Re: Comparisons of outcomes

[Guest guest]

> Terry Herbert wrote:

>

> There has been a somewhat wide ranging discussion over the

> past few days on the PPML site under a number of headers which

> started when a poster asked if there was a comparison in QOL

> (Quality of Life) outcomes between PBT (Proton Beam Therapy)

> and RALP (Robotic Assisted Laparoscopic Surgery). There is no

> such comparison and a number of posters reject PBT on those

> grounds.

....

I found the most helpful information to be studies of the

incidence of various side effects of treatments, rather than

comparisons of the much vaguer term " quality of life " .

For example, there are studies that show the percentage of men

who get urinary incontinence, urinary blockage, erectile

dysfunction, Peyronie's Disease, bowel damage, etc.

In general, my impression has been that incontinence is

significantly higher with surgery, ED is about the same with

surgery and radiation, damage to the rectum and urinary blockage

are higher with radiation, etc.

These observations help a patient to choose his poison, though

it's still a crap shoot since even those side effects with a low

incidence for a given treatment can still occur.

That is of some help in trying to choose a treatment, but I think

an even more important factor is the skill, experience and

commitment of the doctor. Some surgeons do dramatically better

than others on both cancer control and side effects, and I

believe the same is true among radiation oncologists.

Personally, I do think that the kind of anecdotal stories

available on YANA are valuable. The trick is to understand their

value and not be mislead by them. The wrong way to use them is

to focus on a story that came out just the way you wanted it to

come out and then opt for the same treatment, or to read a horror

story and run away from that treatment. The right way to use

them is to see them as examples of the range of outcomes that can

occur, thus giving yourself a more realistic appreciation of what

can happen. For that, they can be priceless. When a man sees

what actually happens to men who undergo surgery or radiation he

is better prepared to face the treatment himself and more

realistic about what will happen to him.

> I have always failed to be impressed by any argument against

> any specific form of treatment (or even non-treatment) purely

> in the grounds that there are no conclusive well-controlled or

> randomized studies that demonstrate the outcomes, whether we

> are talking about long term survival or side effects. My

> reason for this is a simple one – there are, to the best of my

> knowledge, NO conclusive well-controlled or randomized studies

> that provide these comparisons for ANY of the treatments (or

> non-treatments). To reject one form of therapy on these grounds

> ALONE, seems to me to be illogical and better grounds for

> rejection need to be developed to be convincing.

I have to agree.

However, I'll add a caveat. Some patients get carried away by a

sales pitch, to the point of believing that one form of treatment

is vastly superior to all others. In recent memory, the two such

treatments that got oversold (IMHO) are proton beam and robotic

surgery. In the past, I seem to recall cryosurgery was being

oversold and, at one time, perhaps also IMRT or HDR

brachytherapy. The lack of controlled studies should give us

pause about sales pitches. There is no evidence, to the best of

my knowledge, that indicates any one of these treatments is

vastly superior to the others. And without such evidence, I'm

not prepared to believe it.

Arguments can be made that proton beams deliver a smaller

proportion of the radiant energy to non-target areas than other

types of beam radiation. Brachytherapy proponents argue that NO

energy is delivered outside the target area. Robotic surgeons

argue that the mechanism allows them to make more precise

movements. Cryosurgeons have argued that they can just kill the

cancer with " focal " therapy and leave non-cancerous parts of the

prostate alone.

These are all interesting arguments, but without controlled

studies we can't know how they work out against each other or

what their actual effect on cancer control and side effects

really are.

Buyers must beware.

....

> But at the end of the day, no matter what conclusion a man

> comes to, based on what he has learned, whether this is from

> anecdotal evidence – the stories of his predecessors – or from

> studies no matter if they are regarded as flawed, he still has

> to find a qualified medical doctor to carry out the procedure

> he has chosen.

....

Absolutely.

Alan

[Guest guest]

This is a great recap! THANKS...I did the external radiation with the proton..and would do it again. > > There has been a somewhat wide ranging discussion over the> past few days on the PPML site under a number of headers which> started when a poster asked if there was a comparison in QOL> (Quality of Life) outcomes between PBT (Proton Beam Therapy)> and RALP (Robotic Assisted Laparoscopic Surgery). There is no> such comparison and a number of posters reject PBT on those> grounds....I found the most helpful information to be studies of theincidence of various side effects of treatments, rather thancomparisons of the much vaguer term "quality of life".For example, there are studies that show the percentage of menwho get urinary incontinence,

urinary blockage, erectiledysfunction, Peyronie's Disease, bowel damage, etc.In general, my impression has been that incontinence issignificantly higher with surgery, ED is about the same withsurgery and radiation, damage to the rectum and urinary blockageare higher with radiation, etc.These observations help a patient to choose his poison, thoughit's still a crap shoot since even those side effects with a lowincidence for a given treatment can still occur.That is of some help in trying to choose a treatment, but I thinkan even more important factor is the skill, experience andcommitment of the doctor. Some surgeons do dramatically betterthan others on both cancer control and side effects, and Ibelieve the same is true among radiation oncologists.Personally, I do think that the kind of anecdotal storiesavailable on YANA are valuable. The trick is to understand theirvalue and

not be mislead by them. The wrong way to use them isto focus on a story that came out just the way you wanted it tocome out and then opt for the same treatment, or to read a horrorstory and run away from that treatment. The right way to usethem is to see them as examples of the range of outcomes that canoccur, thus giving yourself a more realistic appreciation of whatcan happen. For that, they can be priceless. When a man seeswhat actually happens to men who undergo surgery or radiation heis better prepared to face the treatment himself and morerealistic about what will happen to him.> I have always failed to be impressed by any argument against> any specific form of treatment (or even non-treatment) purely> in the grounds that there are no conclusive well-controlled or> randomized studies that demonstrate the outcomes, whether we> are talking about long term survival or side

effects. My> reason for this is a simple one – there are, to the best of my> knowledge, NO conclusive well-controlled or randomized studies> that provide these comparisons for ANY of the treatments (or> non-treatments). To reject one form of therapy on these grounds> ALONE, seems to me to be illogical and better grounds for> rejection need to be developed to be convincing.I have to agree.However, I'll add a caveat. Some patients get carried away by asales pitch, to the point of believing that one form of treatmentis vastly superior to all others. In recent memory, the two suchtreatments that got oversold (IMHO) are proton beam and roboticsurgery. In the past, I seem to recall cryosurgery was beingoversold and, at one time, perhaps also IMRT or HDRbrachytherapy. The lack of controlled studies should give uspause about sales pitches. There is no evidence, to the best

ofmy knowledge, that indicates any one of these treatments isvastly superior to the others. And without such evidence, I'mnot prepared to believe it.Arguments can be made that proton beams deliver a smallerproportion of the radiant energy to non-target areas than othertypes of beam radiation. Brachytherapy proponents argue that NOenergy is delivered outside the target area. Robotic surgeonsargue that the mechanism allows them to make more precisemovements. Cryosurgeons have argued that they can just kill thecancer with "focal" therapy and leave non-cancerous parts of theprostate alone.These are all interesting arguments, but without controlledstudies we can't know how they work out against each other orwhat their actual effect on cancer control and side effectsreally are.Buyers must beware....> But at the end of the day, no matter what conclusion a man>

comes to, based on what he has learned, whether this is from> anecdotal evidence – the stories of his predecessors – or from> studies no matter if they are regarded as flawed, he still has> to find a qualified medical doctor to carry out the procedure> he has chosen....Absolutely.Alan

[Guest guest]

There are about 200,000 men diagnosed with prostate cancer each year in the US.

If a standardized reporting form could be developed, this would provide

retrospective data for efficacy and side effects. In 10 years, there would be 2

million records. Even if only 50% of the data were collected, this would be

valuable. Of course there is the potential for bias but this is true for

randomized clinical trials as well. Moreover, there's no way that an equivalent

clinical trial could ever be conducted.

>

>....

>

> Dr Gerry Chodak made the point during the discussion that there are studies

> on quality of life issues. It seems that these are not randomized

> prospective studies but retrospective studies. If that is the case, then

> their value is diminished - many people reject such studies as being likely

> to be biased. This is often especially true if such studies do not support

> their point of view. There is, perhaps more acceptance when retrospective

> studies confirm their views.

>

>....

>

> All the best

>

> Prostate men need enlightening, not frightening

>

> Terry Herbert - diagnosed in 1996 and still going strong

>

> Read A Strange Place for unbiased information at

> http://www.yananow.net/StrangePlace/index.html

>

[Guest guest]

>

> There are about 200,000 men diagnosed with prostate cancer each year in the

US. If a standardized reporting form could be developed, this would provide

retrospective data for efficacy and side effects.

Sure seems like with the billions spent on cancer research over the years that a

standard questionaire could be developed for several stages of PCa treatment.

I'd sure like to see some results myself. I'm pretty satisfied with my primary

treatment, but as I get into next phase, at some point, I'd like to know what

I'm in for.

[Guest guest]

Actually it is surprising that something

like this hasn’t been done for ALL cancers. I would imagine that even

though it sounds simple it would actually be a logistical nightmare to keep

current. I think the yanna site is the best option but sometimes find the

information you want can be time consuming. Also don’t forget that for

each treatment selection there was a person weighing many options before they

decided what they were going to do. A standardized for may not weigh in those

options. I can think of two different paths that men may take. Some want to

extend their life at all costs and are willing to endure many side effects

while others will make decisions to minimize some or all side effects, even if

it may shorten their life. Then there are the many roads in between. I also

know in my case I was pretty adamant about preventing certain side effects at

any costs. Then because of the aggressiveness of my cancer I learn that some

of the side effects weren’t as bad as I thought and I could live with

them causing treatment decisions early on to be based on one criteria while

treatments latter on were based on a different set.

>

> There are about 200,000 men diagnosed with prostate cancer each year in

the US.

If a standardized reporting form could be developed, this would provide

retrospective data for efficacy and side effects.

Sure seems like with the billions spent on cancer research over the years that

a standard questionaire could be developed for several stages of PCa treatment.

I'd sure like to see some results myself. I'm pretty satisfied with my primary

treatment, but as I get into next phase, at some point, I'd like to know what

I'm in for.

[Guest guest]

jkrouwer wrote:

> There are about 200,000 men diagnosed with prostate cancer each

> year in the US. If a standardized reporting form could be

> developed, this would provide retrospective data for efficacy

> and side effects. In 10 years, there would be 2 million

> records. Even if only 50% of the data were collected, this

> would be valuable. Of course there is the potential for bias

> but this is true for randomized clinical trials as well.

> Moreover, there's no way that an equivalent clinical trial

> could ever be conducted.

There is a standardized questionnaire that a lot of doctors use

and that is used in many studies of " health related quality of

life " . See:

http://roadrunner.cancer.med.umich.edu/epic/epicmain.html

I was in a clinical trial at the National Cancer Institute and

every year when I go back for followup they give me the

questionnaire to fill out.

As with all questionnaires, I found some of the questions

difficult to interpret or answer, but I'm not sure it's possible

to create something that is readily understandable and

consistently interpretable by everyone.

Alan

[Guest guest]

Good to know. Questionnaire is step 1. Step 2 is getting it more widely used.

>

> > There are about 200,000 men diagnosed with prostate cancer each

> > year in the US. If a standardized reporting form could be

> > developed, this would provide retrospective data for efficacy

> > and side effects. In 10 years, there would be 2 million

> > records. Even if only 50% of the data were collected, this

> > would be valuable. Of course there is the potential for bias

> > but this is true for randomized clinical trials as well.

> > Moreover, there's no way that an equivalent clinical trial

> > could ever be conducted.

>

> There is a standardized questionnaire that a lot of doctors use

> and that is used in many studies of " health related quality of

> life " . See:

>

> http://roadrunner.cancer.med.umich.edu/epic/epicmain.html

>

> I was in a clinical trial at the National Cancer Institute and

> every year when I go back for followup they give me the

> questionnaire to fill out.

>

> As with all questionnaires, I found some of the questions

> difficult to interpret or answer, but I'm not sure it's possible

> to create something that is readily understandable and

> consistently interpretable by everyone.

>

> Alan

>

[Guest guest]

Lest I sound cynical, remember that medicine is a business. The bottom line of a

business is profit generated by revenue volume less costs. There are a number of

profit incentives out there in the various modalities that would/may not benefit

from a bottom line comparison so they could be very reluctant to take the risk

of hard-evidenced based comparisons.

Rich L

Green Bay, WI

> >

> > There are about 200,000 men diagnosed with prostate cancer each year in

> the US. If a standardized reporting form could be developed, this would

> provide retrospective data for efficacy and side effects.

>

> Sure seems like with the billions spent on cancer research over the years

> that a standard questionaire could be developed for several stages of PCa

> treatment. I'd sure like to see some results myself. I'm pretty satisfied

> with my primary treatment, but as I get into next phase, at some point, I'd

> like to know what I'm in for.

>

[Guest guest]

True, but with 1.1 billion in funding for comparative effectiveness research,

one could hope for a study to be conducted.

> > >

> > > There are about 200,000 men diagnosed with prostate cancer each year in

> > the US. If a standardized reporting form could be developed, this would

> > provide retrospective data for efficacy and side effects.

> >

> > Sure seems like with the billions spent on cancer research over the years

> > that a standard questionaire could be developed for several stages of PCa

> > treatment. I'd sure like to see some results myself. I'm pretty satisfied

> > with my primary treatment, but as I get into next phase, at some point, I'd

> > like to know what I'm in for.

> >

>