Yana Updates

[Guest guest]

Thought you might be

interested that there are over 780 stories on site now, most of them ‘live’

with updates within the last 18 months. Last time I checked, the relevant

numbers were:

RALP (Robotic Assisted

Laparoscopic Surgery)- 249 (33%)

Surgery – 184 (24%)

ADT (Androgen

Deprivation Therapy) – 90 (12%)

EBRT (External Beam Radiation Treatment)

- 57 (8%)

Active Surveillance - 54 (7%)

Proton Beam – 48 –

(6%)

Brachytherapy - 37 –

(5%)

HIFU (17) – (2%)

Undecided – 16 (2%)

Cryotherapy - 5 (1%)

Not too many entries

this week. I have a feeling that there was something amiss on the Internet

generally over the past 10 days because mail was down all around, so if anyone

sent in an update or story and it hasn’t been uploaded yet, please re-send

because that would mean I didn’t receive it

NEW POSTS:

http://www.yananow.net/Mentors/SixG.htm

SIX GLEASON - after getting close to HIFU

decided Active Surveillance was a better choice

http://www.yananow.net/Mentors/BB.htm

B BUTLER newly diagnosed and undecided

UPDATES

http://www.yananow.net/Mentors/M2.htm

PAUL M - update 4 months after RALP (Robotic

Assisted Laparoscopic Prostatectomy) – very little leakage, ED recovering

with Cialis

http://www.yananow.net/Mentors/TomJ.htm

TOM JOHNSON – Gold 3 star member reports on his post

chemo results – PSA still falling after 9 months

http://www.yananow.net/Mentors/W2.htm

PETER WENZ diagnosed in March 2007 and chose HIFU in Germany

http://www.yananow.net/Mentors/TimG.htm

TIM GODFREY – reports on the early days after his Surgery in Cape Town, South

Africa

http://www.yananow.net/Mentors/JoeT.htm

JOE TILLSON - 4.5 months out from RALP (Robotic Assisted Laparoscopic

Prostatectomy) no incontinence but ED issues

http://www.yananow.net/Mentors/BillP.htm

BILL PERRILL - four years after Proton Beam and the only side

effect was radiation proctitis after two years, since dealt with

http://www.yananow.net/Mentors/TomT.htm

TOM THOMAS - a wanderer returns after a last update in April 2007

– still some Ed problems 3 years after RALP (Robotic Assisted

Laparoscopic Prostatectomy)

http://www.yananow.net/Mentors/BillT.htm

BILL T - all’s well two years after his Surgery

http://www.yananow.net/Mentors/LesB.htm

LES BAKER a rising PSA has convinced him to have Surgery after going the

Active Surveillance route

http://www.yananow.net/Mentors/WolfU.htm

WOLF U chose RALP (Robotic Assisted Laparoscopic Prostatectomy) and

is doing fine

http://www.yananow.net/Mentors/D.htm

MICHAEL DRUMMOND chose Brachytherapy and says it was no problem

All the best

Terry Herbert

I have no medical qualifications but I was diagnosed

in ‘96: and have learned a bit since then.

My sites are at www.yananow.net

and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a

physician, I am painfully aware that most of the decisions we make with regard

to prostate cancer are made with inadequate data "

[Guest guest]

Tom Lauterback wrote:

> I do have one question. Today and tomorrow were to have been my

> last treatments, but I'm in significant pain and thus have

> postponed them until Thursday and Friday, if I get them at all.

> Have members of the group had problems with burning and sharp

> pain in the penis and anus during or after IMRT?

I only had 25 sessions of EBRT together with some brachytherapy.

However I experienced nothing at all like this.

My first thought was that maybe the radiation was mis-aimed or you

moved on the table during radiation. However, even if it was

mis-aimed or if you moved, I don't know if that would fully

account for the pain. After all, people get 44 sessions of IMRT

directly to the prostate but don't get pain in the prostate from

it.

I had a lot of pain in the anus that I attributed to a botched

digital rectal exam. The gorilla urologist stuck his finger in

my rectum, felt for three seconds, yanked it out (sideways it

seemed) and reported there was nothing there. Shortly thereafter

my slender young lady radiation oncologist did a careful DRE and

detected two tumors without hurting me at all - which made me

doubly angry at the gorilla. It was many months before the

hemorrhoids and pain eased up, and the radiation I received

during that period didn't help.

Although I attribute the pain to the DRE, it was not clearly

localized. It felt like a combination of rectal pain and

prostatitis. I suspect that many kinds of pain are like this.

It can be hard to locate the exact source of the pain.

> The various doctors tell me I have/had a urinary tract

> infection, and I've been on three different antibiotic courses.

> I've taken enough hydrocodone (vikodin) to kill a horse, as

> well as belladonna and opium suppositories, overdoses of OTC

> painkillers I probably shouldn't be taking in the first place,

> and I still can't sleep through the night. Perhaps all this is

> normal and I just have to wait for the radiation treatments to

> end and the healing to begin. But, in addition to being

> incontinent, I'm in some pretty brutal pain.

Have you ever had a urinary tract infection before? Radiation

shouldn't cause it though I imagine a catheterization could.

I'm pretty sure that what you're experiencing is not normal. The

problem now is, will more treatment make it better or make it

worse. You've gotten so much treatment already with so little

benefit that maybe a week of rest would be better than trying yet

more. I guess a lot depends on whether the problem is getting

worse or not. If it's continuing to get worse, then maybe you've

got to escalate things - terrible as that seems.

How much confidence do you have in your doctors? Do they seem to

care about this problem? If they somehow caused it, do you think

they're the kinds of people who would take responsibility and try

to help, or might they try to BS their way out of any

responsibility, even to the point of refusing to look for causes

that might implicate their treatment?

If your confidence in the docs is waning, is there an

alternative?

> Any great thoughts? And does anyone have an opinion on stopping

> at 42 treatments as opposed to the prescribed 44?

Radiation oncology is such a high tech science that I'm reluctant

to even venture a speculation, much less a " great thought " on

what you should do. You really need expert advice.

Ask the rad onc for an opinion on this. Ask how many grays

you've already gotten and how much more was in the treatment

plan. Ask what would happen if you stop treatment now and come

in in a week, or two weeks, or a month, or never, for the rest.

> I have no brachy, chemo or any other treatment planned or

> contemplated. I was a 5.7 PSA, T1, 25% of one of 12 samples

> malignant. And I'll avoid self-catheterization, which is what

> my uro wants me to do, at all costs. I still believe that's

> what caused my incontinence in the first place.

Your cancer is very low risk, low grade. Ask the rad onc if that

is a factor in deciding whether to quit now.

> But, as Dennis says, I could be wrong.

As could I and, more importantly, as could your doctors.

Alan

[Guest guest]

Hello: I was 70 when diagnosed, (3+3), and opted to have RALP for the reason my urologist was 99% sure that it was confined and he would get it all. The other options sounded like "a real pain in the ass" (lol) to me.

Well, that was 3 years ago on 9/11, (I'm not superstitious) and I still have leakage problems. My urologist said it's rather unusual, but it appears to be getting better. Meanwhile my PSA's have been undetectable since the surgery, so evidently the operation was successful. I have two fellow workers undergoing the Radiation and Hormones and both have been very uncomfortable. But their Cancers had spread beyond the Prostate.

I guess I am lucky, in that I'm leading a normal healthy life as of now.

Steve

Seminole, Fl.

[Guest guest]

Thanks, Alan, for your thoughtful response. About the ONLY thing

I can't blame for my pain is the devilish digit (DRE); haven't had one for a

while.

I understand the possibility of mis-aiming, and, of course, I

could have had a muscle cramp causing me to move a bit. But I don't think so,

and it seems to me those would have resulted in damage centimeters away from

the prostate, not to the head of the penis or the anus. When I urinate, it

seems as if the urine is about the temperature of molten lead.

I'm not aware of previous urinary tract infections, although

there's always that possibility. What strikes me as strange is that I had BPH

symptoms for many years, long before I had my first PSA and certainly long before

my biopsy. I probably didn't have PCa during much of that time, since I have

such a " light " case now, if there is such a thing.

So, who do I trust and how much? I've said it before; I feel

like a hot potato. If you take my uro, my internist and my radiological

oncologist, it seems each one wants someone else to manage the situation. Just

taking pain as an example, my internist doesn't want to continue re-prescribing

hydrocodone, and I understand that. I sure as hell don't want to get addicted

to anything, which is why the opium suppositories scare me also. But no one

seems willing or able to control the situation. Of course, I know ultimately

that it is I who must control it, but that's an MS after my name, not an MD.

So, I'm not sure whom to trust. A complicating factor is that I'm on my third

urologist, having summarily fired the first two. He's only seen me once, so

we're not exactly longtime bosom buddies. He doesn't want to see me until

mid-December when the swelling from the radiation should have gone down. But

both my other docs insist I see him immediately.

I'll check on the grays when I see the oncologist Thursday. Does

38 per treatment X 44 treatments sound right? I could be way off here; I have

nothing in writing that spells out the plan. But, meanwhile, the pain is not diminishing

and the incontinence doesn't exactly enhance quality of life.

Thanks again, Alan.

Tom Lauterback

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer

Sent: Monday, November 16, 2009 9:55 AM

To: ProstateCancerSupport

Subject: Re: Yana Updates

Tom Lauterback

wrote:

> I do have one question. Today and tomorrow were to have been my

> last treatments, but I'm in significant pain and thus have

> postponed them until Thursday and Friday, if I get them at all.

> Have members of the group had problems with burning and sharp

> pain in the penis and anus during or after IMRT?

I only had 25 sessions of EBRT together with some brachytherapy.

However I experienced nothing at all like this.

My first thought was that maybe the radiation was mis-aimed or you

moved on the table during radiation. However, even if it was

mis-aimed or if you moved, I don't know if that would fully

account for the pain. After all, people get 44 sessions of IMRT

directly to the prostate but don't get pain in the prostate from

it.

I had a lot of pain in the anus that I attributed to a botched

digital rectal exam. The gorilla urologist stuck his finger in

my rectum, felt for three seconds, yanked it out (sideways it

seemed) and reported there was nothing there. Shortly thereafter

my slender young lady radiation oncologist did a careful DRE and

detected two tumors without hurting me at all - which made me

doubly angry at the gorilla. It was many months before the

hemorrhoids and pain eased up, and the radiation I received

during that period didn't help.

Although I attribute the pain to the DRE, it was not clearly

localized. It felt like a combination of rectal pain and

prostatitis. I suspect that many kinds of pain are like this.

It can be hard to locate the exact source of the pain.

> The various doctors tell me I have/had a urinary tract

> infection, and I've been on three different antibiotic courses.

> I've taken enough hydrocodone (vikodin) to kill a horse, as

> well as belladonna and opium suppositories, overdoses of OTC

> painkillers I probably shouldn't be taking in the first place,

> and I still can't sleep through the night. Perhaps all this is

> normal and I just have to wait for the radiation treatments to

> end and the healing to begin. But, in addition to being

> incontinent, I'm in some pretty brutal pain.

Have you ever had a urinary tract infection before? Radiation

shouldn't cause it though I imagine a catheterization could.

I'm pretty sure that what you're experiencing is not normal. The

problem now is, will more treatment make it better or make it

worse. You've gotten so much treatment already with so little

benefit that maybe a week of rest would be better than trying yet

more. I guess a lot depends on whether the problem is getting

worse or not. If it's continuing to get worse, then maybe you've

got to escalate things - terrible as that seems.

How much confidence do you have in your doctors? Do they seem to

care about this problem? If they somehow caused it, do you think

they're the kinds of people who would take responsibility and try

to help, or might they try to BS their way out of any

responsibility, even to the point of refusing to look for causes

that might implicate their treatment?

If your confidence in the docs is waning, is there an

alternative?

> Any great thoughts? And does anyone have an opinion on stopping

> at 42 treatments as opposed to the prescribed 44?

Radiation oncology is such a high tech science that I'm reluctant

to even venture a speculation, much less a " great thought " on

what you should do. You really need expert advice.

Ask the rad onc for an opinion on this. Ask how many grays

you've already gotten and how much more was in the treatment

plan. Ask what would happen if you stop treatment now and come

in in a week, or two weeks, or a month, or never, for the rest.

> I have no brachy, chemo or any other treatment planned or

> contemplated. I was a 5.7 PSA, T1, 25% of one of 12 samples

> malignant. And I'll avoid self-catheterization, which is what

> my uro wants me to do, at all costs. I still believe that's

> what caused my incontinence in the first place.

Your cancer is very low risk, low grade. Ask the rad onc if that

is a factor in deciding whether to quit now.

> But, as Dennis says, I could be wrong.

As could I and, more importantly, as could your doctors.

Alan

[Guest guest]

Hi Tom,

I think the pain you are discribing sounds pretty unusual to me. I think you should ask your Docs again. I didn't have any penile pain at any point during or after my TX, though I did have a couple of days when my urine felt very acidic and while stinging it didn't give any sensation that felt it was in the penis, and I only had mild anal discomfort due to constipation, and then only at the time of going to the toilet. I did have a couple of days of a dull ache abdominally about 3 weeks after TX finished but nothing that lasted the night or kept me awake. (By the time my consult came round I had forgotten about it so never got to raise it with the Onco).The penile pain you are discribing does sound like a UT infection (tho I'm no medic), if antibiotics aren't working you could ask your docs if it could be fungal/yeast related - I think anti fungal (thrush) meds are different to anti bacterials. I'm sure the radiation is capable of upsetting all sorts of biological balances within us and this could have enabled a fungal infection to gain the upper hand.

I had 40 treatment sessions and 40 was what was planned in the beginning. My Onco did say that they frequently cut that down to 38 sessions if a patient is having bad side effects. Modern radiation plans give a total of 80 to 82Gy and in the past the max was usually 70Gy so I think there is a little bit of leeway now which wasn't there before. I had a couple of missed sessions during my TX course giving a max interval between sessions of 3 days, the missed 2 days were tagged onto the end of the course.

Malaga,Spain

RE: Yana Updates

Terry:

I may wish to take at least a bit of exception with your assumption about PC/Mac penetration in the over-70 set. I'll look for some good numbers, but I have two things going for me:

I'm the former spokesperson for the U.S. consumer electronics industry, so I've spent some number of years studying technology penetration.

Also, I live in a 55+ community, and I know there are plenty of 70-plussers here who wouldn't start the day w/o PC time. Many could run digital circles around me, I'm sure.

I don't wish to argue the point, or any point for that matter, but you might be surprised by the level of sophistication of some of our PCa brethren. Of course, that doesn't invalidate your point one iota. Chances are, the older the person is, the less exposed he is to the 'net. I'm 64 and I chose external beam radiation after a careful consideration and hours of research re: every tool for PCa cures. Of course, I was also exposed to more than my share of new age mysticism, diet fads and downright hogwash in the process. But I wouldn't have traded a moment of my research time in terms of making the best possible choice for me.

I do have one question. Today and tomorrow were to have been my last treatments, but I'm in significant pain and thus have postponed them until Thursday and Friday, if I get them at all. Have members of the group had problems with burning and sharp pain in the penis and anus during or after IMRT? The various doctors tell me I have/had a urinary tract infection, and I've been on three different antibiotic courses. I've taken enough hydrocodone (vikodin) to kill a horse, as well as belladonna and opium suppositories, overdoses of OTC painkillers I probably shouldn't be taking in the first place, and I still can't sleep through the night. Perhaps all this is normal and I just have to wait for the radiation treatments to end and the healing to begin. But, in addition to being incontinent, I'm in some pretty brutal pain.

Any great thoughts? And does anyone have an opinion on stopping at 42 treatments as opposed to the prescribed 44? I have no brachy, chemo or any other treatment planned or contemplated. I was a 5.7 PSA, T1, 25% of one of 12 samples malignant. And I'll avoid self-catheterization, which is what my uro wants me to do, at all costs. I still believe that's what caused my incontinence in the first place.

But, as Dennis says, I could be wrong.

Tom Lauterback

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry HerbertSent: Monday, November 16, 2009 1:30 AMTo: ProstateCancerSupport Subject: RE: Yana Updates

Alan and all, we can only speculate as to reasons for choices, because all this material is anecdotal and has not been posted as part of a study, but I do get some insight from reading all the stories – and I have read over a thousand submissions to the site, apart from all the material on sites like this.

I think the apparent imbalance between surgery and radiation is primarily due to the age issue. As you know, I think, the median age for diagnosis is in the mid-70s, so at least half the men diagnosed each year are over 70 – and very few 70 year old men have computer capabilities, although their wives might, but even then this is usually limited to e-mails. I haven’t done an analysis by age at diagnosis, but the majority of the men on the site are in their 60s, followed closely by men in their 50s. So the older men are under represented and as the choice of radiation therapies is biased towards the older men – often for health related reasons as they are not in good condition to undergo surgery – there are fewer radiation stories.

There is significant pressure on the ‘younger’ men to have surgery and, as you rightly say, many of the men (and their wives) want to ‘get it out’. RALP (Robotic Assisted Laparoscopic Prostatectomy) has shot up in the charts and, like you, I believe it will become the ‘gold standard’ in a fairly short time, although of course the machines are very expensive, so no doubt there will be many men away from major centres who will have no option but to have the old fashioned open surgery.

It is no surprise to me that Active Surveillance is so far down the list. Although there is a greater support for this option in many parts of the PCa industry, it still requires a great determination to stay on the course in the face of so much pressure to ‘do something’ from doctors, wives, family and subscribers to Lists like these. One of the main reasons that men give for not going the AS route is that they would not be able to take the continuous PSA checks and concerns. There are at lest three studies that show that anxiety amongst AS men is no higher than that amongst men who have had conventional treatment, many of whom simply don’t realize that they will be having PSA checks for the rest of their lives.

The HIFU men are mainly North American residents (some Canadians of course), although some of them have gone to Europe for the treatment.

All the best

Terry Herbert

I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr “Snuffy” Myers : "As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data"

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: Monday, 16 November 2009 4:06 PMTo: ProstateCancerSupport Subject: Re: Yana Updates

Terry Herbert <ghenesh_49optusnet.au> wrote:> Thought you might be interested that there are over 780 stories on site now,> most of them ‘live’ with updates within the last 18 months. Last time I> checked, the relevant numbers were:RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%)Surgery – 184 (24%)ADT (Androgen Deprivation Therapy) – 90 (12%)EBRT (External Beam Radiation Treatment) - 57 (8%)Active Surveillance - 54 (7%)Proton Beam – 48 – (6%)Brachytherapy - 37 – (5%)HIFU (17) – (2%)Undecided – 16 (2%)Cryotherapy - 5 (1%)That is fascinating information. The number of HIFU andcryotherapy patients (3%) is larger than I would have expected,though perhaps the HIFU patients are in Europe, where it is morepopular than elsewhere. The number of radiation patients is lessthan I would have expected, accounting for only 19% total. Thatis in spite of the many recent developments in radiation. TheActive Surveillance group is also smaller than I would haveexpected. Surgery is still the favorite treatment at 57% total. Thegreater popularity of RALP over open surgery is probably new injust the last five years, but it wouldn't surprise me if, fiveyears from now, it's almost all RALP. If nothing else, the hightech appeal is much greater than for open surgery.If we were to ask men why they chose surgery over all othermodalities, I speculate that the number one reason would be, "Iwant it OUT!" I have a cousin who is a medical oncologist whotold me that if he had prostate cancer he'd choose surgery forthat reason. It's a reason that appeals to many men with alldifferent levels of medical knowledge and education. I thinkit's one of the main reasons why active surveillance is lesspopular than we might expect. Most of us have a lot of troublewith the idea that there is cancer inside us and we're not doinganything to get rid of it.I have imagined, and it may only be my imagination, that Internetusers on the whole tend to be younger than those who do not usethe Internet. If that's true, it may be that the above numbersreflect a younger patient population and that including moreolder men would increase the numbers for radiation, activesurveillance, and ADT while decreasing those for surgery.Thank you Terry for crunching the numbers on this and reportingthe results.Alan

[Guest guest]

Thanks, Chris.

" Unusual " is putting it mildly. I'm either the biggest

wimp ever created or something is very wrong. But I didn't understand the

difference between UT infection and fungal/yeast. All I knew about those was

from previous wives and girlfriends. Supposedly the nitrofurantin antibiotic is

the specific treatment for the UT infection I allegedly have. I'll ask re:

fungal/yeast.

Obviously I was way off on the Gy count. The oncologist seemed

perfectly willing to let me truncate the treatment at #40. Now I've had 42, and

he seems to want to do #43 and 44, although I'm sure we'll discuss that before

any treatment on Thursday.

Tom Lauterback

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of elhorizonte

Sent: Monday, November 16, 2009 10:25 AM

To: ProstateCancerSupport

Subject: Re: Yana Updates

Hi

Tom,

I

think the pain you are discribing sounds pretty unusual to me. I think you

should ask your Docs again. I didn't have any penile pain at any point during

or after my TX, though I did have a couple of days when my urine felt very

acidic and while stinging it didn't give any sensation that felt it

was in the penis, and I only had mild anal discomfort due to constipation,

and then only at the time of going to the toilet. I did have a couple of days

of a dull ache abdominally about 3 weeks after TX finished but nothing that

lasted the night or kept me awake. (By the time my consult came round I had

forgotten about it so never got to raise it with the Onco).The penile pain you

are discribing does sound like a UT infection (tho I'm no medic), if

antibiotics aren't working you could ask your docs if it could be fungal/yeast

related - I think anti fungal (thrush) meds are different to anti bacterials.

I'm sure the radiation is capable of upsetting all sorts of biological balances

within us and this could have enabled a fungal infection to gain the upper

hand.

I

had 40 treatment sessions and 40 was what was planned in the beginning. My Onco

did say that they frequently cut that down to 38 sessions if a patient is

having bad side effects. Modern radiation plans give a total of 80 to 82Gy and

in the past the max was usually 70Gy so I think there is a little bit of leeway

now which wasn't there before. I had a couple of missed sessions during my TX

course giving a max interval between sessions of 3 days, the missed 2 days were

tagged onto the end of the course.

Malaga,Spain

-----

Original Message -----

From: Tom Lauterback

To: ProstateCancerSupport

Sent: Monday, November 16,

2009 4:06 PM

Subject: RE:

Yana Updates

Terry:

I may wish to take at least a bit of

exception with your assumption about PC/Mac penetration in the over-70 set.

I'll look for some good numbers, but I have two things going for me:

I'm the former spokesperson for the U.S.

consumer electronics industry, so I've spent some number of years studying

technology penetration.

Also, I live in a 55+ community, and I

know there are plenty of 70-plussers here who wouldn't start the day w/o PC

time. Many could run digital circles around me, I'm sure.

I don't wish to argue the point, or any

point for that matter, but you might be surprised by the level of

sophistication of some of our PCa brethren. Of course, that doesn't invalidate

your point one iota. Chances are, the older the person is, the less exposed he

is to the 'net. I'm 64 and I chose external beam radiation after a careful

consideration and hours of research re: every tool for PCa cures. Of course, I

was also exposed to more than my share of new age mysticism, diet fads and

downright hogwash in the process. But I wouldn't have traded a moment of my

research time in terms of making the best possible choice for me.

I do have one question. Today and tomorrow were to have been

my last treatments, but I'm in significant pain and thus have postponed them

until Thursday and Friday, if I get them at all. Have members of the group had

problems with burning and sharp pain in the penis and anus during or after

IMRT? The various doctors tell me I have/had a urinary tract infection, and

I've been on three different antibiotic courses. I've taken enough hydrocodone

(vikodin) to kill a horse, as well as belladonna and opium suppositories,

overdoses of OTC painkillers I probably shouldn't be taking in the first place,

and I still can't sleep through the night. Perhaps all this is normal and I

just have to wait for the radiation treatments to end and the healing to begin.

But, in addition to being incontinent, I'm in some pretty brutal pain.

Any great thoughts? And does anyone have

an opinion on stopping at 42 treatments as opposed to the prescribed 44? I have

no brachy, chemo or any other treatment planned or contemplated. I was a 5.7

PSA, T1, 25% of one of 12 samples malignant. And I'll avoid self-catheterization,

which is what my uro wants me to do, at all costs. I still believe that's what

caused my incontinence in the first place.

But, as Dennis says, I could be

wrong.

Tom Lauterback

From:

ProstateCancerSupport [mailto:ProstateCancerSupport ]

On Behalf Of Terry Herbert

Sent: Monday, November 16, 2009 1:30 AM

To: ProstateCancerSupport

Subject: RE: Yana Updates

Alan and all, we can only speculate as to

reasons for choices, because all this material is anecdotal and has not been

posted as part of a study, but I do get some insight from reading all the

stories – and I have read over a thousand submissions to the site, apart

from all the material on sites like this.

I think the apparent imbalance between

surgery and radiation is primarily due to the age issue. As you know, I think,

the median age for diagnosis is in the mid-70s, so at least half the men

diagnosed each year are over 70 – and very few 70 year old men have

computer capabilities, although their wives might, but even then this is

usually limited to e-mails. I haven’t done an analysis by age at

diagnosis, but the majority of the men on the site are in their 60s, followed

closely by men in their 50s. So the older men are under represented and as the

choice of radiation therapies is biased towards the older men – often for

health related reasons as they are not in good condition to undergo surgery

– there are fewer radiation stories.

There is significant pressure on the

‘younger’ men to have surgery and, as you rightly say, many of the

men (and their wives) want to ‘get it out’. RALP (Robotic

Assisted Laparoscopic Prostatectomy) has shot up in the charts and, like you, I

believe it will become the ‘gold standard’ in a fairly short time,

although of course the machines are very expensive, so no doubt there will be

many men away from major centres who will have no option but to have the old

fashioned open surgery.

It is no surprise to me that Active

Surveillance is so far down the list. Although there is a greater support for

this option in many parts of the PCa industry, it still requires a great

determination to stay on the course in the face of so much pressure to

‘do something’ from doctors, wives, family and subscribers to Lists

like these. One of the main reasons that men give for not going the AS route is

that they would not be able to take the continuous PSA checks and concerns.

There are at lest three studies that show that anxiety amongst AS men is no

higher than that amongst men who have had conventional treatment, many of whom

simply don’t realize that they will be having PSA checks for the rest of

their lives.

The HIFU men are mainly North American

residents (some Canadians of course), although some of them have gone to Europe

for the treatment.

All the

best

Terry

Herbert

I have

no medical qualifications but I was diagnosed in ‘96: and have learned a

bit since then.

My

sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a physician, I am painfully aware that most of the

decisions we make with regard to prostate cancer are made with inadequate data "

From:

ProstateCancerSupport [mailto:ProstateCancerSupport ]

On Behalf Of Alan Meyer

Sent: Monday, 16 November 2009 4:06 PM

To: ProstateCancerSupport

Subject: Re: Yana Updates

Terry Herbert

wrote:

> Thought you might be interested that there are over 780 stories on site

now,

> most of them ‘live’ with updates within the last 18 months.

Last time I

> checked, the relevant numbers were:

RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%)

Surgery – 184 (24%)

ADT (Androgen Deprivation Therapy) – 90 (12%)

EBRT (External Beam Radiation Treatment) - 57 (8%)

Active Surveillance - 54 (7%)

Proton Beam – 48 – (6%)

Brachytherapy - 37 – (5%)

HIFU (17) – (2%)

Undecided – 16 (2%)

Cryotherapy - 5 (1%)

That is fascinating information. The number of HIFU and

cryotherapy patients (3%) is larger than I would have expected,

though perhaps the HIFU patients are in Europe, where it is more

popular than elsewhere. The number of radiation patients is less

than I would have expected, accounting for only 19% total. That

is in spite of the many recent developments in radiation. The

Active Surveillance group is also smaller than I would have

expected.

Surgery is still the favorite treatment at 57% total. The

greater popularity of RALP over open surgery is probably new in

just the last five years, but it wouldn't surprise me if, five

years from now, it's almost all RALP. If nothing else, the high

tech appeal is much greater than for open surgery.

If we were to ask men why they chose surgery over all other

modalities, I speculate that the number one reason would be, " I

want it OUT! " I have a cousin who is a medical oncologist who

told me that if he had prostate cancer he'd choose surgery for

that reason. It's a reason that appeals to many men with all

different levels of medical knowledge and education. I think

it's one of the main reasons why active surveillance is less

popular than we might expect. Most of us have a lot of trouble

with the idea that there is cancer inside us and we're not doing

anything to get rid of it.

I have imagined, and it may only be my imagination, that Internet

users on the whole tend to be younger than those who do not use

the Internet. If that's true, it may be that the above numbers

reflect a younger patient population and that including more

older men would increase the numbers for radiation, active

surveillance, and ADT while decreasing those for surgery.

Thank you Terry for crunching the numbers on this and reporting

the results.

Alan

[Guest guest]

So Byran,

You can have the lymph or lymphs removed without damaging thenrve. The prostrate Q ana A book that the dr gavementions they could cut a nerve near there and you cannot cross your legs with that leg the lymph node was on.

So it is possible to remove the node? If I can get someone to remove it. I just cannot see leaving and the others there if there isa chance to destry it likemy prostrate. Of course if it has these c cells are they in the node or from somewhere else.

Anyway justpeculation but this juststarted to happen so maybe has not spread otherwise.

Tom W.

To: ProstateCancerSupport Sent: Thu, November 19, 2009 5:20:13 AMSubject: Re: Yana Updates

 Randall

I think I would have found another surgeon. This is the first I have heard of this.

I don't kkow of anyone having RRP that had this happen.

Re: [ProstateCancerSupp ort] Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill

doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him

or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if

Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan

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[Guest guest]



Tom

Randall referred to being crippled for the rest of his life. I have heard of many men who have had RRP and can walk well, I haven't heard of any that can't. There may be some, but I don't know any.

Re: [ProstateCancerSupp ort] Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan

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[Guest guest]

,

Can you put me in contact with those who have and are there statistics about survivability and longevity? What do you know about it?

Thanks,

Tom W.

To: ProstateCancerSupport Sent: Thu, November 19, 2009 6:17:31 PMSubject: Re: Yana Updates

 Tom

Randall referred to being crippled for the rest of his life. I have heard of many men who have had RRP and can walk well, I haven't heard of any that can't. There may be some, but I don't know any.

Re: [ProstateCancerSupp ort] Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill

doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him

or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if

Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan

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[Guest guest]

Tom wrote:

> ,

> Can you put me in contact with those who have and are there

> statistics about survivability and longevity? What do you know

> about it?

>

> > Randall referred to being crippled for the rest of his life.

> > I have heard of many men who have had RRP and can walk well,

> > I haven't heard of any that can't. There may be some, but I

> > don't know any.

Tom,

I'm not exactly sure what you're asking here. If you want to

read personal experiences of men who have had RRP, an excellent

place to start is at http://www.yananow.org, especially at:

http://www.yananow.net/choices.htm#radical

Outcome statistics are harder to determine. There are a great

many studies of the effectiveness and side effects of surgery and

other treatments, but they are done by different researchers at

different institutions using different methods. They often come

to different conclusions.

I think the best thing to do is to search Pubmed, an index of

much of the world's scientific medical literature. It's at

http://www.pubmed.gov.

A good place to start would be to enter a search like:

prostate cancer treatment outcomes

Which (when I just now did it) finds 6978 articles on the

subject. Browse the article titles and click on any that look

interesting to you. It will be heavy going if you've never read

scientific literature, but there is a huge amount of information

there.

Another place to look that has information specifically written

for patients is:

http://www.cancer.gov/cancertopics/pdq/treatment/prostate/patient

For more comprehensive but technical information see:

http://www.cancer.gov/cancertopics/pdq/treatment/prostate/healthprofessional

For whatever it's worth, I have been following prostate cancer

newsgroups for six years and I too have never encountered anyone

crippled by RRP. I did meet one man who had pains in his leg

when standing, possibly from a blood clot, but it was eventually

resolved. I know another who had an embolism that migrated to

his lungs and almost killed him. But he too survived and fully

recovered. Others have had complications of various sorts due to

botched operations or botched radiation. It can happen if the

doctor is incompetent or has a bad day and does something dumb or

klutzy. But I've never heard of any prostate surgery that is

expected in advance to cripple the patient - assuming that

impotence and incontinence don't count as crippling.

I hope that helps.

Alan

[Guest guest]

Allan and Byran and etc.,

I guess the first issue is ;

1. I am not if I am ready to say let us just extend your health and well being and not try to kill the cancer as much as possible

2. If I continue to try to kill it so it will not spread maybe as far and as fast-what will be my quality of life either way and /or will it have any effect on long term time. (It seems the medical proffession basicly has given up on me except for life extension) 3. I will do the rearch on the places you have suggested.

I know no one can say for sure and scientifically maybe that is all they can do. Maybe getting a little acceptance and a pill may help not focus on this and live it out the best I can.

Thanks,

Tom W.

To: ProstateCancerSupport Sent: Thu, November 19, 2009 10:58:05 PMSubject: Re: Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ,> Can you put me in contact with those who have and are there> statistics about survivability and longevity? What do you know> about it?> From: Metcalf <bryan.metcalf@ virgin.net>> > Randall referred to being crippled for the rest of his life.> > I have heard of many men who have had RRP and can walk well,> > I haven't heard of any that can't. There may be some, but I> > don't know any.Tom,I'm not exactly sure what you're asking here. If you want toread personal experiences of men who have had RRP, an excellentplace to start is at http://www.yananow. org, especially at:http://www.yananow. net/choices. htm#radicalOutcome statistics are harder to determine. There are a greatmany studies of the effectiveness and side effects of surgery andother treatments, but they are done by different researchers atdifferent institutions using different methods. They often cometo different conclusions.I think the best thing to do is to search Pubmed, an index ofmuch of the world's scientific medical literature. It's athttp://www.pubmed. gov.A good place to start would be to enter a search like:prostate cancer treatment outcomesWhich (when I just now did it) finds 6978 articles on thesubject. Browse the article

titles and click on any that lookinteresting to you. It will be heavy going if you've never readscientific literature, but there is a huge amount of informationthere.Another place to look that has information specifically writtenfor patients is:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ patientFor more comprehensive but technical information see:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ healthprofession alFor whatever it's worth, I have been following prostate cancernewsgroups for six years and I too have never encountered anyonecrippled by RRP. I did meet one man who had pains in his legwhen standing, possibly from a blood

clot, but it was eventuallyresolved. I know another who had an embolism that migrated tohis lungs and almost killed him. But he too survived and fullyrecovered. Others have had complications of various sorts due tobotched operations or botched radiation. It can happen if thedoctor is incompetent or has a bad day and does something dumb orklutzy. But I've never heard of any prostate surgery that isexpected in advance to cripple the patient - assuming thatimpotence and incontinence don't count as crippling.I hope that helps.Alan

[Guest guest]



Tom at the end of the day the choice is yours, all we ask is that people are infmed enough to make a decision.

Best wishes

Re: Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ,> Can you put me in contact with those who have and are there> statistics about survivability and longevity? What do you know> about it?> From: Metcalf <bryan.metcalf@ virgin.net>> > Randall referred to being crippled for the rest of his life.> > I have heard of many men who have had RRP and can walk well,> > I haven't heard of any that can't. There may be some, but I> > don't know any.Tom,I'm not exactly sure what you're asking here. If you want toread personal experiences of men who have had RRP, an excellentplace to start is at http://www.yananow. org, especially at:http://www.yananow. net/choices. htm#radicalOutcome statistics are harder to determine. There are a greatmany studies of the effectiveness and side effects of surgery andother treatments, but they are done by different researchers atdifferent institutions using different methods. They often cometo different conclusions.I think the best thing to do is to search Pubmed, an index ofmuch of the world's scientific medical literature. It's athttp://www.pubmed. gov.A good place to start would be to enter a search like:prostate cancer treatment outcomesWhich (when I just now did it) finds 6978 articles on thesubject. Browse the article titles and click on any that lookinteresting to you. It will be heavy going if you've never readscientific literature, but there is a huge amount of informationthere.Another place to look that has information specifically writtenfor patients is:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ patientFor more comprehensive but technical information see:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ healthprofession alFor whatever it's worth, I have been following prostate cancernewsgroups for six years and I too have never encountered anyonecrippled by RRP. I did meet one man who had pains in his legwhen standing, possibly from a blood clot, but it was eventuallyresolved. I know another who had an embolism that migrated tohis lungs and almost killed him. But he too survived and fullyrecovered. Others have had complications of various sorts due tobotched operations or botched radiation. It can happen if thedoctor is incompetent or has a bad day and does something dumb orklutzy. But I've never heard of any prostate surgery that isexpected in advance to cripple the patient - assuming thatimpotence and incontinence don't count as crippling.I hope that helps.Alan

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[Guest guest]

Ok Byran,

As soon as my bone scan is done I will carry my over to MD to see if their reccommendations conform to my present doctor and go to the VA to see if their reccomendations are the same as well.

I will try to educate myself as well because I just need to know if I can do something and/ or understand so I deal emotionally better. I have had to deal with some tough stuff in my life but this eating my lunch. I know the stages as well being a former phsyco therapist and educator.

Thanks for your support and info and patience with my ignorance and neediness.

Tom W

To: ProstateCancerSupport Sent: Fri, November 20, 2009 9:09:40 AMSubject: Re: Yana Updates

 Tom at the end of the day the choice is yours, all we ask is that people are infmed enough to make a decision.

Best wishes

Re: [ProstateCancerSupp ort] Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ,> Can you put me in contact with those who have and are there> statistics about survivability and longevity? What do you know> about it?> From: Metcalf <bryan.metcalf@ virgin.net>> > Randall referred to being crippled for the rest of his life.> > I have heard of many men who have had RRP and can walk well,> > I haven't heard of any that can't. There may be some, but I> > don't know any.Tom,I'm not exactly sure what you're asking here. If you want toread personal experiences of men who have had RRP, an excellentplace to start is at http://www.yananow. org, especially at:http://www.yananow. net/choices. htm#radicalOutcome statistics are harder to determine. There are a greatmany studies of the effectiveness and side effects of surgery andother treatments, but they are done by different researchers atdifferent institutions using different methods. They often cometo different conclusions.I think the best thing to do is to search Pubmed, an index ofmuch of the world's scientific medical literature. It's athttp://www.pubmed. gov.A good place to start would be to enter a search like:prostate cancer treatment outcomesWhich (when I just now did it) finds 6978 articles on thesubject. Browse the article

titles and click on any that lookinteresting to you. It will be heavy going if you've never readscientific literature, but there is a huge amount of informationthere.Another place to look that has information specifically writtenfor patients is:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ patientFor more comprehensive but technical information see:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ healthprofession alFor whatever it's worth, I have been following prostate cancernewsgroups for six years and I too have never encountered anyonecrippled by RRP. I did meet one man who had pains in his legwhen standing, possibly from a blood

clot, but it was eventuallyresolved. I know another who had an embolism that migrated tohis lungs and almost killed him. But he too survived and fullyrecovered. Others have had complications of various sorts due tobotched operations or botched radiation. It can happen if thedoctor is incompetent or has a bad day and does something dumb orklutzy. But I've never heard of any prostate surgery that isexpected in advance to cripple the patient - assuming thatimpotence and incontinence don't count as crippling.I hope that helps.Alan

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[Guest guest]

I'm sorry I did not mean to scare any one. or to stop any one from having treatment, When I told you what my uro told me. I don't think he was use to a patient having prostate cancer as long as I have had it.

When I told my doctor he said that the uro had discuss with him the radiation treatment I was going to have to have as well, I'm sure I told the uro that I wanted no radiation treatment.

My doctor said don't worry about the nerves in you penis, he knows an other doctor who can do a nerve graft from nerves in my ankles, and replace the nerve that were removed, that were controling my penis. so I would no longer have a numb dick.

when I ask one of the female doctors where my wife works about this, I was told by her she know nerves run close to the lymph nodes comeing from the penis she have heard of patient who in the cause of there operatrion the surgun has cut by acident cut these nerves but never the nerves taken out she then said a nerve graft can take up to 18 month to get going she also said with a bit of serious look on her face with any graft you will need physio. I dont know what physio I would get. To me, all this was just, to much truble, to much pain, I be puting my self though, and because Im going alright now Ill stick to what Im doing now. all the best Randall

To: ProstateCancerSupport Sent: Sat, 21 November, 2009 1:09:40 AMSubject: Re: Yana Updates

 Tom at the end of the day the choice is yours, all we ask is that people are infmed enough to make a decision.

Best wishes

Re: [ProstateCancerSupp ort] Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ,> Can you put me in contact with those who have and are there> statistics about survivability and longevity? What do you know> about it?> From: Metcalf <bryan.metcalf@ virgin.net>> > Randall referred to being crippled for the rest of his life.> > I have heard of many men who have had RRP and can walk well,> > I haven't heard of any that can't. There may be some, but I> > don't know any.Tom,I'm not exactly sure what you're asking here. If you want toread personal experiences of men who have had RRP, an excellentplace to start is at http://www.yananow. org, especially at:http://www.yananow. net/choices. htm#radicalOutcome statistics are harder to determine. There are a greatmany studies of the effectiveness and side effects of surgery andother treatments, but they are done by different researchers atdifferent institutions using different methods. They often cometo different conclusions.I think the best thing to do is to search Pubmed, an index ofmuch of the world's scientific medical literature. It's athttp://www.pubmed. gov.A good place to start would be to enter a search like:prostate cancer treatment outcomesWhich (when I just now did it) finds 6978 articles on thesubject. Browse the article

titles and click on any that lookinteresting to you. It will be heavy going if you've never readscientific literature, but there is a huge amount of informationthere.Another place to look that has information specifically writtenfor patients is:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ patientFor more comprehensive but technical information see:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ healthprofession alFor whatever it's worth, I have been following prostate cancernewsgroups for six years and I too have never encountered anyonecrippled by RRP. I did meet one man who had pains in his legwhen standing, possibly from a blood

clot, but it was eventuallyresolved. I know another who had an embolism that migrated tohis lungs and almost killed him. But he too survived and fullyrecovered. Others have had complications of various sorts due tobotched operations or botched radiation. It can happen if thedoctor is incompetent or has a bad day and does something dumb orklutzy. But I've never heard of any prostate surgery that isexpected in advance to cripple the patient - assuming thatimpotence and incontinence don't count as crippling.I hope that helps.Alan

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[Guest guest]



Randall

The nerve to the penis is damaged quite often causing rectile disfunction.

I have never heard of damage to the leg nerves.

I am wondering why you don't want radiation, this is given to many men who have a good quality of life afterwards.

Please remind me of your gleason score and PSA at diagnosis

PS we try to avoid colloquial terms for the penis

Re: [ProstateCancerSupp ort] Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ,> Can you put me in contact with those who have and are there> statistics about survivability and longevity? What do you know> about it?> From: Metcalf <bryan.metcalf@ virgin.net>> > Randall referred to being crippled for the rest of his life.> > I have heard of many men who have had RRP and can walk well,> > I haven't heard of any that can't. There may be some, but I> > don't know any.Tom,I'm not exactly sure what you're asking here. If you want toread personal experiences of men who have had RRP, an excellentplace to start is at http://www.yananow. org, especially at:http://www.yananow. net/choices. htm#radicalOutcome statistics are harder to determine. There are a greatmany studies of the effectiveness and side effects of surgery andother treatments, but they are done by different researchers atdifferent institutions using different methods. They often cometo different conclusions.I think the best thing to do is to search Pubmed, an index ofmuch of the world's scientific medical literature. It's athttp://www.pubmed. gov.A good place to start would be to enter a search like:prostate cancer treatment outcomesWhich (when I just now did it) finds 6978 articles on thesubject. Browse the article titles and click on any that lookinteresting to you. It will be heavy going if you've never readscientific literature, but there is a huge amount of informationthere.Another place to look that has information specifically writtenfor patients is:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ patientFor more comprehensive but technical information see:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ healthprofession alFor whatever it's worth, I have been following prostate cancernewsgroups for six years and I too have never encountered anyonecrippled by RRP. I did meet one man who had pains in his legwhen standing, possibly from a blood clot, but it was eventuallyresolved. I know another who had an embolism that migrated tohis lungs and almost killed him. But he too survived and fullyrecovered. Others have had complications of various sorts due tobotched operations or botched radiation. It can happen if thedoctor is incompetent or has a bad day and does something dumb orklutzy. But I've never heard of any prostate surgery that isexpected in advance to cripple the patient - assuming thatimpotence and incontinence don't count as crippling.I hope that helps.Alan

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Gleson score in 2007 was 4+4 = 8. over the last two years, I forgotten on what part of the prostate it was.The thing is that was in 2007 when my PSA was 4. it went up to a PSA of 13,8 a year later. so would my gleason score would be more.? and who is this guy gleasion any way ?.

Why I don't like radiation most of the cells in our body live for about seven years so all of us are only realy seven years old. hi dose Radiation destroyes every cell it comes in contact with low dose radiation change the DNA in cells by cutting right through the DNA chains in all the cells in our body. This is why I don't like radiation. short term radiation works grate at reducing pain and shrinking cancer tumours, but in the long term, these DNA changes cause other more deadly cancer to form later once we had radiation we cant have more it would destroy to much DNA cheers Randall

To: ProstateCancerSupport Sent: Sat, 21 November, 2009 9:10:38 AMSubject: Re: Yana Updates

 Randall

The nerve to the penis is damaged quite often causing rectile disfunction.

I have never heard of damage to the leg nerves.

I am wondering why you don't want radiation, this is given to many men who have a good quality of life afterwards.

Please remind me of your gleason score and PSA at diagnosis

PS we try to avoid colloquial terms for the penis

Re: [ProstateCancerSupp ort] Yana Updates

Tom <tomcw4aaayahoo (DOT) com> wrote:> ,> Can you put me in contact with those who have and are there> statistics about survivability and longevity? What do you know> about it?> From: Metcalf <bryan.metcalf@ virgin.net>> > Randall referred to being crippled for the rest of his life.> > I have heard of many men who have had RRP and can walk well,> > I haven't heard of any that can't. There may be some, but I> > don't know any.Tom,I'm not exactly sure what you're asking here. If you want toread personal experiences of men who have had RRP, an excellentplace to start is at http://www.yananow. org, especially at:http://www.yananow. net/choices. htm#radicalOutcome statistics are harder to determine. There are a greatmany studies of the effectiveness and side effects of surgery andother treatments, but they are done by different researchers atdifferent institutions using different methods. They often cometo different conclusions.I think the best thing to do is to search Pubmed, an index ofmuch of the world's scientific medical literature. It's athttp://www.pubmed. gov.A good place to start would be to enter a search like:prostate cancer treatment outcomesWhich (when I just now did it) finds 6978 articles on thesubject. Browse the article

titles and click on any that lookinteresting to you. It will be heavy going if you've never readscientific literature, but there is a huge amount of informationthere.Another place to look that has information specifically writtenfor patients is:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ patientFor more comprehensive but technical information see:http://www.cancer. gov/cancertopics /pdq/treatment/ prostate/ healthprofession alFor whatever it's worth, I have been following prostate cancernewsgroups for six years and I too have never encountered anyonecrippled by RRP. I did meet one man who had pains in his legwhen standing, possibly from a blood

clot, but it was eventuallyresolved. I know another who had an embolism that migrated tohis lungs and almost killed him. But he too survived and fullyrecovered. Others have had complications of various sorts due tobotched operations or botched radiation. It can happen if thedoctor is incompetent or has a bad day and does something dumb orklutzy. But I've never heard of any prostate surgery that isexpected in advance to cripple the patient - assuming thatimpotence and incontinence don't count as crippling.I hope that helps.Alan

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