Re: Patient Voices -- was -- Things That Puzzle Me About PCa # 14 in an unlimited

[Guest guest]

Isn't one of the downsides of ADT, aside from the side effects, is that resistance to its beneficial effects can develop later? Certainly, with external beam radiation treatment and brachytherapy, it has a synergistic effect.

Louis. . .

To: ProstateCancerSupport Sent: Sat, February 6, 2010 10:40:42 AMSubject: Patient Voices -- was -- Things That Puzzle Me About PCa # 14 in an unlimited

[ This is a long post so go and make yourself a cup of tea / coffee and come back with it ..... Sam :-]Hello Folks & Terry,I agree with the point you make below, and my answer to "Why don't the doctors take on ADT much earlier?" is because of inertia, money and time. Even though it is now becoming acceptable to treat cyclic ADT / IHT as a non-investigational approach to PC, a lot of urologists will be moaning & griping because the procedures involved will require a new infrastructure and that means up front expenses and that dreaded word within the medical fraternity "change". For example anyone on IHT will need a pretty close feedback of PSA to ensure it does not rise (for whatever reason) above ~ 20 ng/ml. That means results will need to come directly from Chem. Path. and not via the urology secretary who is already overloaded with updating patient case notes for the next Urology Clinic. That means a change in the

attitude toward the patient, more patient self determination. Doctors will have to relinquish some of the close control they have over patient lives they have got used to having. I think it can be done but patient grouops will have to put pressure on local PCT (in the UK) or whatever local health administration there is in your own country. The most compelling argument we can provide is that although ADT costs money to start off with, the saving in terms of patient lives, improvement in quality of life, and last but not least LONG TERM FINANCIAL SAVINGS in medications will be justification for change. It is not pie in the sky either. There is an evidence base to show these aspects to be true, especially the long terms savings and the increased social value added. With that in mind allow me to introduce my new thread about "Patient Voices" which ties in with Terry's question quite nicely.Some of you will be aware that I have been

writing about prostate cancer for a few years. My first publication was an e-book in 2005 which I started promoting after having a steady PSAV at 10ng/ml for over a year during which time I took no hormones or castration drugs whatsoever. I allowed my testosterone levels to climb as high as possible naturally, building myself up physically with lots of weight and cardio exercise. This followed many years of uncertainty about where my PC was going. With serious LUTS and a PSA > 25ng/ml the year before diagnosis, my good doctors gave me a 2-5 year prognosis the following year in 1996 with a PSA>50ng/ml and G4 disease on biopsy and histologically determined T3N1M0 disease on surgery. Add to that capsular extension, removal of a section of bowel, lymph node and seminal vesicle involvement and I figured I was on to something a decade later and still kicking.This was serious disease that I had manage to bring under control against all

expectations. It contrasts with the moderate disease of typically low Gleason, lack of capsular extension or absence of metastatic disease, and characteristic low stage that many long term survivors enjoy. Don't get me wrong, I am not decrying them, good luck to everyone I say. Just be mindful of the realities. A lot of low grade cancers do need minimal if any treatment and have a good prognosis. High grade cancers in a young man are bad news and if anyone manages to get past five years then they have something to write home about. I am doing just that."Prostate cancer: a 21st century understanding" was my first tentative attempt at publication and a copy was circulated to willing proof readers and critics around 2004. The following year I published "Prostate cancer: a 21st century approach", this time with an ISBN(10) number 0-9549935-00 so I was able to archive it at the British Library. After surviving fourteen years I figured I had

come of age and so in 2009 I published a third version entitled "Prostate cancer: a 21st century perspective. Natural history, ecology and sociology of a malignant epidemic". This built on my previous work with a lot of extra research and stimulating discussion from , Henry, Cam, , Steve and others on various Internet groups to whom I am very grateful. From deciding to write the book in early 2008 I worked on it daily for a whole year and published the first version in February 2009 – ISBN(13) 9780954993511 I have sold and donated copies since Aug 2009. A urologist described it as "Erudite", and other doctor said it was "A wake up call for medicine". What you will notice when you read this book is a dogged appliance of evidence based principles to nail some myths in the world of prostate cancer science and medicine. This is a technical book, not everyone's cup of tea. What you will not find is a single "Patient Voice" describing

their PC journey.I'd like to change that and put a human face on surviving the prostate cancer experience, particularly from the point of view of challenging assumptions about having to remain permanently castrated after a diagnosis of advanced cancer. I know a lot of guys have found IHT and positive androgen management techniques including testosterone replacement therapy very useful. So, I am inviting anyone with an interest (patient or carer) to write an account of their experience. I think the best way to do this is to anonymize all contributions, so you can say what you like without fear of it coming back on you. However if you use any third party names, please make sure you have their permission before doing so.In exchange for the "voices" I will send contributors a of the third version when it is published. In the meantime, with contributors permission I will put their account here in the form of a blog:http://fitcare. org.uk/So, let's take it away as they say.~BTW .. Hello , hope you are well.I haven't heard from you about the book. Did it get to you ? I posted it a few weeks ago to the address you gave me.I would be particularly interested in what you have to say about Alpharadin. I am working on an extension to the section and I'd like to hear particularly from anyone who has been on the Alpharadin Trial, here in the UK mainly, but also in Australia, Brazil, Canada .... see below for list which I lifted off the site. Note that only one hospital in the whole of the US of A is involved in this world wide trial. My question is why is that ?http://clinicaltria ls.gov/ct2/ results?term= alpharadinTake care all,Sammy.ALSYMPCA

- Alpharadin Trial Study LocationsUnited States, LouisianaTulane University Hospital RecruitingNew Orleans, Louisiana, United States, 70112AustraliaRoyal Adelaide Hospital RecruitingAdelaide, AustraliaRoyal Brisbane and Women's Hospital RecruitingBrisbane, AustraliaToowoomba Regional Cancre Research Centre RecruitingToowoomba, AustraliaSouth Eastern Sydney Illawarra Area Health Service RecruitingWollongong, AustraliaRoyal North Shore Hospital RecruitingSt Leonards, AustraliaAustralia, New South WalesSt 's Hospital Not yet recruitingSydney, New South Wales, AustraliaLiverpool Hospital RecruitingSydney, New South Wales, AustraliaSydney Adventist Hospital RecruitingSydney, New South Wales, AustraliaPrince of Wales Hospital RecruitingSydney, New South Wales, AustraliaAustralia, South AustraliaQueen Hospital RecruitingAdelaide,

South Australia, AustraliaAustralia, TasmaniaRoyal Hobart Hospital RecruitingHobart, Tasmania, AustraliaAustralia, St 's Hspital RecruitingMelbourne, , AustraliaAustralia, Western AustraliaSir Gairdner Hospital RecruitingPerth, Western Australia, AustraliaBelgiumAZ Groeninge RecruitingKortrijk, BelgiumClinique Saint-Pierre RecruitingOttignies, BelgiumSt.-bethzieken huis RecruitingTurnhout, BelgiumCentre Hospitalier Universitaire de Liège RecruitingLiège, BelgiumBrazilSanta Casa Porto Alegre RecruitingPorto Alegre, BrazilHospital Universitario Pedro Ernesto RecruitingRio de Janeiro, BrazilClinica AMO RecruitingSalvador, BrazilSanta Casa Piracicaba RecruitingPiracicaba, BrazilHospital Lifecenter RecruitingBelo Horizonte, BrazilHospital Cancer Barretos RecruitingBarretos, BrazilUFRGS

RecruitingPorto Alegre, BrazilHospital Clementino Fraga Filho - UFRJ RecruitingRio de Janeiro, BrazilIBCC RecruitingSão o, BrazilHospital Luxemburgo RecruitingBelo Horizonte, BrazilHospital Israelita Albert Einstein RecruitingBarretos, BrazilHC-FMUSP RecruitingSão o, BrazilHospitalde Clinicas deUniversidade Federal do Parane Not yet recruitingCuritiba, BrazilCanadaMcGill University Health Centre RecruitingMontreal, CanadaOttawa Civic Hospital RecruitingOttawa, CanadaCanada, AlbertaCross Cancer Institute RecruitingEdmonton, Alberta, CanadaCanada, Nova ScotiaQueen II Health Sciences Centre RecruitingHalifax, Nova Scotia, CanadaCanada, OntarioLondon Health Sciences Center RecruitingLondon, Ontario, CanadaSunnybrook Health Sciences Centre RecruitingToronto, Ontario, CanadaCzech RepublicHospital Chomutov

RecruitingChomutov, Czech RepublicUniversity hospital Ostrava RecruitingOstrava, Czech RepublicMasaryk's hospital RecruitingUsti Nad Labem, Czech RepublicThomayer faculty hospital RecruitingPraha, Czech RepublicUniversity hospital Plzen RecruitingPlzen, Czech RepublicMasaryk memorial cancer institute RecruitingBrno, Czech RepublicHospital Pardubice RecruitingPardubice, Czech RepublicFranceCentre René huguenin Not yet recruitingSt Cloud, FranceCentre s François LECLERC Not yet recruitingDijon, FranceCentre Hospitalo-Universit aire Bicetre Not yet recruitingParis, FranceCHD La Roche sur Yon Not yet recruitingLa Roche Sur Yon, FranceCentre lambret Not yet recruitingLille, FranceCentre Francois Baclesse Not yet recruitingCaen, FranceCRLCC René Gauducheau Not yet recruitingSaint Herblain, FranceCentre Hospitalier Boulloche

Not yet recruitingMontbeliard, FranceHopital Henri Mondor Not yet recruitingCreteil, FranceInstitut Claudius Regaud Not yet recruitingToulouse, FranceCentre is Vautrin Not yet recruiting, FranceHopital Le Bretonneau Not yet recruitingTours, FranceGermanyUrologische Universitätsklinik Ulm RecruitingUlm, GermanyKlinikum der Philipps-Universitä t Marburg RecruitingMarburg, GermanyKlinik für Urologie und Kinderurologie Hannover RecruitingHannover, GermanyKlinikum der J.W.Goethe-Universi tät Recruitingfurt, GermanyUrologische Gemeinschaftspraxis Berlin RecruitingBerlin, GermanyUrologische Klinik und Poliklinik der Johannes-Gutenberg- Universitä t Mainz RecruitingMainz, GermanyUniversitätsklinikum Göttingen RecruitingGöttingen, GermanyVivantes Klinikum Am Urban RecruitingBerlin, GermanyUniversitätsklinikum Hamburg-Eppendorf

RecruitingHamburg, GermanyLübecker Onkologische Schwerpunkpraxis Not yet recruitingLübeck, GermanyKlinikum Dortmund gGmbH RecruitingDortmund, GermanyHong KongPamela Youde Nethersole Eastern Hospital RecruitingHong Kong, Hong KongTuen Mun Hospital RecruitingHong Kong, Hong KongQueen Hospital RecruitingHong Kong, Hong KongQueen Hospital RecruitingHong Kong, Hong KongIsraelTel Aviv Sourasky Medical Centre RecruitingTel Aviv, IsraelSoroka University Medical Centre RecruitingBeersheva, IsraelAsaf Harofeh Medical Centre RecruitingZerifin, IsraelMeir Medical Center RecruitingKfar Saba, IsraelBnai Zion Medical Center RecruitingHaifa, IsraelItalyOspedale Silvestrini RecruitingPerugia, ItalyIRCC-Candiolo RecruitingTorino, ItalyOspedali Riuniti di Bergamo RecruitingBergamo, ItalyIRST di Meldola

RecruitingForli, ItalyOspedale Niguarda Ca' Granda RecruitingMilano, ItalyOspedale de Reggio RecruitingEmilia, ItalyNetherlandsErasmus Medisch Centrum RecruitingRotterdam, NetherlandsCanisius Wilhelmina Ziekenhuis RecruitingNijmegen, NetherlandsMedical centre Alkmaar RecruitingAlkmaar, NetherlandsNorwayHaukeland University Hospital RecruitingBergen, NorwayST. Olavs Hospital RecruitingTrondheim, NorwayUniversitetssykehus et Nord-Nord HF RecruitingTromso, NorwayRadiumhospitalet RecruitingOslo, NorwayNordlandssykehuset HF RecruitingBodo, NorwayUllevål University Hospital RecruitingOslo, NorwayÅlesund Hospital RecruitingÅlesund, NorwaySenter for Kreftbehandling RecruitingKristiansand, NorwayPolandSzpital Uniwersytecki w Krakowie RecruitingKraków, PolandWojskowy Szpital Kliniczny nr 4 RecruitingWroclaw,

PolandKlinika Nowotworów Uk & #322;adu Moczowego RecruitingWarszawa, Poland & #346;wi & #281; tokrzyskie Centrum Onkologii RecruitingKielce, PolandAkademicki Szpital Kliniczny RecruitingWroc & #322;aw, PolandOddzial Urologii RecruitingSzczecin, PolandZaklad Medycyny Nuklearnej I Endokrynologii RecruitingGliwice, PolandSamodzielny Publiczny Szpital Kliniczny nr 4w Lublinie RecruitingLublin, PolandSamodzielny Publiczny Szpital Kliniczny Klinika Urologii RecruitingBialystok, PolandWojewodzki Szpital im. dr Jana Biziela Bydgoszcz RecruitingBydgoszcz, PolandSingaporeSingapore General Hospital RecruitingSingapore, SingaporeTan Tock Seng Hospital RecruitingSingapore, SingaporeOncoCare Cancer Centre RecruitingSingapore, SingaporeSlovakiaFaculty hospital F.D. Roosevelta RecruitingBanska Bysterica, SlovakiaFaculty hospital Bratislava (L.

Derera) RecruitingBrastislava, SlovakiaFaculty hospital Bratislava (Ruzinov) RecruitingBratislava, SlovakiaFaculty hospital Recruiting, SlovakiaFaculty Hospital Trnava RecruitingTrnava, SlovakiaFaculty Hospital J. A. Reimana RecruitingPresov, SlovakiaSpainH. de Santa Creu i Sant Pau RecruitingBarcelona, SpainH. Clínic i Provincial RecruitingBarcelona, SpainH. U. de Belvitge RecruitingBarcelona, SpainClínica Universitaria de Navarra RecruitingPamplona, SpainH.G.U. Gregorio Marañón RecruitingMadrid, SpainH.U. Lozano Blesa RecruitingZaragoza, SpainH. Reina Sofía RecruitingCórdoba, SpainHospital Clinico U. Santiago RecruitingSantiago de Compostela, SpainH. Vall d Hebron RecruitingBarcelona, SpainHospital Alcorcon RecruitingMadrid, SpainSwedenLänssjukhuset i Sundsvall-Härnö sand RecruitingSundsvall,

SwedenHospital in Gävle RecruitingGävle, SwedenLänssjukhuset Ryhov RecruitingJönköping, SwedenSahlgrenska Universitetssjukhus et RecruitingGöteborg, SwedenRadiumhemmet RecruitingStockholm, SwedenCentrallasarettet Växjö RecruitingVäxjö, SwedenNorrlands University Hospital RecruitingUmeå, SwedenLänssjukhuset i Kalmar RecruitingKalmar, SwedenUnited KingdomThe Royal Marsden Hospital RecruitingSurrey, United KingdomPrincipal Investigator: , Dr Plymouth Oncology Centre RecruitingPlymouth, United KingdomVelindre Hospital RecruitingCardiff, United KingdomLeicester Royal Infirmary RecruitingLeicester, United KingdomNottingham City Hospital RecruitingNottingham, United KingdomCastle Hill Hospital RecruitingCottingham, United KingdomBristol Haematology and Oncology Centre RecruitingBristol, United KingdomWeston

Park Hospital RecruitingSheffield, United KingdomChristie Hospital RecruitingManchester, United KingdomQueen beth Hospital RecruitingBirmingham, United KingdomSouthhampton General Hospital RecruitingSouthhampton, United KingdomUniversity Hospital Warwick RecruitingWarwick, United KingdomRoyal Surrey Hospital RecruitingSurrey, United KingdomMusgrove Park RecruitingTaunton, United KingdomDerby Royal Infirmatory RecruitingDerby, United KingdomSt. Jame's Hospital RecruitingLeeds, United KingdomBelfast City Hospital RecruitingBelfast, United KingdomNew Cross Hospital RecruitingWolverhampton, United KingdomClatterbridge Centre for Oncology RecruitingWirral, United KingdomThe Ipswich Hospital RecruitingIpswich, United KingdomQueen's Hospital RecruitingEssex, United KingdomThe Royal Sussex County Hospital RecruitingBrighton, United

KingdomThe Beatson Ventre RecruitingGlasgow, United KingdomMount Vernon Hospital RecruitingMiddlesex, United Kingdom>> > > I have written before about my puzzlement as to why prostate cancer is not> treated as the chronic disease which it is in so many cases. Why there is> such a difference in attitudes to heart conditions when the mortality rate> for heart failure in men is about ten times that for prostate cancer? Note,> before any takes me to task, I am not saying that all men diagnosed with> prostate cancer have an indolent form of the disease. There are very> dangerous types of prostate cancer that need early attention,

but as so many> studies are now confirming, the majority of cases are never likely to> develop into life threatening situations.> > > > Given that, why is there no focus on early, non-invasive management by way> of intermittent ADT (Androgen Deprivation Therapy) for early stage tumours?> Current theory is that ADT will starve very much larger populations of> tumours that are well advanced - even metastasised disease can be managed> well for many years with this therapy. So why not hit the small, contained> populations before they get going? Steve J often quotes Dr Strum, if a man> is hesitant about having early therapy, as saying: > > > > "There is NOWHERE in oncology where waiting for the tumor cell population to> increase (and to mutate) is in the better interests of the patient."> > > > If Dr Strum is

correct, and as an oncologist he certainly knows a good deal> more about the disease than I ever will, why do we not launch an early> attack on early stage prostate cancer using ADT? This would surely deal with> the tumour cells contained in the gland very effectively. And if the theory> that prostate cancer is a systemic disease by the time it is diagnosable is> correct, any cells that may have populated the rest of the body would also> be dealt with. There might be a very small risk of mutation from androgen> dependent cells to androgen independent cells, but this risk appears to be> significantly reduced with intermittent therapy even in large tumour> populations.> > > > Of course there are side effects to ADT, as there are with all therapies.> But in most early stage, low aggressive cases if an intermittent therapy is> applied - and especially if

it is what might be termed "ADT-lite" - just one> form of ADT instead of the real heavyweight CAB or ADT3 - the permanent side> effects will be few and far between.> > > > It makes sense to me in my dithering way - does it make sense to anyone> else. And if not, why not?> > > > > > All the best> > > > Terry Herbert > > I have no medical qualifications but I was diagnosed in '96: and have> learned a bit since then. > > My sites are at www.yananow. net <http://www.yananow. net/> and> <http://www.prostate cancerwatchfulwa iting.co. za/>> www.prostatecancerw atchfulwaiting. co.za > > Dr "Snuffy" Myers : "As

a physician, I am painfully aware that most> of the decisions we make with regard to prostate cancer are made with> inadequate data">

[Guest guest]

Sammy and All:

I deleted the section below as the post was getting a bit too long. My questions

are mostly non technical but rather of a practical nature.

I like the idea of consolidating and doing some analysis on the various

treatment protocols. However, it would be nice if the posts were put online.

A few questions then a comment.

Sammy said;

" I'd like to change that and put a human face on surviving the prostate cancer

experience, particularly from the point of view of challenging assumptions about

having to remain permanently castrated after a diagnosis of advanced cancer. I

know a lot of guys have found IHT and positive androgen management techniques

including testosterone replacement therapy very useful. So, I am inviting anyone

with an interest (patient or carer) to write an account of their experience. I

think the best way to do this is to anonymize all contributions, so you can say

what you like without fear of it coming back on you. However if you use any

third party names, please make sure you have their permission before doing so. "

1. Should the 'journals' or experiences be in a MS Word document?

2. It would be helpful to use a format that would help with the readability of

the various reports

As I mentioned earlier I thought this was an excellent idea. I think we should

open this up to a number of other groups and try to get as many men as possible

to share their experiences.

Any way those are my thoughts.

Steve Bergerson.

[Guest guest]

Hi Steve,

See below, in answer to your questions 1 & 2 ...

1. Should the 'journals' or experiences be in a MS Word document?

2. It would be helpful to use a format that would help with the readability of

the various reports

I use OpenOffice (http://www.openoffice.org/ website for download of the

OpenOffice software). This is much the same as MS Office but free to individuals

and in many ways a technically superior product. For example you can create PDF

files from your OpenOffice documents as well as make them MS Word compatible.

The superiority of PDF files is in their robustness - they are practically virus

immune; their transportability across platforms (MS Windows >> Linux >> Apple);

and their 'printability' using the Adobe Acrobat Reader. Sorry if this is

starting to sound like another Spam // Infomercial !!! I have no financial

interest in Open Office or Adobe, it is just that I have found them to do a much

better job than MS Word.

To continue with what Steve said,

As I mentioned earlier I thought this was an excellent idea. I think we should

open this up to a number of other groups and try to get as many men as possible

to share their experiences.

Thanks for taking this up Steve, I am looking forward to hearing from you.

Sam.

>

> Sammy and All:

> I deleted the section below as the post was getting a bit too long. My

questions are mostly non technical but rather of a practical nature.

>

> I like the idea of consolidating and doing some analysis on the various

treatment protocols. However, it would be nice if the posts were put online.

>

> A few questions then a comment.

> Sammy said;

> " I'd like to change that and put a human face on surviving the prostate cancer

experience, particularly from the point of view of challenging assumptions about

having to remain permanently castrated after a diagnosis of advanced cancer. I

know a lot of guys have found IHT and positive androgen management techniques

including testosterone replacement therapy very useful. So, I am inviting anyone

with an interest (patient or carer) to write an account of their experience. I

think the best way to do this is to anonymize all contributions, so you can say

what you like without fear of it coming back on you. However if you use any

third party names, please make sure you have their permission before doing so. "

> 1. Should the 'journals' or experiences be in a MS Word document?

> 2. It would be helpful to use a format that would help with the readability

of the various reports

>

> As I mentioned earlier I thought this was an excellent idea. I think we should

open this up to a number of other groups and try to get as many men as possible

to share their experiences.

>

> Any way those are my thoughts.

>

>

> Steve Bergerson.

>

[Guest guest]

Louis,

You are quite right about the downside of ADT, and that is one of the main

reasons I wrote the book and continue to update it. I could not have possibly

survived 15 years on ADT. But, as you say, ADT does synergise with other

treatments. Success (I maintain) all depends on timing. There is a saying " You

can have too much of a good thing " and this applies to ADT.

If you read this abstract at PubMed (linked to free full text) you will see that

" .. intermittent therapy should no longer be regarded as investigational .. "

http://www.ncbi.nlm.nih.gov/pubmed/19418833

Meaning - using 's metaphor - we have now proven beyond reasonable doubt

that the world is indeed 'spherical' (if not perfectely round ;-)

Cheers,

Sam.

> >

> >

> >

> > I have written before about my puzzlement as to why prostate cancer is not

> > treated as the chronic disease which it is in so many cases. Why there is

> > such a difference in attitudes to heart conditions when the mortality rate

> > for heart failure in men is about ten times that for prostate cancer? Note,

> > before any takes me to task, I am not saying that all men diagnosed with

> > prostate cancer have an indolent form of the disease. There are very

> > dangerous types of prostate cancer that need early attention, but as so many

> > studies are now confirming, the majority of cases are never likely to

> > develop into life threatening situations.

> >

> >

> >

> > Given that, why is there no focus on early, non-invasive management by way

> > of intermittent ADT (Androgen Deprivation Therapy) for early stage tumours?

> > Current theory is that ADT will starve very much larger populations of

> > tumours that are well advanced - even metastasised disease can be managed

> > well for many years with this therapy. So why not hit the small, contained

> > populations before they get going? Steve J often quotes Dr Strum, if a man

> > is hesitant about having early therapy, as saying:

> >

> >

> >

> > " There is NOWHERE in oncology where waiting for the tumor cell population to

> > increase (and to mutate) is in the better interests of the patient. "

> >

> >

> >

> > If Dr Strum is correct, and as an oncologist he certainly knows a good deal

> > more about the disease than I ever will, why do we not launch an early

> > attack on early stage prostate cancer using ADT? This would surely deal with

> > the tumour cells contained in the gland very effectively. And if the theory

> > that prostate cancer is a systemic disease by the time it is diagnosable is

> > correct, any cells that may have populated the rest of the body would also

> > be dealt with. There might be a very small risk of mutation from androgen

> > dependent cells to androgen independent cells, but this risk appears to be

> > significantly reduced with intermittent therapy even in large tumour

> > populations.

> >

> >

> >

> > Of course there are side effects to ADT, as there are with all therapies.

> > But in most early stage, low aggressive cases if an intermittent therapy is

> > applied - and especially if it is what might be termed " ADT-lite " - just one

> > form of ADT instead of the real heavyweight CAB or ADT3 - the permanent side

> > effects will be few and far between.

> >

> >

> >

> > It makes sense to me in my dithering way - does it make sense to anyone

> > else. And if not, why not?

> >

> >

> >

> >

> >

> > All the best

> >

> >

> >

> > Terry Herbert

> >

> > I have no medical qualifications but I was diagnosed in '96: and have

> > learned a bit since then.

> >

> > My sites are at www.yananow. net <http://www.yananow. net/> and

> > <http://www.prostate cancerwatchfulwa iting.co. za/>

> > www.prostatecancerw atchfulwaiting. co.za

> >

> > Dr " Snuffy " Myers : " As a physician, I am painfully aware that most

> > of the decisions we make with regard to prostate cancer are made with

> > inadequate data "

> >

>

[Guest guest]

sammy_bates wrote:

> ... So, I am inviting anyone with an interest (patient or

> carer) to write an account of their experience. I think the

> best way to do this is to anonymize all contributions, so you

> can say what you like without fear of it coming back on you.

> However if you use any third party names, please make sure you

> have their permission before doing so.

I am very leery of anonymous patient reports with no controls. I

have seen reports of people who " cured " their cancer by this or

that technique when there is no real evidence that they ever had

cancer at all. I remember one guy made a big pitch in

alt.support.cancer.prostate for his fairly elaborate website,

where he presented " compelling proof " that his macrobiotic diet

cured his PCa. He glossed over the fact that he went through

radiation and hormone therapy, which almost certainly was the

cause of the PSA drop he was so convinced he had induced in

himself by eating the right stuff.

Some guys report that they are doing wonderfully and are cured

only to go downhill and die a few months later. False stories of

cures are circulated intentionally by quacks who profit from

selling snake oil to vulnerable patients.

The number of cranks, crackpots and quacks in the cancer

literature is astronomical. If you solicit anonymous reports you

are encouraging them to send things to you that may be foolish or

downright lies.

Even if you could weed out the lies, which you can't since

they're often written by professional prevaricators who know just

what to say to make their stories believable, the number of true

believers in false therapies is still astronomical.

There is also a very serious selection problem here. The people

who tried this or that therapy and subsequently died, won't be

sending you any accounts of their experience. If 100 people

drink Umptifratz tea, 99 die, and one sends you an account of his

miraculous cure, you'll get a totally false picture of the

effects of Umptifratz tea.

Even the guys who are still alive but have progressing disease

are far less likely to write to you than the ones who, for one

reason or another (very often not the reason they think) are

doing okay. People aren't so motivated to write long accounts of

therapies that didn't work for them.

So if you want to read accounts, have at it. But if you want to

publish information that will help people to deal with cancer, I

think any statistician would tell you that your that your method

of soliciting anonymous accounts from patients is virtually

guaranteed to produce misleading and very possibly completely

false results.

Alan

[Guest guest]

Alan, thank you for you sensible, rational post. You sound like another

Randi, Gardner or Joe Nickell.

You have pointed out just about everything wrong with the kind of anecdotal

evidence that is used to promote woo-woo " alternative " medicine.

" ... So, I am inviting anyone with an interest (patient or carer) to write an

account of their experience. I think the best way to do this is to anonymize all

contributions, so you can say what you like without fear of it coming back on

you. However if you use any third party names, please make sure you have their

permission before doing so. "

I am very leery of anonymous patient reports with no controls. I have seen

reports of people who " cured " their cancer by this or that technique when there

is no real evidence that they ever had cancer at all. I remember one guy made a

big pitch in alt. support. cancer. prostate for his fairly elaborate website,

where he presented " compelling proof " that his macrobiotic diet cured his PCa.

He glossed over the fact that he went through radiation and hormone therapy,

which almost certainly was the cause of the PSA drop he was so convinced he had

induced in himself by eating the right stuff.

Some guys report that they are doing wonderfully and are cured only to go

downhill and die a few months later. False stories of cures are circulated

intentionally by quacks who profit from selling snake oil to vulnerable

patients.

The number of cranks, crackpots and quacks in the cancer literature is

astronomical. If you solicit anonymous reports you are encouraging them to send

things to you that may be foolish or downright lies.

Even if you could weed out the lies, which you can't since they're often written

by professional prevaricators who know just what to say to make their stories

believable, the number of true believers in false therapies is still

astronomical.

There is also a very serious selection problem here. The people who tried this

or that therapy and subsequently died, won't be sending you any accounts of

their experience. If 100 people drink Umptifratz tea, 99 die, and one sends you

an account of his miraculous cure, you'll get a totally false picture of the

effects of Umptifratz tea.

Even the guys who are still alive but have progressing disease are far less

likely to write to you than the ones who, for one reason or another (very often

not the reason they think) are doing okay. People aren't so motivated to write

long accounts of therapies that didn't work for them.

So if you want to read accounts, have at it. But if you want to publish

information that will help people to deal with cancer, I think any statistician

would tell you that your that your method of soliciting anonymous accounts from

patients is virtually guaranteed to produce misleading and very possibly

completely false results.

Alan

[Guest guest]

The most anyone can read into anecdotal posts is that the story is that man's experience of that drug, if it is done with good intent.

We have discussed that PCa can be different for different men

We know too that side effects are different with the same drug on different patients.

One mode of treatment is right for one man, but wrong for the next.

Hence the effect of Lupron or Zoledex treatment is different between different men. I for instance have lived a positive life using Zoledex continuously for a number of years, the main issue being increased lack of libido.

I do know that people like to read other's experiences and there is nothing wrong with this providing we don't say that caused that for Joe so I'll not do that or indeed that Joe stopped the cancer growth with that so it will do that for me.

Anyone who compiles anecdotal material has to check the motivation of the source, at the most it will point professional researchers to a new line of enquiry. There is a general feeling on these lists that the magic cure is like the phone call we get in the UK - you have won a holiday. Why? What is the catch? How much do I have to pay? What hard sell have we to sit through? I don't want a time share! In the same way we view any material that says this expensive poition cured me

In order to sell anything to those of us who are rightly sceptic, we have to be sure it is right for us, with lots of back up knowledge. We want to know where we are going, there has to be good reason to be a guinea pig. I used the square world analogy, because just now and then we have a theory that is argued against by the scientific bodies and turns out to be true or partially true. Hence the deeper thought required to see if other knowledge backs up the radical theory.

I don't think Sammy is saying stop doing what you are doing and do this, what he is saying that his research supports the fact that he has got benefit from his treatment regime. This might be right for some of you.

As I say I have given this a couple of days more but I don't want this to be the only subject we talk about.

[Guest guest]

All I have done is establish the first material cause of prostate cancer using

the evidence available in peer reviewed papers available on PubMed, PubMed

Central and so on. Implications for prevention, detection, therapy and so on

follow from the logical arguments that I present. Maybe it is a bit ahead of its

time.

>

> The most anyone can read into anecdotal posts is that the story is that man's

experience of that drug, if it is done with good intent.

>

> We have discussed that PCa can be different for different men

>

> We know too that side effects are different with the same drug on different

patients.

>

> One mode of treatment is right for one man, but wrong for the next.

>

> Hence the effect of Lupron or Zoledex treatment is different between different

men. I for instance have lived a positive life using Zoledex continuously for a

number of years, the main issue being increased lack of libido.

>

> I do know that people like to read other's experiences and there is nothing

wrong with this providing we don't say that caused that for Joe so I'll not do

that or indeed that Joe stopped the cancer growth with that so it will do that

for me.

>

> Anyone who compiles anecdotal material has to check the motivation of the

source, at the most it will point professional researchers to a new line of

enquiry. There is a general feeling on these lists that the magic cure is like

the phone call we get in the UK - you have won a holiday. Why? What is the

catch? How much do I have to pay? What hard sell have we to sit through? I don't

want a time share! In the same way we view any material that says this

expensive poition cured me

>

> In order to sell anything to those of us who are rightly sceptic, we have to

be sure it is right for us, with lots of back up knowledge. We want to know

where we are going, there has to be good reason to be a guinea pig. I used the

square world analogy, because just now and then we have a theory that is argued

against by the scientific bodies and turns out to be true or partially true.

Hence the deeper thought required to see if other knowledge backs up the radical

theory.

>

> I don't think Sammy is saying stop doing what you are doing and do this, what

he is saying that his research supports the fact that he has got benefit from

his treatment regime. This might be right for some of you.

>

> As I say I have given this a couple of days more but I don't want this to be

the only subject we talk about.

>

>

>