The path I'm taking

Hello Mary,

I don't wish to be thought of as un-courteous  and please forgive me for posting before David,  but I believe in the interest of even-handedness that the massive research you speak of,   does not prove that intervention doesn't change outcomes.  The whole problem with the uncertainties  of Prostate Cancer is that each individual case is entirely unique and statistics by their nature are,  within any set of parameters,  entirely general.

And prudent foresight is only provable,  retrospectively.

My feeling is that neither yourself,  nor David,  nor Robert before him realise just how potentially *harmful it is to have people posting on here,   who either individually or vicariously do not have the courage to either determine whether or not ' they '  do have PC and /or,   have the treatment recommended.  

And who then extol what is in every instance an unprovable and unfounded preference,   as a virtue.

* I say potentially  *harmful,  because none of you are Medically Qualified and in enthusiastically promoting an approach which in each specific case,  is against the recommendations of a qualified Medical

Practitioner,  you are potentially influencing someone,  perhaps with dependants,  who may need early and life-saving intervention which has been recommended to them,  to either defer or cancel treatment.

I therefore wonder why you or David or Robert even,  need to come onto this site ?   You have decided ... Qualified Medical intervention is not for you.  So how are you helping anyone ?   You have collectively set yourselves up as naysayers of qualified medical treatment.  

So what do you hope to achieve ?  Validation of your philosophy with its in-built inability, to effect a cure of anything ?

I do not wish to prolong the debate however,  I simply wonder if any of you can fully appreciate what it is that I am getting at and accordingly would be prepared to please,  as I intend to do,  just kindly fade away into the ether of your own self -justification.

Hi Dudley,

I understand your fear and doubt.  I was simply answering David and aplauding his desire to find out more.  I am shocked that you are so upset by my self justification and what is this forum for????? Your opinion on treatment?? The wait and see, change diet treatment is a treatment option. Viable as well.  This seems so odd that you would be offended but I understand everyone in this form is fighting for his life.  I am sorry to have offended you!!  I have never debated with you and I never intended to.  FYI Dudley, John Hopkins came out and said 90% of protate cancer is attributed to diet.  So I guess you want those stats to fade away too? I know we all have opinions and I know that everyone is searching.  I too am interested in knowing if any men with prostate cancer suffer from prostatitis as well? That is why I went on this forum.   Once again Dudley I mean no harm!!! I also doen't want to debate I just want to hear ideas.  Davids post was asking for opinions and I gave him mine..... NO need to shun me!!!

Also have you ever heard of a test that can analyze a tumors genes and predict which prostate cancers won't need additional treatment and intensive Therapies. that might help David

No, no,  you are not being shunned Mary.  Far from it.  And I'm sorry that I am unable to  agree with your generalizations ( and  '90 % of Prostate Cancer is attributable to diet'  Is yet another ).  But you are not alone in grabbing at these straws that seem to support your points of view.   David for example,   refers to articles from Daily Newspapers.

So,   on the one hand you have fully qualified Medical Practitoners,  making recommendations based on sometimes decades of experience ;  and on the other hand you have unqualified wannabe bullet-dodgers ignoring medical advice and seeking validation of and support for their non pro-active decisions,  which are based on fear and doubt.

Good luck to both you and them.  Obviously,  you are all going to need it.

I just hope that neither individually nor collectively you influence people who may be  wavering about having a biopsy for example,  to not proceed based on say,   David's fears,  of the possibility of the procedure leading to an MRSA.  Because, in my 10 months of visiting this sight regularly ( in gratitude for my survival and in the hope of repaying my debtby being of service to others ),  I have yet to learn of anyone posting thereon, suffering from an MRSA.

And no matter how assured David might now both consider himself and  appear to be,  having in the interim subjected himself to significant cognitive dissonance,  he has periods of far less certainty.  Witness,   his posts when he first came on to the site a few months back. 

One of the principles of the Hippocratic oath is I believe,  something along the lines of :   ' Firstly seek to do no harm '.  

That is all I am alluding to.  And there is nothing personal at all intended.  It has been in many respects an hypothetical debate anyway;  and it is unlikely to yield any results.  So I reckon its good to wish each other well and agree to disagree.

Kind Regards

Dudley

 

Nothing apart from Gleason test scores,   which give the most accurate basis for a prognosis,  that the Med Prof has.

we were able to send out a sample of the original biopsy and they were able to tell us that my husband had a 3% chance of dying from prostate cancer. I wish he were awake so I could ask him the name of the test.  It was sent out by UCI medical hospital a leading doctor in robotic surgery sent it out for us because he was concerned when Tom choose not to have surgery. He was surprised by the findings. This is a new test. I will try to find the name.  Not a holistic test and it was hard for us to get a copy of our original biopsy tissue.  but we did.  the test helped us to relax a bit.

Dr Thomas Aldering,  he is pretty well known

Whoaaa. We are all looking for advice, plain and simple. This is a very unusual disease in that a non-specific test (PSA) has been hijacked by unscrupulous urologists to provide a great deal of unnecessary treatment - especially in the US. Yes, I mention newspaper articles but they quote respectable sources - one of which, Dr Sarah Jarvis, can be found on this very website. Please look at cancer.org which diagramatically illustrates how many people are treated to save one life. I have yet to see a study which proves the efficacy of any form of treatment. Another aspect of this awful disease is that the prostate is unfortunately situated at a busy junction which involves urination, defecation and sexual function. Most treatments seem to have an adverse effect on all of these to a greater or lesser extent.

That said, it is the second biggest cancer killer so definitely something which cannot be ignored.

Although I have argued the case for non-intervention I am actually ambivalent, hence my original post. I do not subscribe to Dudley's questioning of the right of anyone to post if they do not strictly follow medical advice on the grounds that we are not medical practitioners. If only medical practitioners posted here it would be a very quiet thread indeed. Also, active surveillance and watchful waiting are valid medical courses of action, highly recommended in many cases. Everyone needs to make their own decision based on all the available evidence and for that reason alone I feel that research is a good thing. We are in a unique field of medicine where the person you are dealing with is also the person who will be performing the surgery or other form of treatment. It is obvious to me that urologists who are surgeons will recommend surgery whereas those who specialise in radiotherapy will favour radiotherapy. This has, of course been proven time and time again. The final decision will be different for everyone depending on their age, PSA history, Gleason score and side effects of treatments and only by research will you be armed to make an informed decision.

As for me, I am now veering reluctantly towards intervention. I had the results of another PSA yesterday which was 8.3 (up from 7.2 in November) and at age 56 I think the cancer will get me before something else. I am having an MRI on Friday and will take it from there.

Good luck to you all.

Hi David, as I put on mary's post, my husband has just had Brachy a week ago, only real symptoms are lots of trips to the bathroom (both ends!) so quite disruptive on the sleep, but not too bad, some nights just twice but other 5 or 6 times. He is 57. NOt sure if you have seen my cooment on the post but I suggested taking a look on the prostate cancer uk community forum, you have to join but there are lots of people on there, you can click on their profile and see all their treatments, so I found real people stories very interesting. There are a lot with lowish psa 6-7 and they have advanced prostate cancer beyond treatment, so it made us think to get treatment. If you have prostatitis (I am sure you sad you have) this will raise the psa so as you said you may not have it anyway. But I found that site helpful anyway, though must admit a lot of them have a more advanced cancer.

When I say beyond treatment I mean things like brachy and radio therapy. When they are more advanced there are other treatments, but the complete cure is gone.

Hello Mary,

Firstly,  in understanding that you are going through a pretty tense time at the moment,  I  would like you to feel reassured of my goodwill and of being supportive of your Husband and yourself in your journey, no matter what you decide.

O. K. ,  we may not agree and alarm bells which ring in my head may be silent in yours.  But the Spirit of the person is always more valuable than any other aspect.  Perhaps more so,  when there are so many unknowns and variables.

I see that UCI is Univ of Cal, Irvine Med Center.  On Dr Aldering's Home Page he states (1st para ) : ' Advances in the early detection and treatment of this disease are believed to have sharply increased survival '.

He also says ' Prostate Cancer new treatment options are discussed as a vital part of the education process ',

Additionally,  there is this :  at ' UCI,  Prostate Cancer Clinical Outcomes have as their objective  : " Three landmark endpoints of radical prostatectomy : Cancer Comtol,  Potency and Continence ". 

It sounds to me like as a matter of pride,  they set the bar pretty high for themselves.  And if your Husband ultimately decides on intervention it would seem he could hardly do better.  ( I am quite satisfied with my own Medical Team,   but don't mind saying if I were in the U.S. I'd front up at Irvine ,  No problem !  But of course I would be turned away as I don't have that sort of money !! ).   Anyway,  it all sounds reassuring.  As do the Patient testimonies.

I'm not sure how to interpret the 3%.  Presumably it means that in cases alike to your Husband's  in terms of the amount and aggression of the P C ;  and in Patients of a similar age and ethnicity,  3 out of an hundred will ultimately die of the Cancer.  But again presumably,  that refers to Patients who are undergoing treatment.  I don't know of course but would imagine the odds for the untreated would not be so good.

Incidentally I have found through experience, that if as in your case a Surgeon expresses concern at a Patient's  reluctance to have surgery,  then it is probably a reliable indication that He most definitely needs it. 

Good of luck to you both.

Kind Regards,

Dudley

 

Hello David,

I'm sorry to learn that your PSA is still gaining momentum.

In the better Hospitals at least,  if not all of them,  Prostate Cancer Therapy is a Team effort involving the Urologist,  the Radiotherapist/ Oncologist and the Radiographer ; so you shouldn't have to fear territorialism or rivalry.

I wish you all the best as regards having both effective treatment and minimal side-effects.

Regards

Dudley

Yes Dudley this is a horrible desease.  My husband is 67 and has been living with it for 7 years.  the doctors give us the gloom and doom senario but it is amazing the transformation of my husband with some natural treatments.  we are mixing the best of both worlds and actually gaining the respect of some amazing well known doctors. My husband is in a support group with men who have had proton therapy,  robotics, (quite a few) radiation seeds, with chemo. NON of them are healthy they all have symptoms and the cancer has returned in the same place where the prostate used to be.  with that being said we have a freind who went to Cedar Sinai for the robotic and is having a great result 5 years later.  It is fasinating some of the new experimental things that are on the horizon and this cancer is slow growing which I find to be such a relief.  God Bless all you fighters......we have another friend who went to Dr Contras in Mexico and is cancer free......what to do but continue our journey

My heart goes out to you and all the men on the forum.  YOU are ALL my heros.!!!I My precious hubby has fought the fight without treatment and is thriving. but that is not to say we don't watch and wait with fine doctors and allot of research!!! I respect you all and pray one day cancer will be a thing of the past. God Bless you all and your families!!!

Dear Maryshiloh, I too am teaming mainline medicine with natural remedies. I should be most interested to learn of the key elements of your husband's attack on PCa. Perhaps they can be found in another Discussion on this forum?

Thankyou Mary and may God bless Hubby and you and bring you both to a safe haven. George

Good luck to you both Mary.  May your paths continue to wind less steeply towards Mordor.

Slow-growing is the key definition and as disconcerting as it may be to look over at those ailing in your Husband's Support Group,  it is probably worth reflecting that many of them might well be dead by now,  but for the treatment they have received ... and of course most would have loved ones ...  and there would be have been wailing and gnashing of teeth.  As bad as the scenario is for the Patient I believe it to be worse for them.

If the Cancer is anything other than slow-growing,  that is the choice :  Either treat,  or die ... ( and it is a lottery as to whether that would be comparatively slow or quick ) ... an unpleasant death.  No Patient is there  because he failed to make the 'right' choice as regards his own treatment.  There is only the variable of his clinical status and then : what is available,  what he is offered,  what he can cope with and what he can afford. Those of us that are obliged to stept onto our personal treadmill of disease/treatment,  do so when it is already running.  It is just a question of how fast and can we keep up.

I have neither been told of nor seen nor heard of anything in the Natural Therapies / Wholistic Medicine etal arena that either arrests or reverses the treadmill.  But if there is anything out there that slows it down then,  I am with George ... Would you please,  kindly share the information publicly.

Thankyou,

Dudley

P S.  Other than what the Team looking after me recommend,  which is :  Hydration,  Exercise and Rest.

G'day again...

I keep reading comments regards Prostate Cancer being 'Slow Growing' and have to ask...'Compared to what'...

My experience seems to be somewhat out of step with most that I read here so I guess my perspective may seem a little different at times...

The so-called safe option of 'Watchful Waiting' was never an option for me...

'Slow Growing' - I'd have to strongly disagree with this so don't just seek comfort that all is good and you will have plenty of time to make you decisions...

In just over 'two years' I have gone from having a normal healthy Prostate to now, after having had a Radical Prostectomy and Radation Therapy, I find that I now have Prostate Cancer in many Lymph Nodes and in one Rib...

Don't kid yourself that you have plenty of time and lots of options as whilst you are your enemy never sleeps...

 

Thanks Dudley, plus . . .weight in the healthy weight area.

A recent study cocluded there is an advantage in both survival and reduced side effecs. It was a small study and a much larger one was desired to confirm the findings.

Yes, Kombie Cruiser, matches my attitude. PCa is nasty and unpredictable. Give it as aggressive treatment as you can get. 

Hi Kombi,  I believe that your comments are your experience and for that I am heartfully sorry.  I mean no disrespect when I ask if you had the radical prostectomy and radation therapy why it is now in your rib and lymph, with all due respect your story is so common.  I am so confused how did the radical prostectomy serve its purpose.  Please don't be upset but this hits right to the root and why so many are apprehensive

yes I am sorry for using the word slow growing it sounded patronizing and I apologize.  NEVER MY INTENT

Mary, many thanks for your question and please never think I will get upset about things... My reason for searching for and entering this forum was to try to find others that were prepared to talk openly about their individual journey to date... I was not looking for any answers regards treatment options etc rather I was simply interested to see how others might be handling their lonely journey...

'How did the radical prostectomy serve it's purpose?'...let me open by stating that I don't believe we would be engaging if I had not had it done...simple!

Mary, I'm not sure if you have read through my track record...just click on my user pitcure and you can read what's has lead me to you...

I have said this before and I'm going to say it again now, 'The enemy that lives and grows in me is as individual as I am.'  This is a very personal thing and I can't for a moment ever think of a reason that anyone would want to give their lethal opponent any further head start than it already has...

I completely understand some of the possible reasons that everyone might have for avoiding starting their individual battle as I have lived in that 'After Space' for just over two years...

You write of your cancer partly in a metaphysical manner. This is intensly interesting for I think in that way too. Rather than highjack this thread by persuing this thought here I will open a Discusion on this subject. I hope you will join me there.