Should I have a prostate biopsy?

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Introduction

I’m 70 and have a PSA which was at 4.6 when I was 66, and while it has been regularly monitored over the past 18 months or so has been moving up and down between 6 and 7.  My doctor thought that I should be referred and I have had two hpital appointments, but I have so far decided against having a prostate biopsy, though it is obvious that my local hospital’s oncology department would like me to have one.  The health worker I saw at my first hospital appointment was happy to discuss the issue with me, but I suspect the consultant I just saw probably thought I should stop wasting his time and get booked in for a biopsy without further delay. 

I have received information from those two appointments, but I have obtained much more information from online research.  Based on studying a number of online medical reports over the period 2008 – 2014, it is evident that there is increasing prejudice, at least in the US and Australia, against the use of prostate biopsies.  The primary reasons for this seem to be an increasing risk of serious infections from the most common type of biopsy, a growing recognition (though this may be controversial) that psa screening and biopsies are ineffective in reducing the incidence of terminal prostate cancer, and that screening and biopsies contribute to massive ‘over treatment’ of prostate cancers

 

Summary of Statistics (some of which may be controversial but all of which are based on (my interpretation of) studies published in urological journals, research reviews and conference speeches by leading urologists).

Of every 100 men who have a prostate biopsy:

·         97 didn’t need it (that is, they don’t have a prostate cancer requiring treatment)

·         6 will get a serious infection as a result (a figure which has doubled in recent years), which will cause them to be hospitalised, and from which a very occasional man will die, while others (we don’t know how many) will have persistent painful side effects

·         between 17 and 22 will be offered treatment that they don’t need, as a result of which about 25% of men in their 70s will become incontinent or impotent.

 

The Perceived Indicators for Biopsy

Primarily a raised psa; a psa which has increased rapidly over a fairly short period, typically a year; smoking; family history of prostate cancer; age (considered with the other factors).  I have a raised psa, but it’s not dramatically high – it’s been between 6 and 7 over the past 1 ½ years, and it has not increased dramatically – it was 4.6 five years ago.  I do smoke, and I am 70, but I am generally in good health, and there is no history of prostate cancer in my family that I know of.

 

Statistics Based on Recent Urological Papers

Of every 100 men who have a biopsy, between 75 and 80 have no cancerous cells and didn’t need the procedure; 20 to 25 will have cancerous cells found on biopsy BUT a large percentage of these men will have a tumour which develops very slowly, will not be terminal and doesn’t really need any treatment.  Only a small percentage will have an aggressive tumour requiring immediate intervention; the Harvard School of Public Health, in a 2014 paper, put this percentage at 10 – 15%, or 3 men out of the 100. 

This means only 3 out of every 100 men who have a biopsy really needed it.  And there are two other real concerns.

1.       The one certainty with prostate biopsies is that 100% of the men who have them will have ‘side effects’.  Some will be shortlived and not really a problem, but some will be painful and longer lasting, and some men, currently about 6 out of the 100, will be hospitalised with serious infections, and the very occasional one will die.  There are no statistics for the number of men receiving treatment for post-biopsy infections at doctors’ surgeries.  I don’t necessarily see this as a reason not to have a biopsy, because obviously if you really need a biopsy to diagnose a terminal cancer then it’s worth putting up with the side effects.  But do you really need it?

2.       Most worryingly, doctors apparently can’t tell from the biopsy result whether cancerous cells denote an aggressive tumour which requires immediate treatment, or a slow developing tumour which probably does not need any treatment.  As a result, as I understand it, all patients with cancerous cells may generally be assumed to need immediate treatment, such as hormone replacement, radiotherapy, chemotherapy, even though 85-90% of them don’t need any treatment.  Research papers suggest that in men in their 70s, 25% who have this treatment will become incontinent or impotent as a result.  Many of these men will suffer these consequences despite the fact that they didn’t ever need the treatment they were subjected to.

 

It’s also worrying that at two hospital appointments the issue of what happens after the biopsy has not been raised, even though it was clear that both the people I saw thought I should have a biopsy.  Maybe they would say that it would have been raised if and when I agreed to a biopsy, but given concerns about receiving unnecessary treatment, I feel it should have been raised at the time the issue of having a biopsy was raised.  Would they have explained to me that if cancerous cells were found, they might not be able to tell whether I needed treatment or not?  Would they have told me that there was a risk (if not a certainty?) that I would be ‘offered’ treatment that I might not need?  Since they did not have that conversation with me I cannot answer those questions.

Conclusions

My psa is raised but not highly raised and it didn’t move up fast, so I feel it is not at present a firm indicator of the need for a prostate biopsy – it’s inconclusive.  The only additional risk factor I have is that I smoke, and I suspect that is often overplayed by the NHS.  According to NHS statistics, I should be suffering the ill effects of smoking by the age of 70, in the form of early signs of lung cancer, but when I had a chest scan a year ago it was clear.  In addition I have an enlarged prostate – which was determined at my first hospital visit not to feel cancerous – which means I would have a heightened psa anyway.

I have been offered another appointment by the hospital in six months, and I am going to take that up, but unless things change I think that has to be the last for the moment.  It’s pointless me trooping up to the hospital every six months when I don’t want a biopsy – which is all they can do by way of diagnosis – and there could be people with aggressive tumours urgently needing those appointments.  So I need to decide over the next six months finally, whether I am going to have a biopsy or not. 

The hospital has asked me to have another psa blood test before I go for the 6 month appointment, but I have asked my GP for three-monthly psa tests, so that I can get more of a feel for movement on the results before I go for the hospital appointment.  If my psa is suddenly moving up rapidly over the next six months, then, depending how fast and how far it is moving, I may agree to a biopsy.  Otherwise it is unlikely that I will, in which case there is not much point in the hospital continuing to see me – though I will ask my local surgery to continue monitoring me with 4 or 6-monthly psa tests.

 

At the age of 70 I still work full-time (for myself), and having unnecessary treatment for prostate cancer would certainly have far more of an impact on my life than having a slow developing prostate cancer which would not affect my health or life expectancy, and might even have more of an impact in the short term than having an aggressive prostate tumour.  So it’s a numbers game.  None of us is going to live forever, and at my age quality of life is more important than lifespan.  Younger doctors especially often don’t take account of this, and assume that keeping you breathing, no matter what state you are in, is some sort of medical triumph.  Not surprisingly, there are lots of older people who don’t see it that way!

 

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  • Posted

    Terry,

    Also, if the moderator approves my prior post to you....I would suggest that you read it.  It is being reviewed because I added a website link to the US Preventive Services Task Force review on the effectiveness of prostate cancer screening and treatment.  It is an unbiased review by medical physicians with specialties in epidemiology who reviewed all the available research.  I would add the link, but rather than have this post go to review by the moderator I would instead simply suggest that you look it up and read it from top to bottom. 

    In my work I distinguish between fear and anxiety.  Fear is something to be avoided because it is dangerous.  Anxiety is the proverbial paper tiger where we feel fearful, but there isn't a real danger. 

    Treating anxiety, as they do with prostate cancer treatment, via surgery, radiation, hormonal deprivation; in my mind is nothing short of malpractice.  Anxiety (regarding low or intermediate grade prostate cancer) is best treated by a therapist.

    My Best To You

    • Posted

      Hi Carl. Not treating intermediate that is Gleason 7, whether 3+4 or 4+3 seems risky to me. Please would you expand that part of your comment.
    • Posted

      Hi George,

      I just came across this study on active surveillance for intermediate risk cancer.  Thought you might be interested.

      Medscape Medical News > OncologyStudy: Surveillance Is for Middle-Risk Prostate Cancer Too

  • Posted

    Hi George,

    You asked about not treating intermediate 3 + 4 or 4 + 3 prostate cancer and my reasoning.  First, this is a choice that I made and I am certain might not be the best choice for others.  My Gleason score was 3 + 4 as opposed to 4 + 3.  There is a difference and the difference is significant.  In mine the predominant cancer found (you'll recall it was in two of eight core samples and was relatively small) was 3.  They don't tell you this, but in the US they no longer use 1 or 2 grade, so the lowest you canvery small.  I know this because I retrieved digital copies of my biopsy slides and looked at them to compare them with the Gleason originals.  I also had a second reading by a pathologist who, unfortunately, was not blind to the original pathologist's report.  My read was that the 4 was actually between 3 and 4 (just my read).  Also, in the US, pathologist's are very concerned about malpractice and tend to upgrade a pathology report for fear of being sued (it is called grade creep).  So my read was that the bulk of my cancer was grade 3 (low risk) and that a minute part was graded 4 (intermediate risk) by a person who would not wish to underdiagnose or accurately diagnose if there was concern for a law suit (ever present in our system).  Then, in my reading of the US Preventative Services Task Force, I saw that it was essentially ill advised to treat low grade prostate cancer and questionable whether there was any real benefit  to treating intermediate cancer. 

    And to go back to an earlier post, short of surgical removal and clean margins, virtually any mechanism designed to "fight" cancer basically provokes the cancer causing cells that divide relatively quickly and mutate (they are already mutated) easily into more aggressive cancer.  Finally, I had my slides read to determine whether the cancer was haploid or diploid.  The cancer cells were diploid and that was the final domino that led me to not pursue treatment.

    So, it was an interesting foray into the rhealm of conventional medicine where I, personally, feel that I dodged a different bullet than many of the writers to this forum.........rather than dodge cancer, I dodged treatment and the collateral damage that it seems to so often produce.

    And, as a result, I am still alive 20 + years later, still have no symptoms, enjoy my life without limitations, and, occasionally, experience a touch of anxiety......oh well, life really does have its uncertainties.  My Best To You

    • Posted

      Thank you very much Carl. That is a very informative and full note and I think many will be greatly helped by reading it .
  • Posted

    I find it amazing how most commentators here seem to know so much more than the trained and dedicated professionals that are trying to do their best for their patients...and this is achieved after just a small amount of research on the internet...these professionals must be really slow learners as they have studied this subject for many years and they still don't seem to get it...

    I really don't understand why everyone continues to go back for followup appointments when it seems that the majority of the advice being provided to them is not relevant to each as an individual...

    May I suggest that those who oppose suggested treatments etc. simply go and live their lives as the choose and free up the overloaded health systems for those that are in need...

    • Posted

      Hello Kombi,

      I sense a sarcastic tone in your message.  I am sorry to see that.  I don't in any way suggest that my choice is best for everyone.  Many people engage in many forms of treatment and that, of course, is their choice.  The problem that I have is that people do so without informing themselves.  The United States Preventative Services Task Force is in my opinion a must read as it is the only unbiased piece of information available.

      Personally, I've read urology textbooks, spoken with professionals including surgeons, oncologists, etc.  Because both of my children are physicians they have provided me with access not to just the internet, but rather to the journals that physicians and physician specialists read. 

      But, again, that is just me and the way that I work.  I need to conceptually believe in a treatment and see evidence that supports its use before I'll participate. 

      In any event, I wish you the very best. 

    • Posted

      Things are perhaps not as simple as that. The professionals know a great deal about their spectrum of medicine and surgery. They are necessarily blind  to some therapies such as personal intolerances in diet. There are also diseases not understood or not recognised within standard medicine. Thus we get a fringe area where the patient must shift for themselves. 

      Then there is the all too human problem of doctors not all being equally good diagnosititions and not all being at their best each day and all day. And so on. 

      From the patient's point of view our quality of life can be at stake, even our lives. It is perhaps best to take a close interest. We may still conclude that the professional's advice will be taken, but on occasion we may not.

    • Posted

      Hi Carl,

      Personally,  I don't read Kombi's remarks as him being sarcastic.   There is more detectable I think, both irony and frustration.   And I can relate to that.

      Seems to me,  that there may be what is at first an  un obvious dividing line between the two camps,  I. e. the Watch and Waiters and the Conformists ... And that is... economic status.

      Those of us,  myself included,  being treated in the Public Health/Hospital System  and who do not have the financial resources to step outside of it,  simply do not have the luxury of demanding or holding out for a scan before biopsy.  We are obliged to both trust the judgement of our Practitioners and conform with their recommendations.  Perhaps the Govnmt will not fund MRI without prior biopsy?  I don't know.  Suffice to say I had to cover a $300  

      'gap ' anyway ( even though it was ' No scan without biopsy ' ).

      We are both in Australia and where I am and no doubts where Kombi is they,  the Med Profession / HealthService,  let you know that if you defer treatment then you will go right to the bottom of the waiting list.  And if you outright decline,  then you will need a new referral and will have to be re-assessed before you can even get on the Waiting List.

      So there's you W&W's saying "Oh,  we may do this, or we may order up that ...  Or we might drop this Chappy and see that one " ... And we don't necessarily believe what they're telling us,  anyway ".

      And then there's us. ... Right in the thick of it and with no alternatives.  And the real irony is ...  that we still care about you.

      Regards

      Dudley

    • Posted

      I could not have said it better, well said.

      In the public health care system you have to trust! After all you do get the choice of urologist after referral, so thats one good thing in parts of the EU. Its better out than in if its growing!

      Tommy

    • Posted

      Hi Dudley,

      Good old Australia.  Got a real Australian buddy from traveling South America in 1974-75.  I miss the language "chappy."

      I am sorry to hear that the socialized medical system of Australia has these drawbacks and would not wish in any way to lord the American system over yours.  Our system is profoundly broken anyway.  Mandatory health insurance in this country runs about $6,500 per person and that is prior to any service whatsoever.  Then there are deductibles which are somewhere between $500 and $5,000 per year, also paid prior to receiving any service.  Then there are malpractice claims that drive up the cost and ensure overtreatment of just about everything.  I have often said that the patient in this country, in order is:  investors in insurance companies, malpractice attorneys/courts, practitioners, and finally patients. 

      It would be nice to get back to medicine as I knew it when I was a kid.  You went to the doctor with a real complaint, received whatever the doctor prescribed (you also believed that he wasn't compromised and he largely wasn't), paid your fee, and generally got better.

      I am choosing for my cancer what most on this site would view as a scary alternative, WW.  With that said, it aches in my heart to see very young guys get diagnosed and railroaded because of misplaced fear into treatments that will harm them for life, I also care deeply about these guys.

      I only wish that there was a way to slow down the runaway train from diagnosis to treatment so people could read The US Preventative Services Task Force Recommendations in their entirety and then really address whether they are treating an aggressive cancer FEAR (4 + 4 or higher Gleason, haploid cancer cells, less than two year doubling time, etc.) OR whether they are treating an indolent, slow-growing, non-threatening cancer ANXIETY.  My personal opinion is that we should be very responsive to fear because it is what we feel when danger is facing us.  Anxiety, on the other hand is a paper tiger and really doesn't require that we do anything other than talk with a re-assuring mate or therapist, and ensure that it doesn't morph into something dangerous.

      With all that said, my best to you, Dudley.  You live in a truly beautiful country.  If you're ever in the states, look me up. 

      By the way, were you the one who wrote me about the motorcycle?

      My Best To You And To Your Health,  Carl

    • Posted

      Hi Tommy,

      In America I have choice, if I can afford it.  I am glad you have some choice in the EU.  And I would certainly support your comment with what I perceive to be the ommission included "It's better out than in if its growing (aggessively)."  Realistically all cancer grows.  Some grow very slowly (indolent) while others grow very quickly (aggressive).  So mine, which I believe to be relatively indolent is growing slowly and will continue to grow until I either die of prostate cancer or something else.  I just think it important in these discussions that we encourage recently diagnosed people to slow down, do their own research, and attempt to determine whether their cancer is growing aggressively or merely growing before pursuing life altering treatments. 

      My Best to You Tommy,   Carl

    • Posted

      Hi Carl,

      The most apparent and valuable common denominator of all,   is that despite our different exposures, options, experiences,  outcomes and philosophies ... We all care and want the best for each other.

      You have again mentioned the distinction between anxiety and fear.  It seems apparent to me that W&W's fear complications arising out of intervention and/or even confirmation of disease;   and seek to come onto Forums hoping to find like-minded non-interventionist people who will bolster them against their resultant underlying anxieties.  

      That is fair enough.  But each and every one of them is ignoring warning bells.   Not necessarily that the ship is going down,  but it has at least hit an iceberg.  And the crew are standing around without life-jackets chatting.

      Slightly ahead of them,  some still on deck others in the water,  are the crew from the SS Conformist which similarly has hit a 'berg,  been holed and is inexorably going down.  Those in the water are waving to the crew of the SS W W and shouting  " get your jackets on ".   How could they do less ?  But they are being ignored.

      And that's all there is to it.  So from the very beginning,  I have felt that discussion between the two crews is pointless.  

      Those in the water want to talk about lifeboats.  Those on the W W want to talk about the Menu over a pink gin.

      Regards

      Dudley

      P. S.  Yes that was me,  either on the m/cycle or down at the beach.  Not exactly out of a Neville Shute novel,  but leaning that way.

    • Posted

      Very nicely put dudley70181... sadly I am one that fell into the cold dark murky waters when PC Iceberg was hit... head first straight over the 'blunt' end of SS Life... talk about a stern reality... from where I am SS WW is somewhat distant and the onboard chatter seemingly drowns out those on my advice boat... now it's all about hanging on to the floating debris and listening to the background music...
    • Posted

      Hi Dudley,

      First, the motorcycle.  Bought one in 1966, a 200 cc Triumph Spitfire geared for dirt, and rode it almost 5500 miles through England, Central Europe, up into Scandinavia, crossed over from Finland into the Soviet Union (why they let a Yankee on a white and competition orange motorcycle enter their country during the cold war is beyond me) rode to Leningrad, Moscow, Karkov, Kiev, out through Chezkoslovakia, Hungary, Romania, Bulgaria, Turkey and back to Central Europe.  Whew, and all on a dirt bike........see, I really am ignorant.

      To the point of your remarks.  I like the metaphor of a ship that hits an iceberg.  Yes it is a little like my aging body ran into an iceberg.  Personally, I first put on a life vest, sounded the alarm, and went down below to examine the damage to the hull.  All ships have a little leakage, and in my case I could see that the hole was relatively small, but nevertheless leaking.  I went back up on the deck, had an iced tea (I don't like gin......reminds me of a pathetic experience in high school.....more evidence of my ignorance), and go back down every so often to inspect the hole.  The hole does make me a little anxious, but it is a small hole and it is my belief that my ship won't sink during my expected lifetime (we'll see).  

      The concern that I have isn't for the people with aggressive cancer who get it treated (huge hole from the iceberg, boat is going down, and they jump into treatment).

      My concern is for people who don't realistically guage the size of the hole, trust their doctor (remember, I am in the US), and because of anxiety and a ready willingness of US doctors to treat anxiety with a scalpel rather than a rational assessment of the danger, jump into treatment.

      I'm not really looking for someone to shore up my belief.  I am simply concerned for the dramatic overtreatment of people in my country.  At its peak, prostatectomies were being undertaken over 400,000 per year in my country.  At most, 30,000 plus people use to die of prostate cancer.  That, in and of itself represented 13.5 times overtreatment and twenty to thirty years later just under 30,000 people die each year (at a time when you'd expect all those prostatectomies to have saved somebody).  

      So, in the US there are a lot of people in the lifeboats, suffering lifelong consequences, and their ship wasn't even going down.

      Don't know what will happen with my ship......and, as you can see, I've done a few ignorant things in my life.  And I don't know whether what I'm doing would be right for another passenger.  

      Live and Let Live,

      My Best to You,  Carl 

    • Posted

      Hi Carl,  

       ' Yes '  I say tentatively.... ' I think I remember the Spitfire ...with its comparatively smal tear drop tank ? '   It is from the era when firstly I had a C12 and then a Norton SS 600.  My unaffordable ' lusted after ' machine was a 500 single Gold Star running on Castrol R.  Oh yeah !

      Anyhow hats off to you,   for that epic expedition!, and thanks for sharing.  

      ( Now,  how many of their names can you remember ! ? )

      Yes you are right ... Live and Let Live.

      And Oh yes,  I know something you will recall ... Ignorance is bliss !

      With very best wishes,

      Dudley

       

    • Posted

      Hi George,

      Thanks for the support and the recognition that life is complex and that physicians are complex people with varying degrees of expertise or lack thereof.  I have been researching prostate cancer for over twenty years with access to medical journals provided by my two physician adult children.  

      I was talking with my life partner Suzanne about the prostate cancer forum and she mentioned that she thought she knew you through your partner Mary on the L.S. forum.  Small world.

      My Best To You, Your Partner, and Your Collective Health,  Carl

    • Posted

      Hi Carl and Susanne

      Thank you for your kind words. I receive the first part gratefully. Susanne must have found another George who writes somewhat like me. My wife is not Mary unless that is her pseudonym and she has not told me of LS.

      I wish you both all the best, George

    • Posted

      Hi George,

      Whoops. Carl didn't know apparently that I meant your "friend" Mary from the Chatroom group (though she "retired" from it a month or two ago). Mary often mentioned those people with whom she enjoyed talking and your name was often spoken. I hope that you are doing well! --Suzanne

    • Posted

      Dear Susanne,

      Thank you. Now I can place you too for we are both in touch with Marey. I will complete this note in a PM.

       

    • Posted

      I agree wholeheartedy that one's financial situation dictates their choice of diagnosis and treatment. I also acknowledge that different countries have vastly different records of treatment - the US seems to massively overtreat, perhaps out of fear of legislation? I had an MRI which was done on our NHS so did not cost me anything - I am very surprised that this is not available in Australia, especially as most of the pro-MRI research seems to come from Oz.

      The difficulty with this disease is trying to ascertain whether you have a tiger or a pussycat. If we had any surefire way of knowing this we could all make an informed decision.

      I do, sincerely, wish everyone the very best.

    • Posted

      Hello David,

      Firstly I hope you are going along O K  ?  And would be interested to learn ultimately of what treatment options are/were recommended for you and what parameters you have set for yourself regarding eventual treatment,  if any.

      Secondly, thanks for all best wishes.  

      I formulated a detailed and consequently lengthy reply about the vagaries of the Australian Health Service Public / Private service fee scenario ;   but the  ' elapsed time over-sensitivy ' of my ipad touch screen when logged in to Patient U K wiped the lot and I'm sorry,  but I just cannot bring myself to repeat it.

      Suffice to say its all about State v Federal funding,  Country Doctors contracted into but not Resident in Rural Hospitals, entry levels based on geographical location,  X -ray service providers and waiting lists in Public Hospitals  v seeing the same Consultant privately and then being inducted into the Pulic System by that same Practitioner,  for follow ups.  It's an unfair,  , torn safety net,  financially inequitable,  Class conscious and Administratively cumbersome system.

      There is absolutely nothing in our system both cost-wise and expediency-wise,  that beats lying down in the middle of the road , being scooped up by an ambulance and taken to a City Teaching Hospital.

      Difficult to pull,off that scam with PCa though !

      In fairness though I should add that generally speaking the Doctors and Med Staff are top drawer,  or next to it.

      Regards,

      Dudley

    • Posted

      Thanks for your concern Dudley. I am currently in limbo, waiting for an appointment with my Urologist, who seems to have been on a very long holiday. Since posting my long-running 'The path I'm taking' I have managed to get an MRI on our public health system. The results (which were read over the phone) show a tumour in the left apex, probably T2a with no visible extension into the seminal vesicles. My PSA has since gone up to 8.3 so I am veering, reluctantly, towards treatment - my inclination is for some sort of focal treatment at present.

      Kombi cruiser raises the point that this forum tries, perhaps unsuccessfully, to accommodate a wide range of people touched by PCa - from those in their 70's with a slightly raised PSA who are unsure whether to have a biopsy, to those dealing with recurrent and aggressive PCa. Your ship analogy is a good one but those on deck are not concerned about their G&T's - they are worried that the water is very cold and that they might be best off staying put.

      Regards to all

    • Posted

      I'm sorry to learn that you have been ' symptomed ' into a corner David.  I was rather hoping you'd get away with it,   despite believing the initial signs weren't favourable and that you were risking all your chips,  by playing zero.

      So now I imagine,  the trick is going to be finding a Practitoner who will treat the tumour without, excuse the pun,  plugging biopsy.

      I am sure that every last one of us who were vigorously flagging down your locomotive before it would become a runaway train,  sympathise with your situation and wish you the best possible outcome.

      In case your research didn't uncover this Paper,  I advise details as follows,  hope it is allowed to be posted and that,  you will find it to be informative :

      Hindawi Publishing Corporation : Clinical Study,  Analysis of Preoperative Detection For Apex Prostate Cancer By Transrectal Biopsy.

      Good Luck David.  The Community has benefitted from your involvement and I hope you will both keep us posted and take heart from the unquantified best wishes sent your way.

      Regards

      Dudley

    • Posted

      Hi David,

      As one who has stayed put on the deck for twenty to twenty five years, I am curious what you have learned that has you considering jumping into the water.  What are the signs of aggressiveness (PSA doubling time, Gleason score, haploid or diploid), how old are you, and what do you estimate your life expectancy to be?

      I read an interesting article on the YANA website that says that in order to "save" a person from prostate cancer (eg, add 5 years to their life) so many people have to receive treatment  unnecessarily that the average gain is .6 month.  Then again, you could be the one who gets an extra five years.  

      Again, i am curious what are the indicators?  My Best,  Carl

    • Posted

      Thanks for your post Carl,

      I have drawn up a table of factors which put me into either the low or intermediate risk categories. My low risk indicators are PSA (<10), psadt="" (="">3 years) and a -ve DRE. My intermediate factors are my age (56, so I won't stay under 10 for long) and family history (father had RP in 60s). If I knew my GS that would nail it one way or the other.

      I have read your posts with interest as I am a kindred spirit - the number of people treated to save one life seems disproportionate ( the study in June 2012 published by NEJM showed that 27 people were treated to save one life). This sounds reasonable until you delve into the side effects of the treated group - of 364 men treated, 2 had blood clots in the legs, 2 in the lungs, one had a stroke, 6 required blood transfusions, and so on. I am also very fearful of biopsies - 1 in 1000 will die and 3% will be hospitalised with sepsis. These incidences are both increasing! Another factor I cannot ignore is that every individual's decision is essentially a binomial event - once it is made you will never know the outcome of the alternative course of action. Therefore, it is incorrect for people to say that 'PSA testing saved my life', or 'X treatment saved my life' because the alternative will never be known. People are constantly seeking to justify their decisions (a phenomenon known as cognitive dissonance). Finally, I do not consider AS or WW as denial; rather, they are considered options which are now recognised as viable treatments by most urologists. All the best, David

    • Posted

      The differences of opinion on this general issue are,  by reason of the conflicting nature of Statistics and Personal Experiences,  unresolvable.

       Respective points of view and argument are being repeated and whilst being respectful of both opinion and strength of belief,  I wish there was a final word ( not necessarily mine ) on this topic. 

      This debate is going nowhere and I can't easily see how we are now helping anybody.

    • Posted

      Dudely70181 I sadly must agree with you regards the differences in opinions... perhaps it's time for all of those that simply want to wait and see rather than go through the suggested processes etc. to vacate the medical systems in an attempt to free up the systems for others in need...
    • Posted

      Hi David,

      You are clearly a kindred spirit and speak a common language of stats and psychology to me.  I'm curious what is your training and profession, as well as where you live?

      First, I'd like to respond to your risk indicators.  At 50 my PSA was 10.  Now, twenty years later it is 86.  I still have no symptoms and there is still no evidence in an MRI that my cancer has escaped the capsule of the prostate.  Some cancers produce a lot of PSA, others produce very little.  I have a friend who is in his mid seventies and has a PSA approaching 250, also with no symptoms other than having to urinate twice each night.  PSA grows as cancer grows, hence doubling time is an indicator only of rate of growth.  A number is not a reliable indicator of danger.  You can plot PSA rate on a logarithmic graph and see whether the growth rate is accelerating or not.  Growth rate acceleration across numerous data points is a cause for concern.  PSA velocity is a conceptually flawed strategy for determining aggessiveness.  An absolute numbe for PSA is also conceptually flawed.  Your doubling time is greater than three years, but what is it exactly and how many data points do you have over what period of time.  Is your doubling time changing?  Also, what were your father's statistics in addition to his age.  Was he one of the many who was knee jerk over treated or is there evidence that his cancer was truly aggressive?  My older brother went through radical treatment and now laments the choice because his stats indicated a very low risk cancer.  Was his "life saved?"  It concerns me your use of the phrase "save one life."  There is no such thing.  Prolong life, maybe.  

      Ultimately, if you proceed with a biopsy it should be a guided one, color doppler with you wide awake) is a very informative strategy.  With the eight samples that they took from my prostate I could see the biopsy needle hit "hot" spots directly and only two came up with identifiable cancer.

      In Dudley's metaphor, unfortunately, the water is filled with quality of life altering creatures that, pretty much inevitably get you.  They likely will not kill you, but they definitely harm life and can kill your spirit.  

      From my view on the deck, I still retain many treatment options if and when my cancer morphs into something more aggessive or life threatening.

      Keep In Touch and I Wish You The Best With Your Decision.  Carl 

    • Posted

      To Dudley and Kombi,

      I will suggest a different metaphor from Dudley's sinking ship.  There is evidence of an internal skirmish in each and every one of us that we are concerned could break out into an all out war and kill us prior to the time of our natural death.  This poses a very real concern that frightens all of us to the core.

      This group consists of people who have been on the periphery having just learned of the possibility of cancer, those who have been tested for indicators of cancer and as yet the cancer has not been confirmed, those where the cancer has been confirmed via biopsy, those who have chosen watchful waiting, those who have chosen treatment, those where treatment has been deemed successful to date, those where treatment has failed, and those whose treatment has failed and are now seeking further treatment.  I believe that removing anyone from the dialogue is harmful.  Not because it removes opinions, but because it removes information.  Opinions are merely that, opinions.  information cannot be gleaned in a vacuum and the removal of data points reduces the possiblity of obtaining real knowledge.  

      In light of that, I would like to make a proposal, that being that we systematically attempt to put together what we know and what remains unknown, and try to find agreement on that.

      Following are what I see as knowns:

      We are a group of men who are identified as having either indicators of cancer or cancer verified by biopsy.

      We have yet to agree on what indicators would/should trigger the need for cancer verification via biopsy.

      Once we have cancer verification, we have yet to agree on what cancer markers and patient parameters would/should trigger the need for cancer treatment.

      We have yet to agree on what treatments are likely to produce the most benefit and least cost.

    • Posted

      Hi Carl,  ( or should I now call you  ' Che of the Urals ' ? ),

      But,  what you now advocate is the THIRD set of biopsies you have undergone in twenty years ... And you do not report any adverse effects from the first two 'Stone Age ' procedures that you went through and most of us even now,  still go through.

      Thats the point isn't it ? ... And that all along,  you have known what you have / have not been dealing with ?  

      David does not.  

      You knew you could rationalise your rising PSA against no detectable biopsy evidence of PCa.  David does not.  His MRI has confirmed he has PCa in the apex of the gland ( the most common site ).  But without biopsy he neither knows how aggressive it is,  nor have a bench - mark.

      You talk about kindred spirits and common language,  but in reality you have neither.  The you of fifteen to twenty years ago was a completely different animal to what we see now and you know it.  Your sagacity has been brewed only by trial x3 and error over 20 years;  and is NOT transferable. 

      And now your confidence is waning or you wouldn't be on this Forum at all.

      Obviously Carl the above has been saiid with all due affection and respect.  But from down here in the real world however,  the heady hot air balloon of denial appears to have risen to unsustainable and unprovable heights.

      Regards

      Dudley

    • Posted

      Well Old Friend,  our posts have crossed.  Mine would read more relevantly after yours to David rather than where it now sits.

      But no matter.  

      What you propose has been well thought through.  But I don't know how your  ' conceivable ' could possibly proceed to a birth and life.

      And of course what I perceive as being the most glaring omission in all our posts would still persist.  Which is,  that there is no dual parenting, I. e. No  input from the  Medical Profession.

    • Posted

      In actuality, Dudley, I have no problem with the idea of David having a biopsy.  I think he perceives the risk of biopsy as greater than I do.  I would probably have one if I were in his exact position.  It is one more piece of information.  I would not have a blind biopsy as I think it is almost all risk and zero benefit.  But if a guided biopsy was available I probably would indulge, even considering the issues he raises and the one he didn't "needle tracking."  I do doubt that biopsy will be a deciding factor, although it could be if the results are 4 + 4 or higher and the specimen is haploid. But even with that information I would want to know more about doubling time, David's additional health issues, and his projected life expectancy.

      As for me, I do wrestle with uncertainties, many of them.  It is absolutely true that I know more now than I did twenty years ago.  To date it also remains true that I would have done what I did then.  Obviously, the final story on my N of 1 won't be told until I either die from prostate cancer or something else.

      To your assumption about who I am, I do believe that I am one of the few who isn't looking for support for the decisions I have made.  I made them in as informed a way as I could, along with consultations with "experts."

      I am, however, looking for a forum where men who are considering going to war can converse with those who are at war, and those who have returned with frank honesty (benefits and liabilities) about the path every step of the way.  And that is why I would like for all men to remain on the forum, not just those who have jumped in the water or just those who remain on the deck.  I do have a wish, however, that we could all put down our shields, recognize that whatever place on the path we occupy and whatever choices we have made, we all, as men and simply as humans, remain vulnerable.

      There are two kinds of men, Dudley.  There are those who are vulnerable and admit it and those who are vulnerable and don't admit it.  

      I've admitted my ignorance to you......it's your turn.

      And, again, My Best To You,  Carl 

    • Posted

      I thought both my ignorance and vulnerability were transparent ! ?

      And I haven't made any assumption about you Carl, other than that you sound like a good bloke.  

      It is indeed a pity this can't be conversational over a good brandy and a cigar.

      What concerns me is that newly provisionally diagnosed Patients must peruse this site daily.  If even one of them,  by reason of the non -invasive argument hereon,   is dissuaded against Medical advice from having a biopsy and yet has an aggressive  but still contained PCa ;  then a very real harm may have been done.

      And he may have dependants/ or a young Family,  as was the case with Alfie4 a while back.

      That's all.  I've no axe to grind at all and I don't want to be personally ' right '.  I just don't want us collectively,  to be wrong and inadvertently do harm.  That's why I say ... Let's finish it.  I'd be very pleased for both you and David to come back and have the last word ; if only it could be.

      And moreover,  this site  provides for private conversations between Forum Members.

    • Posted

      Thank you for those words. This is my second attempt at a response - my iPad seems to have deleted the first. As you ask, I am an accountant and I live in SE England.

      I am fascinated by your story. You must have a strong will to have resisted the pressure to have invasive treatment, especially prior to recent studies showing treatment v outcomes. I am also curious as to why you continue to have PSA tests as you do not appear to have an intervention-threshold. So many people seem to relate PSA directly to cancer. The clue is in the acronym - PROSTATE specific antigen, not cancer specific. I have read Dr Ablin, who devised the PSA test and is fervently against its use in cancer detection. He feels it has been hijacked by big pharma and is now part of a multi-billion dollar industry.

      I did not mention needle-tracking in my list of biopsy negatives but I find it impossible to believe that needle-tracking does not occur, if not outside the PROSTATE then within it. How could this not happen?

      To answer another question, I used the term 'life saved' because this is the criterion used in most studies. The study I referred to (which is the largest yet undertaken) looked at 10 year outcomes. I am also wary of the term 'cured' as this is dependant upon the definition used - which has changed markedly over time.

      Once again I thank you for your response and I will consider a Colorado Doppler biopsy. Please put your details on your profile.

      Regards. David

    • Posted

      Obviously that should read Color Doppler - damned ipad predictive text. One other question Carl, did you change your diet?

      PS Thanks for the earlier link Dudley re Hindawi Publishing Corporation : Clinical Study,  Analysis of Preoperative Detection For Apex Prostate Cancer By Transrectal Biopsy. Once we are thrown into this PCa business there is an ocean of available material online - the trick is assessing what is valid and what isn't and trying to assess one's own situation.

      Thanks again to all.

    • Posted

      Yes David,  it seems that there are many floating objects out there to cling onto but perhaps,  very few actual life-belts.
    • Posted

      Hello David and Dudley,

      I have been away from the forum contemplating the interactions that I have had with Dudley.  He hails from a country where apparently it is difficult to get health care and where if you make a choice that disagrees with your practitioner then you are placed at the rear of the line.  I hail from a country where if you have the money you can do whatever you want and buy your way back in.  Although from my perspective it is difficult to believe, it is conceivable that his country undertreats prostate cancer.  It is widely known and accepted as fact that my country rabidly overtreats. 

      It is my belief that both Dudley and I would wish to spare men harm.  Personally, I hedge on the side of being very careful about initiating treatment because it almost always harms and in very significant ways ( in my opinion a horrendous cost).  I believe, although I may be wrong, that he hedges on the side of intervention, wishing to put off death more than he is willing to risk the probable harm to quality of life. 

      With that said, yes I am familiar with Dr. Albin's position on PSA screening.  He holds the same position as the U.S. Preventative Services Task Force Recommendations on Prostate Cancer (a document you should read in its entirety if you haven't already).  That document continues with the position that screening with PSA should not take place because of the overtreatment that inevitably follows in this country (I personally believe that it is malpractice for a physician to provide radical treatments that inevitably bring about harm solely on the basis of of the patient being frightened and wanting intervention). 

      And to answer your question, I get a PSA tested once a year because it gives me one more data point on doubling time.  What I am looking for is whether my logarithmic doubling time is changing.  I also do the occasional scan to see if the cancer has migrated.  So far, so good......but we'll see. 

      I would not recommend my path to anyone.  But then, given what I've seen of the damage done by radical intervention, I wouldn't recommend that path either......unless the cancer has been shown to be very aggressive, not low risk or even intermediate risk:  4 + 4 or higher Gleason, haploid, doubling time less than two years, a predicted lengthy lifespan, etc.

      You are an accountant, David, work the numbers on doubling time.  It is like compound interest.  Find me an investment with a six month doubling time or less and I'll invest.  Compare that to what you would get in a four or five year doubling time.  That is why I consider doubling time to be a valid and very important measure of aggressiveness.

      Also, it is my understanding from the research that I have done that cancer wants to live at least as bad as you do and it can alter its genetic composition quicker in order to continue to live.  For that reason, anything that you do that provokes the cancer without outright sterilizing the body of all cancer cells......isn't enough and will very likely provoke a more aggressive cancer to emerge.  That is why when you stop androgen deprivation therapy you then have androgen independent cancer......generally a far more aggessive and deadly version.

      So, to another of your questions, I don't know that I would say that I have such a strong will, but rather I see conceptual and factual flaws in the available options......including mine.  But one thing is guaranteed for me......to date, and I'm a good twenty years into this choice, I don't have to suffer any of the harm brought about by intervention.

      I do wish you the best with your choices and, I trust, so does Dudley.  He characterized me as a good "bloke" (although I suspect he believes I am misguided) and I suspect that he is the same (a good "bloke").

      Carl

    • Posted

      "unless the cancer has been shown to be very aggressive, not low risk or even intermediate risk:  4 + 4 or higher Gleason, haploid, doubling time less than two years, a predicted lengthy lifespan, etc."

      There is only one way you will ever konw these results is by having a biopsy...

      I love reading all the opinions put forward here... :-)

      Time is, and has always been, of the essence of living...

      "I'm sorry but from my perspective I will always continue to disagree with anyone that doesn't have themselves checked out for Prostate Cancer."

      I can kind of understand (I think) the age additions to most participants and in doing so ask that the age relevance be kept foremost in your conversations... If I were 70 'I'd be bloody thankful!' but unfortunately I am still some 17 years away from that benchmark...

      I have and hope that I never try to convince anyone about the importance of trying to keep in front of this lethal enemy...

       

       

    • Posted

      Hi Carl and David,

      Firstly let me please assure you that I wish nothing but the very best outcomes for each of you ;  whichever investigative procedures you may individually choose and subsequently decide to act upon,  or not.

      Secondly I am a little humbled Carl,  that you have crafted such a detailed response and couched your observations in an highly sensitive and courteous way  ( even though you knee me a bit in para 2 ! ).  But that's fair enough I suppose.  As David is also experiencing,  the touch screen on an ipad can develop over-sensitivity when in email mode.  And there is no 'save' option. So what can happen is,  that you compose a really thoughtful discreet reply ... get 95% through it and ...  Bam !  it disappears.   So you think 'Sod it '  and then just get somewhat comparatively artless observations bashed out ... and sent before anything else goes wrong.   Admittedly the style becomes a bit brusque,  but no disrespect is intended,  nor are any observations made in order to hurt or belittle.

      Actually  your last sentence of para 2 made me smile,   because most people think that as I went out and bought a K6 GSX-R 1000 three weeks into my 9 weeks of daily EBRT,  that I had a Death Wish !

      As to the debate we are probably never going to agree. It is beginning to go over my head somewhat anyway.  You do seem streets ahead of us over there.  I've been seeing Consultants for 12 months and no-one has even mentioned haploid or diploid. I live in an Australian Country Town of 14,000 people,  85 klms from a City with 1.5m.  Our local Hospital,  doesn't even have one Doctor working there.  They get called in.  But hey ... We get a lot of sunshine !

      Once again wishing you both the very best possible outcomes,  under the circumstances.

      With Kind Regards

      Dudley 

       

    • Posted

      Matey,  Mate,  Mate ... M-A-A-A-TE ! ,

      I feel for you Brother.  You really have been thrown a dirty curve !   Hopefully they can keep you ticking over with a reasonable quality of life until they find better suppressants,  or even that elusive cure.  

      Certainly no Septugenarian + should even think about complaining.

      So far,  accepting my fate at age 71 has not been too difficult for me,  because I have certainly dodged a few bullets in my time.   Also,  my elder Brother died of a rare brain cancer when he was twenty yrs and ten months.  My Father died of Cancer of the lung.paged 61.  

      When God wants me to succumb, then that's when I'll go. I don't think about trying to stay alive and I don't think about dying.   I haven't changed my diet ( I believe its heathy anyway ).

      When my time comes, Jesus has promised,  he will come to meet me and receive me unto Himself.  And that's more than good enough for me.  I am endeavouring to die a happy man who is at peace with the World and looking forward to being re-united with Pete,  Mum and Dad.

      Very Best Wishes and Kind Regards Kombi.  Hang in there Mate,

      Dudley

    • Posted

      Hi all.  Have found our point of agreement. 

      You have? Says all of you in amazed chorus.

      Yes Says I all smug and self satisfied.

      Go on then You say,Tell us, spit it out.

      it's not a good idea to get Prostate Cancer.

    • Posted

      now to be serious again. I was shaken to read that prostate cancer kills more than twice as many than Breast Cancer every year! The article gave late diagnosis as the principal cause. I had late diagnosis. Not surprisingly I am pro screening with education from youth to improve rational response to rising PSA.

      see TheTruthAboutCancer , article Cancer Has Many Faces, sections 5 and 8 (Breast and Prostate Cancer) brief, to the point and not pretty. 

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