The path I'm taking
Posted , 11 users are following.
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="">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’.>
2 likes, 162 replies
gale10132 david41094
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alfred5 gale10132
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david41094 gale10132
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Dudley71081 david41094
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Dudley71081
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david41094 Dudley71081
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Dudley71081 david41094
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And how about yourself ? I have re-read your initial post and once again wonder what the purpose of it was ? Can you tell us your motives please ?
Regards,
Dudley
david41094 Dudley71081
Posted
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
david41094
Posted
Regards
Dudley71081 david41094
Posted
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
georgeGG Dudley71081
Posted
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.
Dudley71081 georgeGG
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david41094 Dudley71081
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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.
Dudley71081 georgeGG
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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.
georgeGG Dudley71081
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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.
georgeGG david41094
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(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.
alfred5 david41094
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Dudley71081 david41094
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