Re: Some medics need educating about PCa

[Guest guest]

Dear and everyone,

In answer to 's question: Looking back 18 months ago when I was

diagnosed with T4, PSA 2000 and widespread mets at the age of 53 in

the UK NHS, it was appalling.

It was holiday time so I did not get the consultant but a younger

radiologist. The curtains were pulled around my bed in a ward of six.

My wife and two teenage sons were present. We were told I had PC with

" 5 small spots on the bone " , would have Zoldadex which would probably

fail after 18 months. I was given no indication of alternative or

complimentary treatment options. I later saw the bone scan report via

my present GP and found out that I had " widespread " mets and had been

lied to. My GP at the time suggested a morphine implant saying " you

do not have to be in pain " as he helped me to the door. No further

visits to urologists or oncologists were arranged.The message I got

was that they only expected me to last a few months and was already

into palliatives, a nocebo rather than a placebo.

This all had the result of making us very cynical about conventional

medicine and this led us, in hindsight, to mismanaging the cancer.

it has taken us 18 months to learn that there are a lot more things

one can do, both conventionally and complimentary, and to try to

strike the right balance.

This is what would have worked for me:

(1) Being told with more privacy

(2) Being told honestly the situation and that, while with the PC I

had a tiger by the tail, there was a lot that both they and I could

do which could take me far beyond median survival rates

(3) An outline of the major conventional options eg the possibility

of IHT, Zometa, Vit D, maximum blockage, (we wish) early chem,

calcitriol, etc.

(4) Suggestions for what complementary measures we could take eg

diet, juicing, exercise, sleep, supplements, attitude, etc.

(5) Some kind of follow up support from a helpful oncologist rather

than a gatekeeper for the NICE guidelines

I changed my doctor to one who tries to help, but admits he knows

little. I'm still working my way through the politics of the NHS to

try to get treatments and oncologists who have some creativity in

their management of PC. It's the specialists that seem to get paid

so much just to fall back on ready made NICE menus that really annoy me.

So, it seems that our GPs can help but will never have time to really

know the subject. Our oncologists need to be

(a) More focused and knowledgeable on PC, less complacent - they need

much faster and better communications (see wikis below)

( More integrative of conventional and complementary options

(hell, even if they don't work biochemically they may be a great

placebo)

© More creative (Liebowitz may be right that 50% of success comes

from a proper management of the PC stages) with better collation and

communication of records (my GP and a second option oncologist could

not get my bone scans out of the original hospital)

(d) Work within an NHS framework that does not hold them or their

patients back from trying a range of options at whatever stage of the

PC (I'd be interested in target Strontium radiotherapy for my mets,

or vaccines ... what chance under UK NHS?)

Our community of PC men and carers could probably do with better

communications as well.

At present we use email newsgroup technologies. I think it may be

time to add wikis to this.

You may all already know Wikipedia. A wiki allows many people to

collaborate through their web browsers in reading, editing and

extending a collective resourcebase while also maintaining the

ability to edit. See: http://en.wikipedia.org/wiki/Main_Page . The

wiki I've used a lot takes less than an hour to set up and does all

one would need including listing the latest materials changed or

added. See http://www.projectforum.com/ .

For us knowledge translates directly into years and months of extra

quality of life. I owe a lot to lists lists like this and wonder if

any wikis on PC already exist or should we help create one. Hey, it

might also be a way of helping our oncologists become more creative!

In the business this is sometimes called " accelerating collective

wisdom " and it's a really useable and important new technology.

Perhaps it's one one key improvement we could all contribute to. I

for one would be happy to help.

Best regards

Will

> How did you feel about how the news was broken to you, could it

> have been done in a better way. Did you get follow up support, how

> could this be improved?