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

[Guest guest]

[ 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://clinicaltrials.gov/ct2/results?term=alpharadin

Take care all,

Sammy.

ALSYMPCA - Alpharadin Trial Study Locations

United States, Louisiana

Tulane University Hospital Recruiting

New Orleans, Louisiana, United States, 70112

Australia

Royal Adelaide Hospital Recruiting

Adelaide, Australia

Royal Brisbane and Women's Hospital Recruiting

Brisbane, Australia

Toowoomba Regional Cancre Research Centre Recruiting

Toowoomba, Australia

South Eastern Sydney Illawarra Area Health Service Recruiting

Wollongong, Australia

Royal North Shore Hospital Recruiting

St Leonards, Australia

Australia, New South Wales

St 's Hospital Not yet recruiting

Sydney, New South Wales, Australia

Liverpool Hospital Recruiting

Sydney, New South Wales, Australia

Sydney Adventist Hospital Recruiting

Sydney, New South Wales, Australia

Prince of Wales Hospital Recruiting

Sydney, New South Wales, Australia

Australia, South Australia

Queen Hospital Recruiting

Adelaide, South Australia, Australia

Australia, Tasmania

Royal Hobart Hospital Recruiting

Hobart, Tasmania, Australia

Australia,

St 's Hspital Recruiting

Melbourne, , Australia

Australia, Western Australia

Sir Gairdner Hospital Recruiting

Perth, Western Australia, Australia

Belgium

AZ Groeninge Recruiting

Kortrijk, Belgium

Clinique Saint-Pierre Recruiting

Ottignies, Belgium

St.-bethziekenhuis Recruiting

Turnhout, Belgium

Centre Hospitalier Universitaire de Liège Recruiting

Liège, Belgium

Brazil

Santa Casa Porto Alegre Recruiting

Porto Alegre, Brazil

Hospital Universitario Pedro Ernesto Recruiting

Rio de Janeiro, Brazil

Clinica AMO Recruiting

Salvador, Brazil

Santa Casa Piracicaba Recruiting

Piracicaba, Brazil

Hospital Lifecenter Recruiting

Belo Horizonte, Brazil

Hospital Cancer Barretos Recruiting

Barretos, Brazil

UFRGS Recruiting

Porto Alegre, Brazil

Hospital Clementino Fraga Filho - UFRJ Recruiting

Rio de Janeiro, Brazil

IBCC Recruiting

São o, Brazil

Hospital Luxemburgo Recruiting

Belo Horizonte, Brazil

Hospital Israelita Albert Einstein Recruiting

Barretos, Brazil

HC-FMUSP Recruiting

São o, Brazil

Hospitalde Clinicas deUniversidade Federal do Parane Not yet recruiting

Curitiba, Brazil

Canada

McGill University Health Centre Recruiting

Montreal, Canada

Ottawa Civic Hospital Recruiting

Ottawa, Canada

Canada, Alberta

Cross Cancer Institute Recruiting

Edmonton, Alberta, Canada

Canada, Nova Scotia

Queen II Health Sciences Centre Recruiting

Halifax, Nova Scotia, Canada

Canada, Ontario

London Health Sciences Center Recruiting

London, Ontario, Canada

Sunnybrook Health Sciences Centre Recruiting

Toronto, Ontario, Canada

Czech Republic

Hospital Chomutov Recruiting

Chomutov, Czech Republic

University hospital Ostrava Recruiting

Ostrava, Czech Republic

Masaryk's hospital Recruiting

Usti Nad Labem, Czech Republic

Thomayer faculty hospital Recruiting

Praha, Czech Republic

University hospital Plzen Recruiting

Plzen, Czech Republic

Masaryk memorial cancer institute Recruiting

Brno, Czech Republic

Hospital Pardubice Recruiting

Pardubice, Czech Republic

France

Centre René huguenin Not yet recruiting

St Cloud, France

Centre s François LECLERC Not yet recruiting

Dijon, France

Centre Hospitalo-Universitaire Bicetre Not yet recruiting

Paris, France

CHD La Roche sur Yon Not yet recruiting

La Roche Sur Yon, France

Centre lambret Not yet recruiting

Lille, France

Centre Francois Baclesse Not yet recruiting

Caen, France

CRLCC René Gauducheau Not yet recruiting

Saint Herblain, France

Centre Hospitalier Boulloche Not yet recruiting

Montbeliard, France

Hopital Henri Mondor Not yet recruiting

Creteil, France

Institut Claudius Regaud Not yet recruiting

Toulouse, France

Centre is Vautrin Not yet recruiting

, France

Hopital Le Bretonneau Not yet recruiting

Tours, France

Germany

Urologische Universitätsklinik Ulm Recruiting

Ulm, Germany

Klinikum der Philipps-Universität Marburg Recruiting

Marburg, Germany

Klinik für Urologie und Kinderurologie Hannover Recruiting

Hannover, Germany

Klinikum der J.W.Goethe-Universität Recruiting

furt, Germany

Urologische Gemeinschaftspraxis Berlin Recruiting

Berlin, Germany

Urologische Klinik und Poliklinik der Johannes-Gutenberg-Universität Mainz

Recruiting

Mainz, Germany

Universitätsklinikum Göttingen Recruiting

Göttingen, Germany

Vivantes Klinikum Am Urban Recruiting

Berlin, Germany

Universitätsklinikum Hamburg-Eppendorf Recruiting

Hamburg, Germany

Lübecker Onkologische Schwerpunkpraxis Not yet recruiting

Lübeck, Germany

Klinikum Dortmund gGmbH Recruiting

Dortmund, Germany

Hong Kong

Pamela Youde Nethersole Eastern Hospital Recruiting

Hong Kong, Hong Kong

Tuen Mun Hospital Recruiting

Hong Kong, Hong Kong

Queen Hospital Recruiting

Hong Kong, Hong Kong

Queen Hospital Recruiting

Hong Kong, Hong Kong

Israel

Tel Aviv Sourasky Medical Centre Recruiting

Tel Aviv, Israel

Soroka University Medical Centre Recruiting

Beersheva, Israel

Asaf Harofeh Medical Centre Recruiting

Zerifin, Israel

Meir Medical Center Recruiting

Kfar Saba, Israel

Bnai Zion Medical Center Recruiting

Haifa, Israel

Italy

Ospedale Silvestrini Recruiting

Perugia, Italy

IRCC-Candiolo Recruiting

Torino, Italy

Ospedali Riuniti di Bergamo Recruiting

Bergamo, Italy

IRST di Meldola Recruiting

Forli, Italy

Ospedale Niguarda Ca' Granda Recruiting

Milano, Italy

Ospedale de Reggio Recruiting

Emilia, Italy

Netherlands

Erasmus Medisch Centrum Recruiting

Rotterdam, Netherlands

Canisius Wilhelmina Ziekenhuis Recruiting

Nijmegen, Netherlands

Medical centre Alkmaar Recruiting

Alkmaar, Netherlands

Norway

Haukeland University Hospital Recruiting

Bergen, Norway

ST. Olavs Hospital Recruiting

Trondheim, Norway

Universitetssykehuset Nord-Nord HF Recruiting

Tromso, Norway

Radiumhospitalet Recruiting

Oslo, Norway

Nordlandssykehuset HF Recruiting

Bodo, Norway

Ullevål University Hospital Recruiting

Oslo, Norway

Ålesund Hospital Recruiting

Ålesund, Norway

Senter for Kreftbehandling Recruiting

Kristiansand, Norway

Poland

Szpital Uniwersytecki w Krakowie Recruiting

Kraków, Poland

Wojskowy Szpital Kliniczny nr 4 Recruiting

Wroclaw, Poland

Klinika Nowotworów Uk & #322;adu Moczowego Recruiting

Warszawa, Poland

& #346;wi & #281;tokrzyskie Centrum Onkologii Recruiting

Kielce, Poland

Akademicki Szpital Kliniczny Recruiting

Wroc & #322;aw, Poland

Oddzial Urologii Recruiting

Szczecin, Poland

Zaklad Medycyny Nuklearnej I Endokrynologii Recruiting

Gliwice, Poland

Samodzielny Publiczny Szpital Kliniczny nr 4w Lublinie Recruiting

Lublin, Poland

Samodzielny Publiczny Szpital Kliniczny Klinika Urologii Recruiting

Bialystok, Poland

Wojewodzki Szpital im. dr Jana Biziela Bydgoszcz Recruiting

Bydgoszcz, Poland

Singapore

Singapore General Hospital Recruiting

Singapore, Singapore

Tan Tock Seng Hospital Recruiting

Singapore, Singapore

OncoCare Cancer Centre Recruiting

Singapore, Singapore

Slovakia

Faculty hospital F.D. Roosevelta Recruiting

Banska Bysterica, Slovakia

Faculty hospital Bratislava (L. Derera) Recruiting

Brastislava, Slovakia

Faculty hospital Bratislava (Ruzinov) Recruiting

Bratislava, Slovakia

Faculty hospital Recruiting

, Slovakia

Faculty Hospital Trnava Recruiting

Trnava, Slovakia

Faculty Hospital J. A. Reimana Recruiting

Presov, Slovakia

Spain

H. de Santa Creu i Sant Pau Recruiting

Barcelona, Spain

H. Clínic i Provincial Recruiting

Barcelona, Spain

H. U. de Belvitge Recruiting

Barcelona, Spain

Clínica Universitaria de Navarra Recruiting

Pamplona, Spain

H.G.U. Gregorio Marañón Recruiting

Madrid, Spain

H.U. Lozano Blesa Recruiting

Zaragoza, Spain

H. Reina Sofía Recruiting

Córdoba, Spain

Hospital Clinico U. Santiago Recruiting

Santiago de Compostela, Spain

H. Vall d Hebron Recruiting

Barcelona, Spain

Hospital Alcorcon Recruiting

Madrid, Spain

Sweden

Länssjukhuset i Sundsvall-Härnösand Recruiting

Sundsvall, Sweden

Hospital in Gävle Recruiting

Gävle, Sweden

Länssjukhuset Ryhov Recruiting

Jönköping, Sweden

Sahlgrenska Universitetssjukhuset Recruiting

Göteborg, Sweden

Radiumhemmet Recruiting

Stockholm, Sweden

Centrallasarettet Växjö Recruiting

Växjö, Sweden

Norrlands University Hospital Recruiting

Umeå, Sweden

Länssjukhuset i Kalmar Recruiting

Kalmar, Sweden

United Kingdom

The Royal Marsden Hospital Recruiting

Surrey, United Kingdom

Principal Investigator: , Dr

Plymouth Oncology Centre Recruiting

Plymouth, United Kingdom

Velindre Hospital Recruiting

Cardiff, United Kingdom

Leicester Royal Infirmary Recruiting

Leicester, United Kingdom

Nottingham City Hospital Recruiting

Nottingham, United Kingdom

Castle Hill Hospital Recruiting

Cottingham, United Kingdom

Bristol Haematology and Oncology Centre Recruiting

Bristol, United Kingdom

Weston Park Hospital Recruiting

Sheffield, United Kingdom

Christie Hospital Recruiting

Manchester, United Kingdom

Queen beth Hospital Recruiting

Birmingham, United Kingdom

Southhampton General Hospital Recruiting

Southhampton, United Kingdom

University Hospital Warwick Recruiting

Warwick, United Kingdom

Royal Surrey Hospital Recruiting

Surrey, United Kingdom

Musgrove Park Recruiting

Taunton, United Kingdom

Derby Royal Infirmatory Recruiting

Derby, United Kingdom

St. Jame's Hospital Recruiting

Leeds, United Kingdom

Belfast City Hospital Recruiting

Belfast, United Kingdom

New Cross Hospital Recruiting

Wolverhampton, United Kingdom

Clatterbridge Centre for Oncology Recruiting

Wirral, United Kingdom

The Ipswich Hospital Recruiting

Ipswich, United Kingdom

Queen's Hospital Recruiting

Essex, United Kingdom

The Royal Sussex County Hospital Recruiting

Brighton, United Kingdom

The Beatson Ventre Recruiting

Glasgow, United Kingdom

Mount Vernon Hospital Recruiting

Middlesex, 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.prostatecancerwatchfulwaiting.co.za/>

> www.prostatecancerwatchfulwaiting.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 "

>