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The path I'm taking

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david41094
david41094

Having agonised about what to do for over a year now I have finally decided. Nothing. Well, not quite nothing but what is termed ‘watchful waiting’. My PSA has steadily increased over the past two years from 5.4 to 7.4 and in September my GP referred me to a urologist. The urologist, who arrived very late to the surgery, did a quick DRE then said that he would refer me for a biopsy. I wanted to discuss the options, including MRI as I didn’t want to undergo an invasive procedure without proper discussion. Also, I had read that in a test conducted on 223 biopsy-naïve men that biopsy was no better at detecting PCa than MRI. The link to the study is here http://www.europeanurology.com/article/S0302-2838(14)00211-5/fulltext/prospective-study-of-diagnostic-accuracy-comparing-prostate-cancer-detection-by-transrectal-ultrasound-guided-biopsy-versus-magnetic-resonance-mr-imaging-with-subsequent-mr-guided-biopsy-in-men-without-previous-prostate-biopsies and the conclusion reproduced below.

We found that mpMRI/MRGB reduces the detection of low-risk PCa and reduces the number of men requiring biopsy while improving the overall rate of detection of intermediate/high-risk PCa.

Unsure how to proceed I asked my GP to refer me to a private urologist with the hope of being able to discuss the alternatives.

In the meantime I did some extensive research and discovered two further studies which concluded that for low grade PCa (PSA<10) the outcome for watchful waiting was no worse in terms of morbidity that invasive treatment and the outcome in terms of quality of life was much better. both studies were conducted over at least 10 years by reputable agencies. one, conducted by the new england journal of medicine is here http://www.nejm.org/doi/full/10.1056/nejmoa1113162 . the other can be found by searching 'pivot'. also, a number of well-known doctors have published articles in favour of doing nothing – dr mark porter in the times and dr sarah jarvis in this very website, not to mention other articles in the daily mail, telegraph and independent. i got to thinking that if invasive treatments did not improve my outcome, what was the point of a biopsy?

i finally got to see a private urologist who discussed the options and, although he was marginally in favour of a biopsy, did not object to my proposal. so now i am going to monitor my psa and i will reassess the situation if/when my psa goes into double digits. i have since gone on a no-dairy and low red meat diet and my latest psa (dec14) was down marginally to 7.2 – still high but moving in the right direction. i appreciate that this course of (in)action is not for everyone and not knowing is frustrating at times, but for me at least, i feel it is the best current option.

i am 56 years of age and my father, who is still very well had an rp for pca about 15 years ago. all dres have reported ‘enlarged but benign-feeling’. the="" outcome="" for="" watchful="" waiting="" was="" no="" worse="" in="" terms="" of="" morbidity="" that="" invasive="" treatment="" and="" the="" outcome="" in="" terms="" of="" quality="" of="" life="" was="" much="" better.="" both="" studies="" were="" conducted="" over="" at="" least="" 10="" years="" by="" reputable="" agencies.="" one,="" conducted="" by="" the="" new="" england="" journal="" of="" medicine="" is="" here="" [url=http://www.nejm.org/doi/full/10.1056/nejmoa1113162=""]http://www.nejm.org/doi/full/10.1056/nejmoa1113162=""[/url]; .="" the="" other="" can="" be="" found="" by="" searching="" 'pivot'.="" also,="" a="" number="" of="" well-known="" doctors="" have="" published="" articles="" in="" favour="" of="" doing="" nothing="" –="" dr="" mark="" porter="" in="" the="" times="" and="" dr="" sarah="" jarvis="" in="" this="" very="" website,="" not="" to="" mention="" other="" articles="" in="" the="" daily="" mail,="" telegraph="" and="" independent.="" i="" got="" to="" thinking="" that="" if="" invasive="" treatments="" did="" not="" improve="" my="" outcome,="" what="" was="" the="" point="" of="" a="" biopsy?="" i="" finally="" got="" to="" see="" a="" private="" urologist="" who="" discussed="" the="" options="" and,="" although="" he="" was="" marginally="" in="" favour="" of="" a="" biopsy,="" did="" not="" object="" to="" my="" proposal.="" so="" now="" i="" am="" going="" to="" monitor="" my="" psa="" and="" i="" will="" reassess="" the="" situation="" if/when="" my="" psa="" goes="" into="" double="" digits.="" i="" have="" since="" gone="" on="" a="" no-dairy="" and="" low="" red="" meat="" diet="" and="" my="" latest="" psa="" (dec14)="" was="" down="" marginally="" to="" 7.2="" –="" still="" high="" but="" moving="" in="" the="" right="" direction.="" i="" appreciate="" that="" this="" course="" of="" (in)action="" is="" not="" for="" everyone="" and="" not="" knowing="" is="" frustrating="" at="" times,="" but="" for="" me="" at="" least,="" i="" feel="" it="" is="" the="" best="" current="" option.="" i="" am="" 56="" years="" of="" age="" and="" my="" father,="" who="" is="" still="" very="" well="" had="" an="" rp="" for="" pca="" about="" 15="" years="" ago.="" all="" dres="" have="" reported="" ‘enlarged="" but="">http://www.nejm.org/doi/full/10.1056/nejmoa1113162 . the other can be found by searching 'pivot'. also, a number of well-known doctors have published articles in favour of doing nothing – dr mark porter in the times and dr sarah jarvis in this very website, not to mention other articles in the daily mail, telegraph and independent. i got to thinking that if invasive treatments did not improve my outcome, what was the point of a biopsy?

i finally got to see a private urologist who discussed the options and, although he was marginally in favour of a biopsy, did not object to my proposal. so now i am going to monitor my psa and i will reassess the situation if/when my psa goes into double digits. i have since gone on a no-dairy and low red meat diet and my latest psa (dec14) was down marginally to 7.2 – still high but moving in the right direction. i appreciate that this course of (in)action is not for everyone and not knowing is frustrating at times, but for me at least, i feel it is the best current option.

i am 56 years of age and my father, who is still very well had an rp for pca about 15 years ago. all dres have reported ‘enlarged but benign-feeling’.>

2 likes, 162 replies

162 Replies

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  • robert_999
    robert_999 david41094

    Posted

    Just seen your music to your ears post David and here a link which could also sounds good:

    http://www.abc.net.au/news/2014-08-05/mri-could-be-game-changer-prostate-cancer-test/5650280

    • georgeGG
      georgeGG robert_999

      Posted

      Oh WOW! I have just used that link and read the docuent. That would seem to vidicate the pro MRI scan before deciding whether or not to have  a biopsy lobby. Really great if that became standard. Certainly arms new comers to press for an MRI scan first. It might also help men take the PSA blood test if they knew the next test would just mean lying still for 20 or so minutes instead of being punctured many times in an embarasing place.
    • Dudley71081
      Dudley71081 georgeGG

      Posted

      Yes,  I agree.  I was led to believe by my Urologist though that it is a special MRI which was not even available in the Australian State where I live. Nearest was in Melbourne 900 klms away.  How well this practice is available in the U K, I have no idea.

      As much as one would hope that both David and Robert  have got it right,  both have PSA's with high velocity and moreover,   David has a palpable nodule.  To me,  and I don't want to personalize any issue arising out of this both present with enough clinical information and symptom history to indicate that they do have Prostate Cancer and in denying themselves definitive proof they are delaying themselves treatment which may save their lives.

      Regards

      Dudley

    • Dudley71081
      Dudley71081

      Posted

      Sorry,  please forgive me guys.  It is Robert who has the nodule.
    • david41094
      david41094 robert_999

      Posted

      Thanks for the post. I had always believed that a biopsy through the wall of the rectum was not the correct intial procedure - prostate cancer can kill usually after many years but MRSA and other bugs can kill you a lot quicker. Ever so slightly off topic, but I have just been looking at a book called the Great Prostate Hoax by Richard Ablin. Who is he you may ask? He was the man who discovered the PSA test in 1970 and claims it was was never intended to be a cancer marker but was hijacked by Big Pharma in 1994 and has been the basis for millions of biopsies ever since. He is now campaigning against its use in routine screening. I am having an MRi in the new year (nhs is very slow on these matters) and will decide on a biopsy only after seeing the results. Thanks again for the post.
    • Soloco
      Soloco georgeGG

      Posted

      I am due biopsies/MRI in May 2015 and wish I could avoid the biop side. 

      If the MRI could be done first and showed nothing major. BUT a later MRI showed 'something', has it already grown outside the prostate and potentially mastasized???

    • georgeGG
      georgeGG Soloco

      Posted

      I would have expected you to be told if a tumour was seen on the MRI scan to have breached the prostate capsul. That was so or almost in my case. My MRI scan showed two tumours. One contained inside the prostate and the other had possibly breached the capsul.

      The interpretations of the scans at my hospital are done by experts rather than by the consultant.

    • Kombi_Cruiser
      Kombi_Cruiser Soloco

      Posted

      From memory the reasoning I had an MRI was to see if there were any signs of cancer in general... The Trus biopsy was to confirm the extent and grade of the cancer... The MRI procedure was pretty straight forward, drink this, lay there and OK you're right to go after about 45 minutes in total... The biopsy was a simple procedure done under Local Anesthetic and drove home afterwards without any discomfort at all... The MRI revealed nothing yet the biopsy told a very different story...

      Why guess when you can know... When you know your choices become much clearer...

  • robert_999
    robert_999 david41094

    Posted

    Hi David:

    A good chance everything will be just fine for you.

    In many cases a high PSA reading does not mean PC.

    For my situation the statistics are in my favour as is the scan result: my symptoms are explained, and my doctor has given an unequivocal recommendation.

    At this time I am very comfortable with my decision which is based on sound empirical reasoning and professional advice.

    In any event for the above and a variety of other reasons and with immediate effect I now end my involvement with this forum. I will deregulate and delete. I can no longer be contacted and i shall remove this site etc from my computer.

    Best wishes,

    Robert.

     

    • Dudley71081
      Dudley71081 robert_999

      Posted

      Hello again Robert,  My guess is you that you won't delete etc until you know what affect your last post has had.  Well,  I'm sorry to tell you :  none.  I laughed quite a bit actually,  so thanks.

      i was reminded of Basil Fawlty  " Don't mention the War " ( I.e. Denial ),  " I did once ... but I think I got away with it ".

      Regards,

      Duncley

       

    • david41094
      david41094 Dudley71081

      Posted

      As I started this whole thing I think I have some sort of right to have the final say. Firstly, I am immensely grateful for all those who have advised and commented. I guess any post on a forum is a disguised request for advice and a desire to have our decisions validated. That is why people sometimes overreact to advice which conflicts with their own decision. This is a very well known phenomenon and goes by the name of cognitive dissonance. What we have in this thread is two distinct camps with very different circumstances. I do believe that Robert and Alfred are 'safe at present' and should avoid invasive treatment. I also thought the same about myself but my PSA is higher than theirs (latest 7.2) and I do have family history, hence my ambivalence. Another factor is age - I am in my mid-fifties so PCa potentially has a good few years to do its thing. The whole science regarding PCa testing is very new and, as such, there are no long-term studies to indicate the best course of action in any given circumstance. The prostate also seems to be in an awkward place for biopsies and is inextricably linked to sexual performance which bring with it a unique raft of worries. Anyway, I think this thread has served its purpose and once again I thank you all for your input.
    • georgeGG
      georgeGG david41094

      Posted

      Thank you David for this excellent discussion. I wish you the very best of outcomes.
  • david41094
    david41094

    Posted

    I know this post is very rusty but I have just come across the study which influenced my decision above. It is a table of 1000 people who are screened and can be found at http://www.cancer.gov/cancertopics/factsheet/detection/PSA Of 1000 people tested, 100-120 have false positives leading to needless biopsies. 110 will be correctly tested positive for PCa and the total lives saved will be.....drum roll.......1. Yes, 1. This is a very highly regarded study (probably the most rigorous of its type). Doubt if anyone will read this but there it is. 
    • georgeGG
      georgeGG david41094

      Posted

      So, if for these ten years five million men accepted screening there would be 5.000 men who be saved from dying of PCa, that would be 500 a year. This would reduce the present toll of death by PCa in UK of 10,000 pa to 9,500pa.

      My take on this is that urgent attention is needed to minimise the appalling side effects as well as improving the accuracy of diagnosis. Screening should be rolled out now.

    • david41094
      david41094 georgeGG

      Posted

      The point is that even by the most conservative estimate (nhs), 27 people would need to be treated to save one life. For many people that is the bottom line. To take your example above, there would be 500 lives saved but there would also be 15,000 people suffering the effects of treatment unnecessarily. I have read hundreds of stories about how 'PSA testing saved my life' but of course this is anecdotal and nobody can ever tell the outcome of the alternative course of action. I agree wholeheartedly with your comment about the appalling side effects - if these could be minimised it would be a no-brainer.

      Merry Xmas! 

    • georgeGG
      georgeGG david41094

      Posted

      Thanks David. I quite take your point. Our arguments meet in the middle. The present means of diagnosis are damaging and inadequte. Improvement is very urgently needed.
    • Dudley71081
      Dudley71081 david41094

      Posted

      Now that this post has lost some of its angst-ridden overtones I was wondering David,  if you would kindly answer a couple of questions;  the answers to which will help define the boundaries of your philosophy :

      1 ) If subsequently you find that you do have an aggressive prostate cancer ( and I sincerely hope that you do not ),  do you think you will still consider you made the right decision ?

      2 ) Do you think,  if you were to know that the force and persuasiveness of your views influenced another person to avoid a recommended biopsy and then subsequently they were found to have an aggressive Prostate Cancer,   that you will feel culpable ?

      Regards

      Dudley

    • david41094
      david41094 Dudley71081

      Posted

      To answer each question in turn:

      1) Yes. Despite extensive research I can find no evidence that invasive treatment would prolong my life by even one year. Contrary to that I know that treatment would adversely affect my quality of life - my father had a prostatectomy and I am well aware of the side effects. The more I look into this disease the more I realise that nothing is simple - from the vagaries of PSA to the hit-and-miss biopsy all the way to the cut/burn/freeze treatment options. Almost every PCa story seems be be based wholly on the Urologist's advice. What other form of cancer does the patient rarely see an Oncologist?

      2) My advice has only ever been put forward as that - advice. If you recall, your first reply to my original post was unequivocal - 'You have got Prostate Cancer.'  Not even a probably or possibly. How do you know that? The majority of patients with PSA<10 do not have detectable pca (although i concede that with my family history the odds aren't good). i think that my views were put forward with much less 'force and persuasiveness' than yours. anyway, the whole artifice of advice is based on a personal opinion and will never be correct in every case. what about the thousands of people who have had radical treatment for pca which would never have caused them any problem? this is a subject to which there is no definitive answer but i believe that the current balance is too much in favour of unnecessary treatment. i would urge you to read 'invasion of the prostate snatchers' which outlines how the psa test has been misused by those with a vested interest (almost all urologists are also surgeons) to overtreat this condition.

      another point you made was on the accuracy of mri tests when you stated that they could not pick up pca if it were less than 2mm. i agree, but how accurate do you think a biopsy is when you are taking 12 microscopic cores from a gland somewhat bigger than a walnut? do you think this is likely to pick up a 1 or 2mm tumour?

      maybe one day i will wish i had chosen a different path but for now this is the one i am taking and i can only offer advice as i see it.

      wishing you a happy new year

        do="" not="" have="" detectable="" pca="" (although="" i="" concede="" that="" with="" my="" family="" history="" the="" odds="" aren't="" good).="" i="" think="" that="" my="" views="" were="" put="" forward="" with="" much="" less="" 'force="" and="" persuasiveness'="" than="" yours. anyway,="" the="" whole="" artifice="" of="" advice="" is="" based="" on="" a="" personal="" opinion="" and="" will="" never="" be="" correct="" in="" every="" case.="" what="" about="" the="" thousands="" of="" people="" who="" have="" had="" radical="" treatment="" for="" pca="" which="" would="" never="" have="" caused="" them="" any="" problem?="" this="" is="" a="" subject="" to="" which="" there="" is="" no="" definitive="" answer="" but="" i="" believe="" that="" the="" current="" balance="" is="" too="" much="" in="" favour="" of="" unnecessary="" treatment.="" i="" would="" urge="" you="" to="" read="" 'invasion="" of="" the="" prostate="" snatchers'="" which="" outlines="" how="" the="" psa="" test="" has="" been="" misused="" by="" those="" with="" a="" vested="" interest="" (almost="" all="" urologists="" are="" also="" surgeons)="" to="" overtreat="" this="" condition.="" another="" point="" you="" made="" was="" on="" the="" accuracy="" of="" mri="" tests="" when="" you="" stated="" that="" they="" could="" not="" pick="" up="" pca="" if="" it="" were="" less="" than="" 2mm.="" i="" agree,="" but="" how="" accurate="" do="" you="" think="" a="" biopsy="" is="" when="" you="" are="" taking="" 12="" microscopic="" cores="" from="" a="" gland="" somewhat="" bigger="" than="" a="" walnut?="" do="" you="" think="" this="" is="" likely="" to="" pick="" up="" a="" 1="" or="" 2mm="" tumour?="" maybe="" one="" day="" i="" will="" wish="" i="" had="" chosen="" a="" different="" path="" but="" for="" now="" this="" is="" the="" one="" i="" am="" taking="" and="" i="" can="" only="" offer="" advice="" as="" i="" see="" it.="" wishing="" you="" a="" happy="" new="" year="">

      another point you made was on the accuracy of mri tests when you stated that they could not pick up pca if it were less than 2mm. i agree, but how accurate do you think a biopsy is when you are taking 12 microscopic cores from a gland somewhat bigger than a walnut? do you think this is likely to pick up a 1 or 2mm tumour?

      maybe one day i will wish i had chosen a different path but for now this is the one i am taking and i can only offer advice as i see it.

      wishing you a happy new year

       >

    • Dudley71081
      Dudley71081 david41094

      Posted

      Dear David,

      Thankyou for expounding reasoning In your fulsome response. Whatever the subsequent developments in your case may be I stand justly criticised, for the wholly uninformed indiscreet observation I made in my earliest post on your topic and for which,  I apologise.

      I have no excuse.   I guess,  I panicked on your behalf.  

      Strangely,  I have found that whereas I have remained  ( as far as I can tell ) emotionally unaffected by my own condition and circumstances [ other than perhaps, periods of fatigue induced inactivity and a transiently attendant depression ].  Nevertheless,  when I read accounts of the seemingly perilous course(s) being taken by other Patients I feel a higher level of concern for them.  Perhaps it's a 'transference' thing.  I don't know.

      But not withstanding, what it is or isn't  ( which is not important anyway );  I should like you to know that I have every sympathy for you and irrespective of anything I might have said previously which cast darker shadows,   wish you the most favourable of  outcomes.

      All the best and a Happy(er) New Year

      Regards 

      Dudley

       

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