Re: Information from specialists and consultants

[Guest guest]

,

I would embrace screening fully if I could rely on the integrity of the Dr's to fully inform men of their options. It is a disgrace what is going on at the moment.

As for doctors attending awareness sessions, a couple of years ago our support group had the privilege of a lecture from Dr Myers. We sent out invitations to all our health care groups, GP's etc. The admission was free and we had a buffet afterwards. I can tell you that out of dozens of invitations sent to GP's, only one turned up. This in an area that has one of the highest cancer rates in the UK.

If it's not about money, how about the fact that my uro has taken me off the hospital telephone contact list for the newly diagnosed because I give people 'Too much information' ? This same uro operates on men with PSA's that other uros wouldn't dream of operating on. This same uro doesn't give a damn about the side effects of the treatment he administers. This same uro operates on men with insignificant PCa without informing them of alternative treatments. He allows men to believe that they only have a short time in which to make up their minds when in effect their cancer may not cause them any problems for at least 10 years. (I know this from some men who have had a second opinion)

Honesty from MDs? Phooey!

[Guest guest]

I wonder if the problem is all greed. It maybe the older consultants who do not have time or make time to update themselves about new methods. There is a lot of stress in the clinics of NHS hospitals and again this can take it's toll. I think if a study was carried out you would be right (unfortunately for patients) in some cases and other reasons would figure quite often in others.

I also know that front line GPs have trouble keeoing up to all specialisms and the urologists have a deuce of a job getting GPs to attend awareness sessions. I do NOT hold it against my GP but he failed to spot an abnormality on my prostate by digital rectal examination, not because he didn't look but because he hadn't the experience of the urologist who did it. My PSA was only 3.7 but at 50 years old the urologist thought it more significant than the GP.

We still have a lot of awareness to impart all around.

I know from previous correspondence we differ on wanting screening but we agree whle heartedly on the wish to fully inform those who are newly diagnosed.

Best wishes to you

-----Original Message-----From: coolerking5@... Sent: 28 December 2002 23:16To: ProstateCancerSupport Subject: Re: Information from specialists and consultants

Why don't hospital clinics keep Prostate Cancer Charity leaflets to handout?Why do the consultants push there own specialism and rubbish all others?Simple answer to both questions . MONEY!!!!!!!!!!!! & GREED!!!!!!!!!!I heard on the news today that hospital consultants are to be offered more 'incentives'In days gone by the incentive would be to save peoples lives and do a good job. What incentive do the voluntary workers in hospitals, like the WRVS, need to do their work? It's high time that the greedy consultants were told 'Either work for the NHS for a decent salary, or, go private, but you can't do both' That would really be a radical move.

[Guest guest]

,

The Information from specialists and consultants apparently varies widely between individual hospitals and individual consultants.

From the experience of members of our Support Group it is quite clear that in Aberdeen, if you are seen by an urologist emphasis will be placed on radical prostatectomy or orchidectomy radiotherapy may be mentioned but as a secondary line of attack.

If you are seen by an oncologist, Radiotherapy will be the main treatment option considered.

There is ,allegedly , a forum of consultants from both urology and oncology departments who are supposed to consider the best options for each patient but this seems to have no effect, if it in fact exists!

Brachytherapy is not mentioned at all as it is not practised in Aberdeen The only way any patient can obtain

this treatment is to read up about it himself, see if he meets the criteria ( Gleason score < 4; PSA <10 and small volume prostate gland.) and insist on a second opinion at Edinburgh - the nearest place practicing Brachytherapy. I know of two Aberdeenshire patients who have successfully used this approach.

In my own case I was probably an informed patient, having downloaded some 40 pages of information from the Prostate Cancer Charity website after my biopsy but before diagnosis and sent for their booklet..

When I was seen by a consultant urologist to be told I had locally advanced prostate cancer, I was able to ask for my PSA reading (49.7); Gleason score (4+3=7) and be advised that all six biopsy needle samples were positive. The urologist then gave me more information on the treatment options than any of my group members seem to have had. He still emphasised radical prostatectomy, if MRI and Bone Scans were clear, but did in fairness describe the side effects. If I was to take this route I had to give a quick decision, subject to clear scans, since I was already 70yrs old and beyond this age. He also gave the option of orchidectomy or medical Hormone Therapy,. He said to consult with my GP and come back with my decision. Due to an existing heart condition making surgery more risky, I opted for the medical Hormone Therapy which I have now been on for four years.

I think there is a universal need for all patients to be given information on all treatment options and their side effects as soon after diagnoses as they are capable of taking it in. This will vary with patients and on how much pre-knowledge they have Consultants can not do this in the limited consultation time given at diagnosis.

Nurse Specialists at urology/oncology departments are ideally placed to provide information and trained counsellors at Prostate Cancer Support Groups can give support and information at a rate to suit the patients ability to take it in. All pressure on patients to make quick decisions before they are fully informed and appreciate the alternatives must be removed. A delay of weeks or even a month or two will have no adverse effect in the vast majority of cases. All hospitals must set up suitable arrangements for providing patients with support and information following diagnosis.

Regards,

RE: Information from specialists and consultants

I wonder if the problem is all greed. It maybe the older consultants who do not have time or make time to update themselves about new methods. There is a lot of stress in the clinics of NHS hospitals and again this can take it's toll. I think if a study was carried out you would be right (unfortunately for patients) in some cases and other reasons would figure quite often in others.

I also know that front line GPs have trouble keeoing up to all specialisms and the urologists have a deuce of a job getting GPs to attend awareness sessions. I do NOT hold it against my GP but he failed to spot an abnormality on my prostate by digital rectal examination, not because he didn't look but because he hadn't the experience of the urologist who did it. My PSA was only 3.7 but at 50 years old the urologist thought it more significant than the GP.

We still have a lot of awareness to impart all around.

I know from previous correspondence we differ on wanting screening but we agree whle heartedly on the wish to fully inform those who are newly diagnosed.

Best wishes to you

-----Original Message-----From: coolerking5@... Sent: 28 December 2002 23:16To: ProstateCancerSupport Subject: Re: Information from specialists and consultants

Why don't hospital clinics keep Prostate Cancer Charity leaflets to handout?Why do the consultants push there own specialism and rubbish all others?Simple answer to both questions . MONEY!!!!!!!!!!!! & GREED!!!!!!!!!!I heard on the news today that hospital consultants are to be offered more 'incentives'In days gone by the incentive would be to save peoples lives and do a good job. What incentive do the voluntary workers in hospitals, like the WRVS, need to do their work? It's high time that the greedy consultants were told 'Either work for the NHS for a decent salary, or, go private, but you can't do both' That would really be a radical move.

[Guest guest]

This is proving to be an excellent thread bringing out the variation across the country.

When I was diagnosed I was offered consultation with both urologist and oncologist - they both initially told me of the benefits of their treatment and the disbenefits of the other - but it was the oncologist who said that as I had soreness and inflammation of the urinary system he advised that Brachytherapy would create problems. All in all looking back on a difficult time I had a fairer crack of the whip at York than it seems we have elsewhere!

No doubt Pat at Angel Walk will be very interested - tjhough I think she has an idea already what the problems are!

[Guest guest]

Nurse Specialists at urology/oncology departments are ideally placed to provide information and trained counsellors at Prostate Cancer Support Groups can give support and information at a rate to suit the patients ability to take it in. All pressure on patients to make quick decisions before they are fully informed and appreciate the alternatives must be removed. A delay of weeks or even a month or two will have no adverse effect in the vast majority of cases. All hospitals must set up suitable arrangements for providing patients with support and information following diagnosis

I agree with everything you say, but it will never happen.

I was removed from my hospital's patient contact list for being 'unhelpful' which is hospital speak for giving out too much information ( a contradiction in terms )

I see it happen week in week out - get them roped in before they find out too much.

The day will come when we look back on this period like we do on blood-letting now.

It's a disgrace!

All the best for the New Year

[Guest guest]

Time do change , when I was first diagnosed (Nov 2000) and asked about

Brachy I was told " it is still experimental" now the specialist nurse

was telling last week that they are fighting for funds to start a Brachy

unit <smile>

I understand many hospitals have the equipment to do brachytherapy but lack the expertise to do it. They know the game is up but rather than lose the money (which lets face it, is what it is all about) to another Hospital Trust, they are prepared to offer men their outdated treatments.

[Guest guest]

Hi

> This is proving to be an excellent thread bringing out the variation across

> the country.

It sure is <smile> and it is extremely interesting

>

> When I was diagnosed I was offered consultation with both urologist and

> oncologist - they both initially told me of the benefits of their treatment

> and the disbenefits of the other - but it was the oncologist who said that

> as I had soreness and inflammation of the urinary system he advised that

> Brachytherapy would create problems. All in all looking back on a difficult

> time I had a fairer crack of the whip at York than it seems we have

> elsewhere!

>

York, home of Brachy in the UK <smile>

My consultant also referred to a oncologist, slight snag though, he was a

oncologist also specialised in radiotherapy <smile>

All in all I have been (and still am) treated extremely well by all

concerned at my local hospital

As a matter of interest the urology unit I attend has a specialist

urology nurse as well

The main problem with my consultant is that he has difficulty in ending

the consultation resulting in long delays if you have a afternoon

appointment

Time do change , when I was first diagnosed (Nov 2000) and asked about

Brachy I was told " it is still experimental " now the specialist nurse

was telling last week that they are fighting for funds to start a Brachy

unit <smile>

> No doubt Pat at Angel Walk will be very interested - tjhough I think she has

> an idea already what the problems are!

>

Who is Pat and what is Angel Walk ?

>

--

http://www.prostatecanceruk.org

[Guest guest]

and others

Thanks for more useful comments.

To answer 's question:-

Pat is one of the Prostate Cancer Charity support nurses (based at HQ in Angel Walk, Hammersmith, London) who is also on our e-group and occasionally contributes - a good few of us are networkers for the Charity and/or involved with local support groups.

PS A thought struck me this week that we may be doing a dis-service to members of this group by making the main theme living with the Prostate Cancer and the emotions - now we are called Prostate Cancer Support could we also be open to the full range of discussions on treatment types as well - with the limitation that no one is in the position to tell anyone what to do - only to give information in there experience and knowledge about alternatives.

-----Original Message-----From: derekls@... Sent: 30 December 2002 18:15To: ProstateCancerSupport Subject: Re: Information from specialists and consultantsHi > This is proving to be an excellent thread bringing out the variation across> the country.It sure is <smile> and it is extremely interesting> > When I was diagnosed I was offered consultation with both urologist and> oncologist - they both initially told me of the benefits of their treatment> and the disbenefits of the other - but it was the oncologist who said that> as I had soreness and inflammation of the urinary system he advised that> Brachytherapy would create problems. All in all looking back on a difficult> time I had a fairer crack of the whip at York than it seems we have> elsewhere!> York, home of Brachy in the UK <smile>My consultant also referred to a oncologist, slight snag though, he was aoncologist also specialised in radiotherapy <smile> All in all I have been (and still am) treated extremely well by allconcerned at my local hospital As a matter of interest the urology unit I attend has a specialisturology nurse as wellThe main problem with my consultant is that he has difficulty in endingthe consultation resulting in long delays if you have a afternoonappointmentTime do change , when I was first diagnosed (Nov 2000) and asked aboutBrachy I was told " it is still experimental" now the specialist nursewas telling last week that they are fighting for funds to start a Brachyunit <smile>> No doubt Pat at Angel Walk will be very interested - tjhough I think she has> an idea already what the problems are!> Who is Pat and what is Angel Walk ?> -- http://www.prostatecanceruk.org

[Guest guest]

My experience at Oxford was similar to others in that brachytherapy

was not mentioned when I was diagnosed in May 1998 at the age of 55.

However, my son was a medical student at the time and gave me lots of

journal articles, mostly American, on various treatment options, including

brachytherapy.

When I mentioned it to the consultant I was told that it might be a viable

option but was only available at the Cookridge Hospital in Leeds.

Nevertheless, after months of research and all the various tests I did think

it would be the best option for me so I had it done at Cookridge in Feb 1999.

So far it seems to have been a success.

Tim

tgpett@...

[Guest guest]

Is publicity about support groups a priority when newly diagnosed?

,

Very few newly diagnosed men in my local hospital are told that there is a support group. Information is the very last thing they want the newly diagnosed to have.

In their eyes a little knowledge is a dangerous thing.

[Guest guest]

I wondered if you've used the cancer information room at the hospital at any

time since diagnosis and how you might see this fitting in generally. (The

questions could equally apply to others in different places as well) eg What do

you think should be the main focus of the info provided - and is that being met?

What might be improved regarding info - are there any obvious gaps? Is

publicity about support groups a priority when newly diagnosed? Plus any other

comments from your experience(s)....

Happy New Year to everyone!

On Mon, 30 Dec 2002 12:26:56 -0000 " Metcalf "

wrote:

This is proving to be an excellent thread bringing out the variation across the country.

When I was diagnosed I was offered consultation with both urologist and oncologist - they both initially told me of the benefits of their treatment and the disbenefits of the other - but it was the oncologist who said that as I had soreness and inflammation of the urinary system he advised that Brachytherapy would create problems. All in all looking back on a difficult time I had a fairer crack of the whip at York than it seems we have elsewhere!

No doubt Pat at Angel Walk will be very interested - tjhough I think she has an idea already what the problems are!

[Guest guest]

Dianne

Initial reply

Yes they loaned me a video so I have used them. Living out of York and seeing the consultant in selby I don't get in to the District Hospital often - next time one of is in it would be useful to check what info they have. We can supplement as necessary.

I think the other questions need a considered reply - will get back to you!