the last couple of weeks and now is very uncomfortable when sitting and laying down and can and does wake me up ....Am I now imagining stuff? The pain feels pretty real and will wake me up....so Hip and back pain....

    My PSA was taken again last week at a pre op assessment and is now 8.3....I was hoping in light of my lowered second (private clinic) reading of 4.3, it might have been lower not higher than the original 7.5 although the blood was taken only 4 and a half weeks after the TRUS biopsy so this may have a bearing...I should also add that my prostate has been measured on Ultrasound at 56cc or 70cc including seminal vesicles......So this image is small and contained within the gland according to the MRI, and I know that a PSA under 10 isn't terrible, but I also know that a middling PSA does not mean low Gleason and the velocity scares me re bone spread.....Anybody have any insights while I'm waiting these interminable 18 days for the results?..Really sorry for the long winded Bio but just trying to give as much info as possible....Would really appreciate any insights
    Thanks
    Tony

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    Old 09-27-2016, 04:15 PM   #2
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    Re: 2 Biopsies now, any advice please

    Hi Tony,

    Waiting is hard, and no doubt your days are going by slowly while you wait for results. In the meantime, here are a few things to consider.

    Your current PSA of 8.3 is elevated, but not as high as you might think in view of the fact that you have a 56 cc prostate, which indicates benign growth. A rule of thumb for PSA produced by non-cancerous prostate cells is to divide the volume (56 cc) by 10, which yields 5.6 for PSA likely produced by health cells. Another competing rule of thumb is to multiply the volume by 0.067, which would result in 3.8. If your prostate behaves more like the first rule, the "unexplained" PSA would be just 2.7.

    Also, infection, which can be quite subtle and hard to identify precisely, can boost PSA quickly, sometimes to high levels, but also up just a little. Often the pattern of PSA is up and down as an infection waxes and wanes.

    Neither benign growth nor infection rule out cancer, but, with that earlier negative biopsy, you have odds in your favor. If you do have cancer, it is more likely to have been caught early and/or be a mild case.

    About that hip pain, I'll add to what Jack said. I do racewalking for fitness, and for years a muscle in my hip would be sore after an intense workout. Three years ago I was doing some emergency lifting and the next day had difficulty walking because that "muscle" was so sore. It turned out I had strained a ligament; I had probably been nearly straining it for years. I actually needed about seven sessions of physical therapy to get rid of the problem. I suppose it is possible that it could be due to metastatic cancer, but with all you have said and with my own experience plus what I have learned, that possibility seems remote.

    Good luck with the wait for the results.

     
    Old 09-28-2016, 03:06 AM   #3
    Tonyx
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    Re: 2 Biopsies now, any advice please

    Hi Guys thanks for your replies
    Jack, if my pains were old injuries that were now just manifesting themselves because of my heightened mental awareness that would be one thing, but the right hip pain (which has now also appeared on the left) is brand new.....Plus the back pain which I've had for the last 4 weeks and really screws with me at night (I'm 58 so sure I've had a grumbling back in the past, but never quite like this....I'm not a big believer in coincidences hence I'm freaking out)...Jack your diagnosis with a PSA of 2.7 only proves to me that when my reading was 3.1 2 and a half years ago I should have gone to the uro then and not shut my eyes to the possibilities.....Because the cut off for my age was 3, I reasoned that 3.1 was "safe"
    I don't know if HIFU is something that's even done in the UK, we're only now trialling "cyberknife" for the NHS although it is available privately in a few places.....I wish you well in your course of treatment and hope it all goes well for you.
    IADT, you are absolutely correct about the waiting, what makes it worse is the aches and pains which is a constant reminder that something is "wrong"....After the big biopsy on Saturday, on Monday afternoon my whole back "caught fire" I thought maybe kidney infection after biopsy, went to GP yesterday, not an infection, she also thinks my secondary tumour and metastasis fears are unfounded....When I'm talking to the Doc everything seems to make sense and you get a bit of relief...20 minutes later the monsters under the bed start to make themselves heard again.
    It's now been 3 months since my initial PSA jump and in that time I have made it my business to find out as much as I can about PCa....apart from trawling websites and forums like this one, I have read Patrick Walsh's book and "Invasion of the prostate snatchers" so I was aware of PSA density which you mention....I know that .1 is considered an "OK" figure and only when the figure rises into the realms of .15 do things start to become "sinister"....When I had my second reading (because I wanted a free PSA reading) and the PSA had dropped to 4.3 and the Harley St Consultant said unequivocally "No Cancer" I really felt that I was out of the woods.....But then the NHS got hold of me and now it is paranoia all the way....When a machine that costs 2million and a radiologist sees "something" on a scan you cant help but feel as though the "Witch Doctor" has put a curse on you. Trying to be positive about the current 8.3 reading, this comes only 4 and a half weeks after the TRUS biopsy, so I realise that the figures there could be a bit skewed, although I would have preferred them to be back down near the 4 mark
    I have discovered a lot about myself in the last 3 months....Especially that I am a glass half empty kind of personality....No getting past that, too late to teach this old dog a new trick now
    Many thanks for trying to "talk me down".....It is much appreciated
    Regards
    Tony

     
    Old 09-28-2016, 01:07 PM   #4
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    Re: 2 Biopsies now, any advice please

    Tony (re hip and back pain),

    All of us who have been dealing with prostate cancer can envision the stress you are under. It is possible that that stress is doing the mind-body thing and giving you real pain. When I was a child of about 9 I had learned about appendicitis, and I was worried that the night pain I felt in my stomach/abdomen area was due to appendicitis. One day I learned that appendicitis almost always causes pain on the right side, and I had been feeling pain on both sides - real uncomfortable pain. After that day, all the pain disappeared. I still remember it well.

    I hope you have the same experience.

     
    Old 09-28-2016, 02:30 PM   #5
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    Re: 2 Biopsies now, any advice please

    Hi again Tony (and Jack) - re HIFU in England,

    It is a bit on the early side to be looking at possible therapies. Please keep in mind that this prostate cancer club is quite exclusive, and we don't let just anybody in. If you don't have a diagnosis, you won't be admitted. Sorry, but that is the rule.

    That said, since you are thinking a bit about HIFU, yes, it does exist in England, and in fact one of its main pioneers/researchers/champions practices in the UK. His name is Dr. Mark Emberton (and I'm confident there are other HIFU practitioners in the UK). You can see those papers that have free abstracts of key points in his body of research by going to the site www.pubmed.gov (PubMed - for Public Medicine - run by the US government's National Library of Medicine, which is in effect an international online medical library) and using the search string - emberton m [au] AND HIFU AND prostate cancer - after clicking the Abstracts button on the right.

    Here's the problem, along with some encouraging news below, about HIFU: research through the summer of 2015 (the last time I took a thorough look) indicates that HIFU is highly dependent for success against cancer on the combination of technologies used and the manner of use, with all but one trial not achieving results competitive with other therapies. I and the wider prostate cancer community of patients, doctors, and researchers have been watching HIFU developments and research reports from the various international HIFU practices that publish their research (including Dr. Emberton's research) for many years, and, with one striking exception, those reports have been disappointing once they get beyond the first year or so after initial HIFU treatment.

    That's not the way the conclusions of papers read (to put it politely, they use "optimistic" verbiage), but when you look at results of five years follow-up or more (meaning here follow-up of patients for five years or more after their treatment, not five years or more of a group practicing HIFU) it is fact: this technology as it has been generally practiced is nowhere near as effective as technologies that have been practiced widely for prostate cancer, especially radiation and surgery. You will see papers on HIFU that cheer about their results with one, two, or even sometimes three years of follow-up, but beyond that, including follow-on reports by the same groups, non-recurrence success rates decline at a disturbing rate. (Keep in mind that patients judged to have "low-risk" prostate cancer (which is a formally defined, universally understood term) - those who probably should be on active surveillance instead of any treatment - should have a non-recurrence success rate of around 60% based on published research using recent active surveillance expertise and technology. (Active surveillance - essentially deferring treatment, hopefully forever, is improving steadily.) HIFU should have long-term results for low-risk men considerably better than that, and yet the HIFU trials generally fall short. We would like to see rates of around 80% non-recurrence or better at five years for intermediate-risk patients - those who really need treatment (except arguably for "favorable intermediate risk" or men with substantial other threats to health) - as pretty good evidence that a technology, such as HIFU, radiation, surgery, cryo-surgery, etc. is making a real difference.

    The good news is from the group led by Dr. Uchida of Japan, and you can also find his research at PubMed. After publishing discouraging earlier results with the Sonablate systems, including the Sonablate 500 system, that group finally achieved respectable success - arguably competitive with other technologies, with a certain version of the Sonablate 500 system, plus a certain kind of imaging, plus their special know-how. While you might be interested in several of their papers, their key 2015 breakthrough paper is on PubMed at https://www.ncbi.nlm.nih.gov/pubmed/25079940.

    While I feel personally that radiation, or, in the right circumstances surgery are superior choices, HIFU with the right technology package (including expertise) for the right patient may prove to work well, as it seems to be doing in Japan. I do not know whether Dr. Emberton and other HIFU practitioners in the UK have adopted the Japanese methods, but I would be a bit surprised if they have not.

    By the way, that approval of HIFU technology in the US was not exactly a ringing endorsement. HIFU was approved as a way of "ablating" prostate tissue (such as benign growth), but there was no endorsement of its effectiveness against prostate cancer. In fact, a US Food and Drug Administration advisory panel voted against approval of HIFU for prostate cancer in the summer of 2015. However, with the more recent approval for ablation, HIFU technology can now be used "off-label" for prostate cancer in the US. If it were me being treated with HIFU for an intermediate-risk case (going active surveillance for low-risk), I would at least make certain the doctor was using the same kind of technology that was successful in Japan, getting key facts in writing and signed. I would be wary of a public relations "snow job" (perhaps an Americanism, Tony).

    Tony, I'm hoping you will soon find this discussion of HIFU of no relevance to your life and that you won't be too disappointed by non-admission in a week or two to our club of prostate cancer patients and wives/supporters.

     
    Old 09-28-2016, 04:20 PM   #6
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    Re: 2 Biopsies now, any advice please

    Hi Iadt,
    I agree wholeheartedly concerning the pain and ones fevered imagination.....the thing is, about 2 months ago I noticed a lump in my groin area, my first thought was "lymph nodes" flew to the GP who said "inguinal hernia" (the gods are toying with me).....I have read that in some cases an inguinal hernia can (in some instances) cause referred pain to he hip and back.....Clutching at straws? Maybe.....The mind is a powerful thing...
    Thank you for your very in depth write up of HIFU.....to be honest it wasn't on my radar, I mentioned it in passing as Jack had mentioned he was veering in that direction. It's probably a bit too new and not enough long term data available.....I have noticed that clinical trials of HIFU are now being conducted in the UK, probably with the idea of making it a more mainstream treatment.
    Like you suggest, I'm hoping that the burly doormen won't let me into this particular club.....As are as treatment goes I think that my personality type would veer towards surgery anyway....My prostate has been giving me grief for years, so get rid of it would be my thinking.....My Harley St consultant in a strange twist of fate was diagnosed 3 years ago with a G7 while on a charity bike ride for PCa in the Americas.....He opted for surgery and is doing just fine.
    Once again thank you for your time in writing to help alleviate my fears....It is very much appreciated
    Regards, Tony

    Last edited by Tonyx; 09-28-2016 at 04:24 PM.

     
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