Re: New member's story

[Guest guest]

Hello

Welcome! You clearly believe in doing your homework and it's good to hear that

you found a doctor you had confidence in and that you're doing well after your

op. (I can understand your concerns but we've not encountered what you described

in Leeds.) Since you chose to go to the Netherlands I wondered if Dr Reitbergen

had mentioned Sinerem (known as USPIO or Combidex elsewhere) to you? It's a new

kind of scan being used there to detect problems with lymph nodes and it might

be useful to hear more about it if the topic had arisen.

Kind regards

On Sat, 25 Jun 2005 14:48:51 -0000 " Hellyer "

wrote:

Hello everyone.

I thought my story of my PC may be of use/interest to other members.

I notice that a lot of members do not state their age or location.

This is a shame because if you are in USA or Australia or UK then you

will have different health systems and different health cultures and

it may not be helpful to others to compare results even though we all

suffer from the same ailment. Any way here goes. I am aged 66 in

perfectly good health. I live in the city of Leeds in the UK. One day

I went to see the Doc. for a check up. I had my PSA measured at the

same time. The reason being that my father had died at 72 from Cancer

of the Prostrate. The results showed an increase in PSA since a year

ago. I kept my eye on it but it kept going up. So I went to see a

specialist at St 's Infirmary in Leeds. For those of you in the

UK the next bit will be familiar. The examination room was dirty. The

leather bed I had to lie on was not clean and did not have a clean

sheet of paper or cloth to lay on. The doctor did not wear any clean

or white clothing. He just stood there in his ordinary street

clothes. He did the digital examination in the normal way. He then

said I should have a biopsy. Fine, but I asked myself do I want these

half baked proffesionals playing around with me? For those outside

the UK I should mention that UK hospitals being politically based and

funded out of taxation have priorities other than health at their

head. UK hospitals are notorious for being riddled with MRSA as well

as c** dificilium and some other 'hard to get rid of bug'Every year

thousands of patients die from hospital acquired infection. My mother

did and so did the mother of the Tory leader. I did

not want to go to the dirty hospital and be messed around and get

MRSA. So I decided to go to Holland where there is no MRSA (yet) They

have it in France and Belgium by the way. I went to the Sint

Franciscus Gasthuis Rotterdam (SFG). I just picked it off a list on

Google. But am I glad I went there as I really landed on my feet. I

met the top man in Holland; Dr Reitbergen. He was great. He is the

only man in Holland who uses the Laparoscopic technique. He wore all

white clothing, spoke perfect English and so did all the others

including the nurses the secretaries etc. And what proffessionals

they were all, every one. Such a big improvement on the UK's

slipshod, muddle through approach. He did the biopsy and in two weeks

I had the result. It was positive. A Gleason 7. He pointed out the

various options. But the best one (his recommendation)seemed to be a

radical prostratectomy. We came back to England to think about it,

this was about December 2004. I decided that the only way forward

would be to take his advice and have the whole thing removed and

hopefully put an end to the cancer. By the way contacts in the UK who

had the same biopsy done in UK hospitals ended up with bladder

infections, shooting high temperatures etc . .and only just survived.

So in February 2005 I returned to Holland to have the RP. I had

it done on Feb 2nd on Feb 4th I was out and back home to my Dutch

hosts. After ten days I went back to SFG to have the catheter

removed. This was a good day because the Doctors told me that there

was no leaks and that the cancer was confined to within the prostrate

and therefore had not spread.I said a prayer of thanksgiving for

that. On February 16th I returned to Leeds UK. I have been making

progress ever since. At first I was totally incontinent but with time

and physio I have got more control over this. It is now almost Five

months since my RP and I am still using pads day and night. I still

dribble if I exercise, walk, bend, sneeze etc. But I am hoping it

will improve with time and doing the 'clenching'exercises. I have had

my PSA taken recently and it is 0.05 which as you all know is very

good. My Doc. here in the UK wants me to take Cialis to improve

circulation. Although this stuff is free to us in the UK it is

absolutely useless. It make me dizzy and and feeling lousy. Any one

else has the same reactions?

Just to let you know things are not all that bad over here. I met a

man my age who went through the same thing but in Leeds. Although he

did not have the Laparoscopic technique and was in hospital for three

weeks due to having a re-operation. He did not get MRSA and seemed

to be at the same stage of improvement as myself. And of course his

op. was free whereas mine cost me over £4,300 but boy was it worth

every penny.

Well folks thats my story so far. I hope it has been of some use

to some of you. But wether you are in UK , USA or where purity of

health care has been infected by money, politics or professional

pride then I recommend SFG and Dr. Reitbergen.

Good bye and God bless tyou all.

PAUL Hellyer

[Guest guest]

Hey I am 58 yrs old and have PC also. My Doc in the USAdid a routine PSA test in May of 2004 it was 4.3He recommeded I see the Urologist. Went back to theDoc in November of 2004 because I was urinating Bloodand had Blood in the siemen. This was nothing new butdue to the HMO changes here I changed Doctors, ThankGOD! This had been going on for several years and myprevious Doc said it could be caused by a number ofthings and didnt think it was serious, so I put itoff. To make a long story short my PSA had shot up to11.6 in 6 months. MY Gleason scale after the bioposywas a total 7+ entire left side. Went in to have theRP and it has already hit the Nodes, a 2cm tumorGleason 6. The took the node and sewed me back up. Sohere I sit up the creek and no paddle. Im on Zolodexand for now my PSA has dropped. If no new treatmentsare found soon the outcome is a sure thing for me. This being said, Support by family, frends, co-workersmean allot I occasionaly drop in and visit the INETand look around but the more I do the more depressed Ibecome.RegardsSam

Hi Sam,

DON'T EVER GIVE UP HOPE!!!! It is not a death sentence. You have

lots of options and I am sure that you will be okay.

I wish you all the bestAubrey Pilgrim, DC (Ret.)Author of A Revolutionary Approach to Prostate Cancer-Read the original book for free at: www.prostatepointers.org/prostate/lay/apilgrimRead the new edition for free at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

[Guest guest]

Hello , No I never heard of Sinerem. But Dr

Rietbergen did not remove the lymph glands as he did

not think there was any need to.

With all good wishes

PAUL H . . .

--- yorkiedip@... wrote:

---------------------------------

Hello

Welcome! You clearly believe in doing your homework

and it's good to hear that you found a doctor you had

confidence in and that you're doing well after your

op. (I can understand your concerns but we've not

encountered what you described in Leeds.) Since you

chose to go to the Netherlands I wondered if Dr

Reitbergen had mentioned Sinerem (known as USPIO or

Combidex elsewhere) to you? It's a new kind of scan

being used there to detect problems with lymph nodes

and it might be useful to hear more about it if the

topic had arisen.

Kind regards

On Sat, 25 Jun 2005 14:48:51 -0000 " Hellyer "

wrote:

---------------------------------

YAHOO! GROUPS LINKS

Visit your group " ProstateCancerSupport " on the

web.

[Guest guest]

Sam when you hear this you have to remember that this is an average.

Some men will survive significantly longer. PCa is many different types

of cancer.

Kathy

Re: New member's story

Why? I became really

excited about a vaccine, the concept seemed promising

until I got to the end and found extended life by 2

months.

[Guest guest]

I know, I have some other issues to go along with the

PC. My kidneys are at 46 & 48% and I have 3 stints in

my heart. One thing for sure " God wont give you more

than you can stand " and going through this senerio

everyone should be glad that we " all of us " never

know when the end will come. It could be in many years

or could come from an accident tomorrow. It just has

really helped me as a person, to have people to have a

civilized discussion about our common problem. I say

this because if you look around there is always

someone else with a worse problem than your own. I

have made peace with my maker, I have good days and

bad days which is to be expected. Somehow it just

seems really cruel the way mine happened. I could have

gone on fat dumb and happy for another few years

without the bad news. So for sure the only thing in

life is uncertainity and you deal with what you get,

any way you can. " This is life according to Sam "

Keep stroken and never look back!

Thanks

--- Kathy Meade wrote:

> Sam when you hear this you have to remember that

> this is an average.

> Some men will survive significantly longer. PCa is

> many different types

> of cancer.

>

> Kathy

>

> Re: New member's

> story

>

> Why? I became really

> excited about a vaccine, the concept seemed

> promising

> until I got to the end and found extended life by 2

> months.

>

>

>

____________________________________________________

Yahoo! Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.yahoo.com

[Guest guest]

Hi Sam,

We have alot in common. I had a Gleason 7, lymph node involvement, seminal

vessicles, too. My doc gave me 2 years to live 1 year ago.

I'm 60 years old and in the computer business too, and I think like you do.

I'm not giving up either but I'm quite scared.

B

Conroe, TX

Re: New member's story

> Im sorry, I havent given up hope. I dont want anyone

> to take advice from me Im just talking as I think

> about things. Sure there are allot of treatments out

> there that offer extended life or relief from pain,

> but im not counting on them. Why? I became really

> excited about a vaccine, the concept seemed promising

> until I got to the end and found extended life by 2

> months. I just read s story and thought I would

> add mine to the list. Im a fairly happy type man

> with a fine family and a few very close friends. My

> greated flaw I guess is sinse I work in the computer

> field I tend to think like one. I execute 1 line at a

> time. Whats right thingking for me maybe isnt the

> right way of thinking for others.

> Thanks Sam

>

> --- APilgrm@... wrote:

>

>>

>>

>> In a message dated 6/26/2005 3:45:04 P.M. Eastern

>> Daylight Time,

>> smcdaniel2@... writes:

>>

>> Hey

>>

>> I am 58 yrs old and have PC also. My Doc in the USA

>> did a routine PSA test in May of 2004 it was 4.3

>> He recommeded I see the Urologist. Went back to the

>> Doc in November of 2004 because I was urinating

>> Blood

>> and had Blood in the siemen. This was nothing new

>> but

>> due to the HMO changes here I changed Doctors,

>> Thank

>> GOD! This had been going on for several years and

>> my

>> previous Doc said it could be caused by a number of

>> things and didnt think it was serious, so I put it

>> off. To make a long story short my PSA had shot up

>> to

>> 11.6 in 6 months. MY Gleason scale after the

>> bioposy

>> was a total 7+ entire left side. Went in to have

>> the

>> RP and it has already hit the Nodes, a 2cm tumor

>> Gleason 6. The took the node and sewed me back up.

>> So

>> here I sit up the creek and no paddle. Im on

>> Zolodex

>> and for now my PSA has dropped. If no new treatments

>> are found soon the outcome is a sure thing for me.

>>

>> This being said, Support by family, frends,

>> co-workers

>> mean allot I occasionaly drop in and visit the INET

>> and look around but the more I do the more depressed

>> I

>> become.

>>

>> Regards

>> Sam

>>

>>

>> Hi Sam,

>>

>> DON'T EVER GIVE UP HOPE!!!! It is not a death

>> sentence. You have

>> lots of options and I am sure that you will be okay.

>>

>>

>>

>> I wish you all the best

>>

>> Aubrey Pilgrim, DC (Ret.)

>> Author of A Revolutionary Approach to Prostate

>> Cancer-Read the

>> original book for free at:

>> www.prostatepointers.org/prostate/lay/apilgrim

>> Read the new edition for free at

>> _http://www.cancer.prostate-help.org/capilgr.htm_

>> (http://www.cancer.prostate-help.org/capilgr.htm)

>> Dr. E. Crawford is co-author of the revision

>>

>

>

>

>

> __________________________________

> Yahoo! Mail

> Stay connected, organized, and protected. Take the tour:

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>

>

>

[Guest guest]

--- sam mcdaniel wrote:

> Keep stroken and never look back!>

That's right! Carpe Diem! (Did I spell that right?)

.

[Guest guest]

Yep sounds like were in the same leaky boat. You know

I

consider myself a logical type of thinker, no sugar

coatings. I'm gonna tell you that at some point your

gonna sit down and have a good old cry. It was almost

3 months after I got the news that it hit me. I cried

like a baby. However like the Dung Beetle I rolled it

all up and decided to get on with it for as long as I

can. I know im going probally close to the same time

you are give or take a few.

I made peace with everyone I could think of, that I

may have ever offended. Including my maker. Cried some

more and carried on. Im not looking back and IMO you

shouldnt either. But what do I know. I cant even

spell.

sam

--- RJ wrote:

> Hi Sam,

>

> We have alot in common. I had a Gleason 7, lymph

> node involvement, seminal

> vessicles, too. My doc gave me 2 years to live 1

> year ago.

>

__________________________________________________

[Guest guest]

Sam,

As the saying goes, FOR EVERY CLOUD THERE IS A SILVER LINING . Yours is

no exception. Your surgeon who sewed you up after discovering lymph node

involvement did you a big favor. I don't minimize the cut from your belly

button down but that is minor compared to the actual removal of the

prostate. My guess is that your surgeon wanted to do an exploratory

routine for nodal involvement first, a common procedure although there

are a variety of methods of doing that exploratory surgery, some

relatively less invasive but they all involve cutting. There's a

noninvasive procedure called Prostascint Scan but that is only 50%

reliable. By not proceeding with the prostatectomy, that might have freed

you up to consider other options and I am not just referring to hormone

therapy.

Earlier, I told you that I initially begged urologists to do an RP on me

and they all refused because my high stats suggested the possibility that

the cancer had already gone outside the prostate and possibly invaded the

lymph nodes. And then I asked one urologist, " How about removing my

prostate and then doing external radiation afterwards? " His answer was:

" With all that surgery, you don't want to do any radiation afterwards. "

What that could mean is that since they did not poke around inside, you

might still be elibible for radiation therapy such as brachytherapy, high

dose radiation or even IMRT. Of course, as you read in my own story, I am

partial toward proton beam therapy because unlike traditional radiation

(photon), proton does not harm surrounding tissue as it goes in to your

body (and out). Proton is precisely targeted toward the prostate gland

(and seminal vescles as needed) leaving healthy cells unharmed. So I

would suggest talking to your urologist, or as many urologists you can

find who will listen to you, and ask them if after your incision is

healed, you can undergo radiation therapy of some kind. For all you know,

that might be what they are planning for you. In that case, the Zoladex

shot would be just to give you time for the next step.

I am surprised, though, that your doctor put you on Zoladex first before

Casodex. It is usually the other way around. A number of urologists will

start you on Casodex for two to three weeks to prepare your for the

Zoladex shots. The reason for this is that Zoladex has an initial

side-effect called testorone flare, which temporarily increases your

testosterone production before tapering off and the doing its job of

reducing your testosterone till eventually you have the chemical

equivalent of castration. Casodex blocks the initial flare. However,

don't panic. The flare is temporary. Plus taking Casodex is no piece of

cake, either. Be sure that in your succeeding blood tests, ask for a

testosterone count. Do your homework and find out what a normal

testosterone count is.

Relax and enjoy the ride. Look for things that make you happy and

unstressed. I like rummaging through old photos and reminiscing about all

the good times. Sharing with others, like you are doing, is very

therapeutic. Some will not want to hear about your illness so just avoid

them. Your circle of support will grow and that is one of the good things

about all this.

Very best,

Fred

> Date: Tue, 28 Jun 2005 05:04:16 -0700 (PDT)

>

> Subject: Re: Re: new member's story

>

> they started the RP but when the found envasion into

> the lymph system they stopped and stapled me up. They

> did take one node with a 2cm tumor. I still have my

> prostate. Im on zoladex now. Doc says were saving the

> casodex for later. I was cut from my belly button

> down!

>

> sam

>