The path I'm taking

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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’.>

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  • Posted

    David, a PSA reading of 7,2 is high and what is concerning is that it is increasing at your age. However, this does not mean you have cancer. I know men with PSA readings over 25 that have had 5 or more biospies with no evidence of cancer. Having said that you should take action to verify what is going on in your body. Has anyone told you about a PCA 3 test which is non invasive. It is simply a massage of the prosate with a urine sample. This indicated a positive reading for me. This pushed me over to have a biopsy. Being a chicken I am, I elected to have the biopsy in the the hospital under general anesthetic. This was a cake walk. Wake up, it is over and go home. Most biopsies in our area are now done this way. I was found to have a Gleason 6 cancer and corrective action was recommended. It was fully contained in the prostate. I took three months to research options and decided on proton radiation therapy. It was done in Florida. I met several men from Europe there undergoing treatment. I am very pleased with the results. This method was non evasive with NO after effects to this point. Good Luck in your travels down this confusing road. One word of caution, make sure whatever decision you make is your decision and not someone else's with their self interest involved.  
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    • Posted

      I don't think we have proton therapy here in the uk? We only have Brachy, radio therapy or surgery. I have read about it though, shame we don't have more choices. Also can't have biopsy under anaesthetic, unless we pay privately.
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    • Posted

      Thanks for your very interesting post. My urologist mentioned PCA3 and said that it is not available on NHS and would cost around £500 (seems a lot for a urine assay!). I guess that is not much to pay for your health though. I am going to request an MRI which is also non-invasive and which has been shown to be at least as effective as a biopsy in detecting cancer (search MRI vs biopsy). I am encouraged to hear about your experience with proton radiation and will certainly consider this when/if my time comes. Your final sentence is very true - there are people on both sides of the treat/don't treat argument who clearly only have their own interests at heart. Really pleased to hear you have no side effects. All the best.
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    • Posted

      See Ben Ong's website. He is very much in against invasive treatment of any kind (including biopsies). Instead, he recommends his own remedies. I would say he has his own interests at heart.
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    • Posted

      I guess my motive was to share my experience and subsequent decision in the hope that others would come forward and confirm my choice. It hasn't worked out quite that way but I have definitely generated a great deal of comment, which can only be a good thing. This is an immensely difficult subject with no absolutes - as the YANA website says 'the golden rule is that there are no golden rules'. Even the PSA test is far from accurate and this is usually the starting point. As far as I can tell, the pendulum seems to be swinging away from invasive treatment, especially in the US where there has been a history of overtreatment, in particular amoung those who could afford the treatment. 

      I don't deny that fear may well be a part of my decision-making process but a biopsy is far from painless and carries a real risk of infection - see Alfred5 above for just one example.

      I have carefully read all posts on this thread and am truly grateful for all opinions. As I have stated, I do intend to carefully monitor my PSA and I will decide on a course of action should it go much higher so I am not ignoring the problem. I hope this answers your question.

      Regards

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    • Posted

      I have just read this article in Science magazine. http://www.science20.com/the_conversation/4_reasons_not_to_have_a_prostate_cancer_blood_test-150637 It unequivocally comes down in favour of not testing at all! The link to infections in section 4 quotes from the American Journal of Urology 'Transrectal ultrasound guided biopsy is the gold standard for detecting prostate cancer but international reports suggest that increasing risks are associated with the procedure. We estimated incidence and risk factors for infection after prostate biopsy as well as 90-day mortality using a nationwide Swedish sample.  I think I am right to at least have severe reservations!

      Regards

       

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    • Posted

      Thankyou for that explanation David.  It is good of you.

      Yes,  I could see you were not getting any affirmations but were still ploughing on regardless in what seemed  ( and please forgive me for this ) a somewhat self-justified way;   [even telling others they were 'wrong' and sending them off to do more research].  And so not unnaturally,  I was beginning to wonder.

      Our hearts go out to Alfred 5 don't they ?   What a difficult position they are in,  with a working Farm and a young Family.  For a great many of us,  the initial decision making process IS the hardest part,  of having Prostate Cancer.

      No matter what decision we make,  whether to treat and in what manner,  or to not treat,  our lives and those of our Family members are changed irreversibly by the diagnosis.  

      The human spirit though is a remarkable thing and whereas initially Fatalism might put in an appearance,  it is in the majority of cases quickly dispelled by Hope. 

      Given their relatively small percentage of incidence,  the absolute lottery of investigative procedure side-effects reflects I now believe not so much a valid medical reason for procrastination,  but rather the underlying

      unpreparedness of ourselves for adversity in our lives.  

      This was certainly so in my case.  I felt I had too many things ( travel ambitions, lover, secular life-style etc ) to lose, by just one missed-step.  I felt I was looking at invalidism (I'm not ).   So I slammed the door on it and turned away.

      Also,  we ask of ourselves the inevitable question :  ' why me ? ',  ' I've always tried to live healthily ! '.   But ... that is life.  So,  ' why not you ? '

      Denial was my way of dealing with it all and I let 5yrs drift by.

      And now my situation is undoubtedly worse because of that.  And no,  I haven't  lost those things that I value.  Nor apparently, would I have.

      I don't know if this will influence you,  but here's something I was told by my Medical Team that you don't seem to see mentioned anywhere :  In having Prostate Cancer,  your general health is impaired.  There will be a lower threshold for fatigue.  This is because your body  ( as with anything else invasive ) is trying unaided,  to fight the disease itself.

      I wish you good luck as you walk down your chosen path David .

      Regards

      Dudley

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    • Posted

      Hi David,

      I have followed the arguements with interest and sympathy. It does seem that once Prostate Cancer is in the frame every row before us is a hard row to hoe. And that includes the row of doing nothing. The comfortable row we had been hoeing no longer exists; it must now be identified as doing nothing. It is the shortest row, almost certainly, and will probably include the worst features. Active surveillance is not doing nothing but does carry the risk of the disease getting ahead making a cure most unlikely. This initial decision is so difficult and the stakes so high. 

      I am not a gambling man but I was acutely aware that when I made my initial decision I was taking a huge gamble. It was quite outside my normal behaviour. Once made, subsequent decisions are much less fraught. I hope you have gathered the information you need to make your choice and it turns out to lead to a good outcome for you.

       

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    • Posted

      Thank you Dudley and George for your insightful words.

      I originally thought that I could make a decision to monitor the situation and carry on with life as normal. It appears that this isn't the case - I seem to spend every waking hour either searching the internet or thinking about it. Maybe I am in denial but I fear treatment - as George says, the prostate is the sexual powerhouse - and I also fear a biopsy - just look what happened to Alfred and I fear that side effects from biopsies are greatly underreported. Against that I argue that my Father had an RP about 12 years ago and is still alive and well into his mid-eighties. I am now going to carefully re-read the posts and to reassess the situation. I thank you all for your advice.

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    • Posted

      Hello George 

      I felt I should explain ( to you at least ) my ' secular lifestyle' remark. 

      All I meant was:

      Whereas I have never known life as a non- believer,  I have for long periods of time not attended Church on Sundays.  This is because of dissatisfaction with the shall we say ' management ' over diluting the Gospel.  I go instead to Chapel and Morning Prayer.

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    • Posted

      Hello Dudley,

      You have never given me a moments unease. I am alwys mindful of the context in which we write our posts and also the higher and wider context in which our reality is found.

      Unlike you, I was for over 30 years an unbelieving church goer. Now some 40 years later I have grave concerns with all the forms of church I have experienced. To me 'ekklesia' means something rather different from 'church'. I understand it to meam 'called out'  and that in Bible context to mean ' a gathering of those called out from the world to the Lord Jesus Christ'. I do not think you will have any difficulty in understanding me. The implication is that I do not consider attendance at meetings in church, chappel, hall, or home is essential. Gathering with people of like mind is essntial but difficult to achieve. 

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    • Posted

      Yes studies are very valuable, but not always to patients. This may or may not be useful to you. I always lookout for two sorts of thing.

      (1) who is paying? if a special interest body or charity is paying, then who are the major subscribers.

      (2( watch out for 'weasle' words. Here there are 'rising risks' Does the writer mean that over a substantial interval measurable risks are showing a rising trend and if so what is the slope and what prcicely is at risk and why should there be a trend in risk perception. Alternatively is this just tossed into the report to add a semblance of weight in support of a biased or unsupported conclusion or even to destroy confidence in an unwelcome conclusion. 

      That said, let us hope that this will prove to be a well found report and that its conclusions will be useful to you.

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    • Posted

      I am all for having a biopsy, but my husband would never have another, he had an MRI a week after which showed prostatitis (most likely caused by biopsy) he had 8 weeks of antibiotics and he has a constant pain which he says is in and behind his left testicle. It wasn't there before the biopsy. He says it is only a dull ache but doesn't go away.
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