Re: A direction that appears to be the future for PCa treatment

[Guest guest]

Kathy

Thanks for this.

So many of our posts are from people who have had overtreatment or who weren't diagnosed with agressive cancer early enough. The sorting of the tigers from the pussy cats is bound to lead to better treatment (or not treatment) decisions. I'm glad it looks as though the researchers have found a lead.

I remember having blood taken to send to the Royal Marsden in London for them to look at the genetics of my family and I had to include information of anyone else with early diagnosis of PCa in the bloodline. This was part of the further study. I know Professor Maitland at York is also working in this field. About 20 members of the York group have been invited to look at his laboratory and chat about his work in September.

Best wishes

[Guest guest]

,

This is fantastic. Patient research advocates can make a tremendous difference in the process. Don't hesitate to ask questions or bring up issues when you are there. Be careful not to appear antagonistic. researchers can be afraid of patient advocates and they may get defensive and that will stop dialogue. I have seen it happen. I cuts off future communication unfortunately that could help everyone I am sure that your group will find the balance. :-)

Let us know how it goes. I am interested.

Kathy

-----Original Message-----From: Metcalf Sent: Monday, June 07, 2004 10:27 AMTo: ProstateCancerSupport Subject: RE: A direction that appears to be the future for PCa treatment

Kathy

Thanks for this.

So many of our posts are from people who have had overtreatment or who weren't diagnosed with agressive cancer early enough. The sorting of the tigers from the pussy cats is bound to lead to better treatment (or not treatment) decisions. I'm glad it looks as though the researchers have found a lead.

I remember having blood taken to send to the Royal Marsden in London for them to look at the genetics of my family and I had to include information of anyone else with early diagnosis of PCa in the bloodline. This was part of the further study. I know Professor Maitland at York is also working in this field. About 20 members of the York group have been invited to look at his laboratory and chat about his work in September.

Best wishes

[Guest guest]

[ Metcalf] Kathy you said:-

,

This is fantastic. Patient research advocates can make a tremendous difference in the process. Don't hesitate to ask questions or bring up issues when you are there. Be careful not to appear antagonistic. researchers can be afraid of patient advocates and they may get defensive and that will stop dialogue. I have seen it happen. I cuts off future communication unfortunately that could help everyone I am sure that your group will find the balance. :-)

Let us know how it goes. I am interested.

Kathy[ Metcalf]

Well we have had Prof Maitland at our group meetings. He is a down to earth man who has the patient's interst at heart. We find no reason to be aggressive with him, he has an excellent manner.

Off to St 's, South London tomorrow to see how the cyclophosphamide is doing - it may be another month before l know for certain.

I just came off the phone from talking to Ian F from Toronto, I thought he had telephoned from Canada, until he said he is enjoying our sunshine in England - the south. We expect a 30 degree centigrade (86 F) temperature tomorrow but cooling to a pleasanter 21 on Wednesday.

[Guest guest]

A radiation oncologist I saw at a hospital in eastern Massachusetts

actually had the stones to say to me: " What, are you shopping around? "

" You're damned right I am! This is the only body I have, this time

around. " I didn't go back to see him. He was also one of the ones who

told me that it would be impossible for me to get the (combo rads)

therapy that my research was pushing me toward.

Pity the poor soul who doesn't advocate for himself. It's a scary thing,

to be told that there's a mushroom growing in your groin that can lead

to incontinence, impotence and eventually premature death; a miserable

death at that. I guess that's why most guys continue to go with the

first opinion, that of the urologist.

Surgeons cut, rad techs burn, chemists poison, and when all ya've got's

a hammer, everything looks like a nail.

Do shop around. Do ask questions and do demand whole answers. Seems

there's a whole lot of ignorance and intellectual snobbery in the

medical community. Don't take what the guy ate the night before for

answers. Shop around.

Kathy Meade wrote:

> ,This is fantastic. Patient research advocates can make a

> tremendous difference in the process. Don't hesitate to ask questions

> or bring up issues when you are there. Be careful not to appear

> antagonistic. researchers can be afraid of patient advocates and they

> may get defensive and that will stop dialogue. I have seen it happen.

> I cuts off future communication unfortunately that could help everyone

> I am sure that your group will find the balance. :-)Let us know how

> it goes. I am interested.Kathy

>

Pterodactyl

> --

> Killed for her conscience

> Remember Corrie

> was murdered

> http://www.palsolidarity.org/

>