Make your mind up time

I'm very sorry to learn that your Hubby is still having some side -effects problems.   Hopefully these will,  despite the current   pessimism,  lessen as time progresses.

You both were and are,  very brave.

Dudley

I am am sorry to hear that.  How are you bearing up ?  It is as they say,  a bummer !

Unless I missed iI,  I don't know your age nor the elapsed time between your two biopsies which factors you will no doubts consider carefully in planning the way forward ;  as indeed your Medical Team will have done in making their recommendations to you,   detail of which I am again similarly unaware.

But I fully appreciate that I do not need to know.  Because all that it is appropriate for me to do,  is support you in whatever decision you enact,  once made.  

I have erred on this site previously by conveying heightened concern over Patients'  both ignoring and/or encouraging others to ignore,   Professional Medical Advice.

Perhaps the hardest part in the whole aetiology of PCa is the realisation that irrespective of Medical Advice and counter-arguments,   the decision on which way to go forwards is ultimately our own ;  and that once taken,  we will scarcely ever know,  if that decision was optimal.  

At the point which you are now at and that  most of us contributing hereon have likewise been through,  it is the fear of the unknown either way,  which needs to be marshalled.  

Deep breathing and a firm resolve to get through it all whatever the outcome with as much stoicism as I can muster,  dignity and a willingness to both take any opportunity for humour that comes along  ( mainly ironic ) and be of service to others,  is what I chose when ultimately both my symptoms and readings became unignorable and at which point,  I followed Medical Advice. 

More important though is that I have been buoyed and sustained  by being of the Christian Faith.   And as such I have never been alone or without a Comforter in the way that unfortunately,  those without belief are.

 ( And,   I don't live next door to a member of ISIS,  so that's got to be good hasn't it !!? )

Whatsoever you choose to do or not do,  I wish you all good fortune.  My only worthwhile advice to you would be to trust in God and pray for support and guidance.  I believe you cannot do better than that.

With Kind Regards,

Dudley

( Age 71. 8;   PSA 10;   Gleason 3 + 4;   T2b;   Mini-TURP and BNI;   42 x IMRT;   Post Rad  iatrogenic benign lesion excised;    urethral stricture, ;   incontinence ). 

I must admit that I took a break from the forum because I find it so tragic.  And, for what it is worth, I find both sides of the problem tragic......missing an aggressive cancer is, of course, tragic and the scores of people irretrievably and unnecessarily harmed to prolong one life I personally also find tragic.  The latter is why the US Task Force recommended not testing and not knowing.....hard to believe!

You asked about why I've had three biopsies.  Back in my days of relatively greater ignorance I simply followed my primary care doctor's recommendation that I visit a urologist about my elevated PSA.  I was 50 and my PSA was nearly 10.  The urologist recommended a biopsy "to see if there is cancer."  Because the biopsy was blind, they didn't find the needle in the hay stack that I am certain was already there and had probably been growing at least ten years (that was twenty years ago, 30 years ago to the beginning of my cancer).  A few years later I went for a second biopsy, also blind and again they didn't find anything.....it was still there and was still growing.  When my PSA slowly creeped above 20 I started an in depth look at prostate cancer.  I already knew intuitively that I had prostate cancer (the majority of men our age do) and although I believed and knew at the time that it was very slow growing, I became curious about my Gleason score having been led to believe by my research that the Gleason score held some predictive relevance.  This time, in 2005, I had a color doppler guided biopsy series and while I watched the screen the physician hit the red highlighted spots directly eight times!  The result was a Gleason 3 + 4 with a 3 in two samplings and a very small amount of 4 in one of those.  The other six were clear, although each needle hit a highlighted spot! 

Since that time I have learned more about the dangers of biopsies, especially needle tracking and the piercing of the encapsulation of the prostate.  I also learned recently from an analysis of SEER data that only Gleason scores of 8 or 9 hold much predictive validity in terms of shortened life expectancy. 

In ethics discussions there is an age old question......if a streetcar were out of control and you could save five people on board by directing the streetcar over a single person, killing him outright should you do it?  Difficult as this would be, at least abstractly I would support this.  Apparently the US Task Force feels that the prolonging of one life (no one is ever saved, except perhaps in a religious sense) does not offset the significant harm done to so many men.  But that is merely their position. 

My position is that I would like all of us to share honestly the ghosts that haunt the choices each of us make.  For myself, my life is full, I move freely in the world and I am not in any way encumbered (as yet) by the choices I've made (and yes, I understand that this could be very different for me and could turn in the future).  Some worry occasionally pesters me, but not often.  As I've shared previously, I decided to make my cancer my friend and it is my expectation that my cancer will die with me when I die of something else.  We'll see.

But from your side I would also like an honest sharing of the ghosts that haunt your choices and the ghosts of others on the forum who have chosen treatment.  PSA reportedly rises in about 30% of men who've elected prostatectomy within a ten year period post-op.  The data is less available on brachytherapy, radiation, and androgen deprivation, although it is evident that if it does come back it tends to come back with a vengeance.  And I'd like the word "saved" stricken from the dialogue as propaganda and, at best, replaced with the word "prolonged."  Truth in advertising you know.

You are correct in your assumption that I am a doctor and an allied health professional.  In that capacity I have met with and counseled several men who have had treatment for prostate cancer.  The bulk of them report having been scared and without any awareness of what they were doing just asked the doctor to "get it out."  No one counselled them regarding their fear.  Over the course of time I have met people whose lives came apart or they shouldered on as the walking wounded.  All have had problems with erectile dysfunction, many have had ongoing incontinence, one had a punctured rectum.  These are significant side effects.  And most alarming to me, most of these people had very slow growing cancers, were in their mid to late 60s, some had other life threatening chronic illnesses......and yet with the ill advised directive of the patient were operated on, in my opinion unnecessarily. 

So, in America, you can't completely trust your doctor.  That is a significant problem based on the fact that he or she may not have your best interests at heart. 

Finally, I feel like I would be more supportive of your position if you could wrap your mind around mine.  It does not seem like you, my chum, are a person who wouldn't give a damn about the damage that is done for no reason.  I don't want someone to die unnecessarily of prostate cancer.  As a person who has been through the prostate cancer war, is it really only diagnosis and treatment or can you also care for the person who will likely suffer profound emotional, psychological, and physical damage when intervention is not warranted?  And are you willing to throw down a cautionary flag so that people can do their own research? 

Again, I meet you also with respect and wish you the best and a very long and enjoyable life. 

Carl

Thankyou very much for your kind and considered response.  And once again I am humbled by you taking so much care to elucidate your rationale.

Which,  by the way,  I cannot fault.  

So effectively yes,  I have wrapped my mind around your point of view,   although I struggle uncomfortably with its application.

(But firstly let me quickly say that although I don't know whether your Professional duties included a teaching role,  you are nevertheless a natural ! ).

Secondly,  I un-sycophanticly followed your thinking and appreciated your examples.  As regards the runaway bus,  I don't think I would/could do it.   My thinking would be that for us on board,   this is our fate ;  and we have no right to involve anyone else in it.

A broad overview of my current cognisance of these complex medical issues,  is that I genuinely feel I have now strayed into the ' The Older I Get,  The Less I Know ' area.   And accordingly I should and will back out of further debate on this particular issue.  

In conclusion,  what up to now has been motivating me is  :  that this site is regularly visited by people,  mainly men,  in obvious distres ... ( those who innocently went in for an health check,  seemingly the worst affected ) ... who are concerned as to whether they should have this,  or that treatment.  

And then,  all of a sudden,  they are met with : ' Don't have any treatment at all '.  which advice,   flies in the face of all they have been told by those whom they have been encouraged to entrust with their lives.

What the answer is,   I don't know.  I just don't know.   From reading the various posts hereon it seems pretty obvious that not everyone is blessed with the intellects of yourself and David.   Many can't spell,   Most,  including myself,  murder English Grammar.  To set such people onto a lonely path of Medical isolation and possibly alternative medicine quackery and against their Doctor's advice,  with a potentially life-threatening disease,  seems ... Oh, I don't know ... irresponsibly God-like I suppose.   But that is just a personal perception and not a judgement.  

It has just occurred to me that perhaps there is an answer and that ( albeit somewhat Zen-like ),  is :   ' That none of us belong in Another's Life and that their Destiny,  is between themselves and their Maker '.

Yes Carl,  I have my ghosts and I think ironically and without elevating myself,   they are pretty much the same as yours.  I think you intuitively knew that too.  

What I most would like to convey is the love I have for both yourself and David and indeed the whole Community.  Love and Respect.  Sympathy and Admiration too.  I should like to be able to support you on your journey Carl and would be very pleased to have the occasional private conversation with you.  Admin have got my email address.  Please utilise it if I can be of any assistance to you.  I can well imagine how difficult it must be for a  Medical Practitioner to process the aetiology of this disease.   And ' Physician,  heal Thyself '. Is just not on,  is it ?

Best Regards

Dudley

Time for bed I think !