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,

Welcome to the list, although I wish you didn't have to be here.

As far as the estrace cream, used the way vv sufferers use it, (a small

amount externally and right in the vestibule) I don' think much is absorbed.

Check with your doctor, but I don't think it would increase your cancer

risk.

Good luck, you'll find a lot of information, and great support, here.

-Kitty

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nugenc-@... wrote:

Oh Beth my heart goes out to you. I will pray for you and your family!

I was diagnosed with syringomyelia at age 19 also. I had never had

a sezuire until after my decompression surgery. Even at that, I began

having what they refferred to as " myoclonic episodes " and some doctors

even called me a head case. - 3 months ago I was hit with one of my

standard sezuires but I went unconscious this time and stopped

braething. I was put on a resperator and and was in ICU for several

days. Now all of a sudden they tell me I have Epilepsy. (no further

explaination given like have I had it all along? Is it new and from

what?) - All I know is I feel my mind changing and I'm scared too. Now

at age 24 I am having all sorts of wierd things happen that are being

chalked up to eplilepsy - i.e. Hallucinations if I don't get enough

sleep, sensory disorders etc.

I will share with you as much as I can if you want. I know what

it's like to hanging out there sick, young, and feeling helpless

because everything you used to know is slowly disappearing. If you have

a question, please always ask! We all care and are here to help and

love each other. These groups and the good Lord are the only

explaination for my tethered sanity anmore.

God Bless!

aka Ouchy

original article:/group/chiari/?start=23151

> Hi everyone, My name is Beth and I am 19 years old and living in Ohio.

> Yesterday I went to the Neurologist and was diagnosed with epilepsy.

He

> offered to show me the MRI's and when he put them up on the lighted

> board saw something else the MRI guy had circled (he hadn't looked at

> them before I got there) and then told me that the epilepsy wasn't my

> only problem, that I had Arnold Chiari. My herniation is 8 mm. I

> freaked out, and the problem is my mom was there with me, and our

> family has been in a state of turmoil for the last 2 weeks, the day I

> went for my seccond MRI (the first was unclear or something) she was

in

> surgery and we found out she has breast cancer. I feel so scared and

> alone, I decided to join this group and see what I could learn about

> this disease. I am adopted and also wonder if I should inform my birth

> mother (I have 2 younger half siblings) Can anyone help me out here?

>

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  • 1 month later...

Colleen,

Have you looked into biofeedback? You may have pelvic floor

problems.

Shirley.

" colinger@... " wrote:

>

>

>

> Hi everyone,

> I'm new to the list, and quite relieved that there is one. I have suffered

> from vulvar vestibulitis for over two years, but have just been diagnosed. I,

> like many others it seems, have suffered through a myriad of doctors,

> treatments, etc., and really don't know where to start. My last doctor, who I

> was with the longest, put me through two surgeries, one laser and one

> scalpel-neither worked. My last visit to him, he handed me a business card for

> a psychiatrist. Needless to say, I'm not seeing him anymore. He tried, but he

> has no further options. Luckily, I have found a doctor who knows about vulvar

> vestibulitis, but wants me to go to a pain management doctor and get a shot

> " down there " so that I can at least be able to enjoy sex while she tries to

> treat me. I have a gut feeling that this isn't a good idea, because how will I

> know anything is helping me, or if it's just the shot? I have read these

> messages from others for a week now, but most of the advice talks about

> vulvodynia. I have pain everytime my husband & I try intercourse, and I've

> never been able to wear a tampon. This leads me to believe that I don't have

> just vulvodynia. By the way, my heart goes out to you who have it-I thought my

> problem was bad until I heard about yours. Please, I am desperate for advice

> on where to start with treatment or what to try first for vulvar vestibulitis.

> This is the hardest thing I have ever gone through(but I have a wonderful

> husband who is my shoulder to cry on).

> Gratefully yours,

> Colleen

>

> >

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Colleen --

Have you tried ANYTHING other than surgeries at this point? If not, for

vulvar vestibulitis, you could be tested for yeast (including non-albicans),

and bacteria, could try using Estrace or some other estrogen cream (this

helped me tremendously when I had very sharp shooting pain, rather than the

burning POC I have now), try a low-oxalate diet (or at least get tested for

oxalates in your urine), possibly try antidepressants, and get tested for

biofeedback. I wouldn't get the shot just yet, b/c as you said, then you

won't know what is and what isn't working. If you want temporary pain

relief, ask your doctor to prescribe you some lidocain or other numbing gel

(note that some of the different numbing gels burn some people, and

completely doesn't work at all for some).

Maybe if you tell us more about your symptoms (like what kind of pain, if

you have discharge, exactly where the pain is, etc) we all could try to be

of more help.....and I just wanted to let you know that you are very lucky

to have a completely supportive husband. You should take great comfort in

that.

-- G.

> New member

>

>

>

> Hi everyone,

> I'm new to the list, and quite relieved that there is one. I have suffered

>

> from vulvar vestibulitis for over two years, but have just been diagnosed.

> I,

> like many others it seems, have suffered through a myriad of doctors,

> treatments, etc., and really don't know where to start. My last doctor,

> who I

> was with the longest, put me through two surgeries, one laser and one

> scalpel-neither worked. My last visit to him, he handed me a business card

> for

> a psychiatrist. Needless to say, I'm not seeing him anymore. He tried, but

> he

> has no further options. Luckily, I have found a doctor who knows about

> vulvar

> vestibulitis, but wants me to go to a pain management doctor and get a

> shot

> " down there " so that I can at least be able to enjoy sex while she tries

> to

> treat me. I have a gut feeling that this isn't a good idea, because how

> will I

> know anything is helping me, or if it's just the shot? I have read these

> messages from others for a week now, but most of the advice talks about

> vulvodynia. I have pain everytime my husband & I try intercourse, and I've

>

> never been able to wear a tampon. This leads me to believe that I don't

> have

> just vulvodynia. By the way, my heart goes out to you who have it-I

> thought my

> problem was bad until I heard about yours. Please, I am desperate for

> advice

> on where to start with treatment or what to try first for vulvar

> vestibulitis.

> This is the hardest thing I have ever gone through(but I have a wonderful

> husband who is my shoulder to cry on).

> Gratefully yours,

> Colleen

>

> >

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  • 1 month later...

, It is good to see you here. There is an incredible amount of

information and support on this list and it is extremely helpful to realize

that we are not the only one suffering with this pain. Warm regards, Donna

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  • 3 weeks later...

Fay, I am sure my I C and VV all started with a back problem although I

didn't have much back pain at the time. It's all interconnected. I went to

a specialist in

I C in L A (I live in Seattle) who made me realize it was back related. If

you want to E Mail me directly I could answer any questions you might have

regarding this.

What is Emulsifying Ointment?

I also took Elavil, about 6 years, didn't help pain but I was only up to 30

mg. You must have been a zombie. The morning after I took the first 10 mg.

I couldn't spell box. (Seriously) I also gained 20 pounds. I am going off

slowly, down to l0 mg. again. Even my Naturopath doesn't want me to go off

suddenly. Sleeping will probably be difficult. The Elavil really makes me

sleep well. Anyway, good luck with whatever you decide to try.

There's an enormous amount of support and information here. Just make sure

you only try one thing at a time and give it some time. My problem and many

others here bounce around trying to find some pain relief and it makes it

difficult to know what helps.My trouble is patience.

Warm regards, Donna

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Thanks , Did she help with your Vulvadynia? My Naturopath gave me a

name of an Acupuncurist in Ballard said she had worked with Vulvar patients

with good response. I have new health insurance and pay almost $300 a month

for it but so far I'm not impressed. Will probably have to pay an

accupuncturist myself unless they are listed. Warm regards, Donna

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  • 1 year later...

Steve...

I know this is late ...but I wanted to welcome you to the group anyways...I have been here for quite awhile....since 99 I think....the group was very small and it was easy to keep up with all the mail....now we are huge and harder to talk to everyone...and there are times I just can't get on here to even read....I am just back from such a time....so that is why this welcome is so late...

I am one of the moms in the group....I am here about my son...who just turned 19.....

I hope I will be able to get to know you better...

Luanne Ty's mom

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  • 2 years later...

Hi Norma,

I was diagnosed with Fibromyalgia in January but I am sure I have had it for

at least 10 years. I have had night sweats and daytime hot flashes all that

time. My Dr. recently checked my hormones and she says they don't show that

I'm going through menopause yet and its probably the Fibro.

in Oregon

>

>Reply-To: Fibromyalgia_Support_Group

>To: Fibromyalgia Support <Fibromyalgia_Support_Group >

>Subject: New member

>Date: Wed, 22 Sep 2004 22:02:33 -0700

>

>Hello everybody,

> My name is Norma . I am married to a wonderful man for 30 years who helps

>me a great deal. I have three grown sons, two dogs and one cat. I was

>diagnosed with Fibro 10 years ago. Since then my symptoms have become

>worse. I also have arthritis which is a double whammy for me. Some days I

>just feel like staying in bed to avoid the pain. However that choice

>doesn't work very well. :) My doctor just prescribed Naproxen and Flexeril

>today. Tomorrow will be either better or worse. I'm hoping for the first.

> My pain sometimes makes me sweat and then I get cold, but I don't have a

>fever. I don't know if this is a symptom of Fibro or not?

> I look forward to meeting all of you and participate as much as

>possible. Gotta go ( My bottom is hurting lol)

>

>Norma

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

hthttp://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

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Welcome! Im fairly new here and also have been recently diagnosed. Im

just starting to get the hang of this thing. So far the people have

been very nice here and I love the sense of humor here since being

humorous myself Ive found it helps get through my pains.

LMarkham

> Hello everyone,

>

> I was diagnosed with Fibromyalgia about a month ago. The more that

> I read about it, the more that I realize that I probably have had

> this illness for many years...but I am just now being diagnosed. I

> am married ..almost 20 years and have 3 children...12-16-18. I am

> still struggling with the fact that I have this illness. I am not

> one to admit to myself or anyone else when I am ill. Fatigue is a

> major problem for me. Everything that I do causes me to be tired.

> Sometimes walking one flight of steps does me in for most of the

> day. I do not sleep well at all and on the rare occasion that I

do,

> I still wake up exhausted. My feet and hands always ache. Some

> days more than others.I feel tender all over most of the time. I

> guess they would be the trigger spots. I am only 39 years old but

> feel like I have the body of a 90 year old person. I am trying to

> gather as much information about this illness as I can so that " I "

> can come to terms that it is an illness and not in my head. If

> someone else, anyone else that I know was diagnosed with this, I

> would not doubt what they were feeling for one moment.

>

> I was diagnosed by a rhumatologist. He put me on 10mg of Elavil.

> It doesn't seem to be doing any good. I know that I need to

> exercise, but I am too tired and it hurts. The last couple of

days,

> my hips have really been giving me problems. I try to walk

whenever

> possible.

>

> Anyway, I am happy to have found this group. I am looking for all

> the information and guidance that I can get here from all of you!

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Welcome Virgil!

It's been a few days sincec being here so I have to catch up on all

the new ones. Hope you can get some answers and enjoy the company and

support!

LMarkham

> Hi All:

>

> I'm new to the group, but have had Fibroyalgia for nearly 14

years. I knew

> that I had it but thought that it would subside given all the meds

I already

> take. I'm 58 years old and have had FMS and CFS since the Gulf

War. I'm

> pretty much in pain most of the time, all over my body. I'm married

and have

> two children, both gone from the home. I work as a Clinical Social

Worker.

> I also have IBS, Ulcerative Colitis, dysthymia, and pretty much all

the

> baggage that comes with the disease. I've been taken Neurontin for

the FMS

> but it over sedates me and I'm unable to drive. I'll see my doctor

> tomorrow, hopefully for Ultram and Flexiril.

>

> Regards,

>

> Virgil

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  • 1 year later...
Guest guest

Hi Jan,

you have come to the right place. We all have more than a few things

in commonn, pain/depression/feeling alone/fighting the system!!!

It's so sad, this should be your " Golden " years. Your time for

raising kids should be over, the only thing they should be coming to

you for should be advice! It sounds like you have worked hard all

these yrs and now when you need someone, you are inviisble.

I too know all about being a co-dependent. Sounds like you know also,

since your hubby was an alcholic. I used to chair meetings and i

still read my " blue book " every day. My dd's father was a drug

addict. You know how hard it is for us to say " NO " and keep it at no.

You are no longer alone, we are here for you. I work 12hr night

shifts and am on the puter all night at work (just can't IM) and when

i get up in the afternoon i check my messages, so if you need

to " talk " i am almost always around.

Once again Welcome Home!

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Guest guest

hi terry..i havent had the surgery,i just found out

recently i have prostate cancer. i am 53,i may do some

watchful waiting and try a macrobiotic diet

first..good luck to you and let me know how u

fare..joe

--- Terry Herbert wrote:

>

>

> eddieh48 ehammond@... says:

>

>

>

> <snip> Recently had radical prostate removal and

> want to see what others

> experince after this surgery. age 55. <snip>

>

> All the best

>

>

>

> Terry Herbert

>

> 1/60 Morna Rd,

>

> DONCASTER EAST VIC 3109,

>

> Australia

>

> Telephone +61 3 9891 6883

>

> Mobile +61 421 097 318

>

> Skype: terryherbert1942

>

>

>

>

__________________________________________________

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Guest guest

Hi ,

Welcome to the group. I'm sure you will find good information here, or at

least lots of experiences with both Fibro and CFS.

Take care,

Caitlin

Gaynor wrote:

Hi! My name is and I just joined last night. I am a 24 yr old

female

from Florida. I was born with spina bifida and have recently been

diagnosed with chronic fatigue and fibromyalgia. I don't know much about

either one so I thought I would join and say hi! I hope to get to know you

all better!

__________________________________________________

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Guest guest

Hi ,

Welcome to our group. I know you will like it here and just join in at any time

and someone will be glad to be of help to you. I personally do not have what

you do, but I can stil relate to the pain thing. I certainly have plenty of

that! Gwen in Kansas

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  • 1 month later...
Guest guest

Hi "tink"

I'm sory but we are going to have to trouble you for more info. Dad seems to have gone through the mill.

The treatment your dada has had is unusual. Surgery is usually only done once and chemo is usually left until later. The normal post surgery treatments are external radiation and hormone manipulation treatment, if deemed necessary.

I'm trying to work out why two operations, is it because there was a regrowth after the first surgery.

Is the reason he is anemic that he has had a chemo that has affected his liver etc.

Sorry for the questions and I understand your concern

Hambleton

Selby

Yorkshire

England

New member

Hi All, I joined here in search of help for my father. I don't know where else to turn. I have just about given up on the doctors where he lives. They have no answers. My Da had prostate surgury twice now. Both times he went thru chemo and seems to be free of cancer. The last time he had the surgery, he had developed bleeding. He tried oxygen treatments and cauterization. They tried to insert formaldhyde and freeze the bleeding but nothing has worked. He is now anemic from the loss of blood and wears depends. I don't know where else to turn. Has anyone gone thru this or heard of this? Any help would be greatly appreciated.

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  • 4 weeks later...

--- " bijou.iluvu " ,

I wasn't diagnosed with thyroid problems until I was in my thirties. I

had neck surgery four times because of my thyroid the first two

surgeries the surgeons were rude. They didn't know what was wrong.

I have to admit I was very rude back at them. My first surgery I

was sixteen. - when he told me I had an attitude , I told the surgeon

where to stick his scalpel.

Gail

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Hi . What kind of medications are you on for RSD? Are you on an

RSD support group too? I have RSD in my left leg which resulted from

a fall down the stairs - my dog got under my legs and we both fell.

He walked away, an ambulance took me to the hospital. And yes, I

still love him! It's hard to be somewhere with no support. Are you

able to have an animal?

Even if you can get a cat, which is low maintenance, it would help you. An

animal can give you unconditional love and will always be there for you. This

group is wonderful. I hope we can all help you.

Tricia

At 02:49 AM 8/28/2006, you wrote:

>Hello,

>My name is , I am a 19 year old female that has had RSD in my

>right leg for six years now, after running on the beach and falling

>in a hole.

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  • 3 weeks later...

One of the questions that any man of 78

should ask is “Do I really need any treatment at all?” The answer

to that isn’t easy to find, and a good deal depends on issues like the

details of his diagnosis and his overall health issues, but the question should

still be considered in appropriate cases.

Although you say that he is considering

radiation treatment, there are in fact many variations on this option. The main

dividing line is between the two main Brachytherapy options and the many EBRT

(External Beam Radiation) choices. The Brachytherapy options are essentially

known as SI (Seed Implants) where small radioactive pellets are lodged

permanently in the gland and HDR (High Dosage Radiation) where pellets with a

higher output are inserted, left for a short time and then withdrawn from the

gland. The EBRT choices are many and varied ranging from Proton Beam through a

variety of procedures with differing acronyms. Some institutions believe in a

combination of Brachytherapy and EBRT – the most well known probably

being Radiation College of Atlanta in Georgia about which another member

enquired earlier today., while some believe that radiation therapy should be

combined with ADT (Androgen Deprivation Therapy), commonly known as hormone

therapy.

So, what your father in law can expect

from radiation therapy will largely depend on what he chooses from this wide

menu. Broadly speaking the main issues with radiation are those that affect all

men who have aggressive treatment – bladder incontinence and erectile dysfunction

– with the added possibility of bowel incontinence. This last stated side

effect is fortunately much more rare now than it was some years ago because it is

now possible to measure and aim the radiation dose much more accurately with

modern equipment – provided the team using the equipment are sufficiently

skilled. The one common predictor for a good outcome is the experience of the practitioner.

This may seem an obvious statement but it is often not adequately checked –

every man should know what the actual outcome of the team carrying out the

procedure is by reference to their records, not some published study from

another institution. Good doctors are happy to share this information; those

who aren’t should be avoided.

Apart from the long term side effects

mentioned above, there are some short term ones, although they are not

universally reported. The most common of these is a degree of lethargy as the

radiation goes to work, this usually passes as time goes by. Of course if ADT

is added to the mix, there are further side effects.

Hope this has been of some help – as

I say a good deal depends on the specifics. You might like to go along to http://www.yananow.net/Experiences.html

and read the stories of men who have had radiation treatment.

All the best,

Terry

Herbert in Melbourne, Australia

Diagnosed ‘96: Age

54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. August '06 PSA 27.4

My site is at www.yananow.net

As a

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

to prostate cancer are made with inadequate data: Dr

“Snuffy” Myers.

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ]

On Behalf Of Rebelheart

Sent: 14 September 2006 11:04 AM

To: ProstateCancerSupport

Subject: New Member

I am a new member but in my case, I don't have

anything other than

BPH, which a recent TURP took care of. I do have a problem with my

78 year old father in law who has just be diagnosed with prostate

cancer. I wasn't there to hear or talk to the doctor, but apparently

the cancer has not spread. At his age, the doctor does not want to

do surgery and I agree. He is interested in radiation treatment.

What I would like to know is, what can I tell my father in law to

expect from radiation treatments?

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My husband is 70, a very very active man, still works 14 (or more) hour days, ( we farm) and just completed 44 radation treatments August 24 2006. He is also on hormone therapy, not sure what it was, but first was an injection in the abdomen area, second in the hip. His mainest side effect was diarreah. Cut out milk, and some fats, and that got much better. He did have very mild tiredness maybe a time or two, but it sure was not a big issue for him, altho he has the mind set to keep on keeping on, no matter what. His comment was "Just another of life's challenges " when told he had cancer. It was me that had the sinking feeling in the pit of my stomach and panic. His PSA was 28, with 9 of 12 biopsy samples 60 to 100% involved. He goes back for more tests and physical in Mid October, so we will know more then, but the last PSA was down to 6 something. He was able to drive himself to the treatment center (70 miles one way)

every day but one. Occasionally I went with him just for company. I wish for everyone that chooses radation therapy that they have no more complications than he did, the biggest invonvinence to him was the drive every day. Hope this helps.. Dianne KnightTerry Herbert wrote: One of the questions that any man of

78 should ask is “Do I really need any treatment at all?” The answer to that isn’t easy to find, and a good deal depends on issues like the details of his diagnosis and his overall health issues, but the question should still be considered in appropriate cases. Although you say that he is considering radiation treatment, there are in fact many variations on this option. The main dividing line is between the two main Brachytherapy options and the many EBRT (External Beam Radiation) choices. The Brachytherapy options are essentially known as SI (Seed Implants) where small radioactive pellets are lodged permanently in the gland and HDR (High Dosage Radiation) where pellets with a higher

output are inserted, left for a short time and then withdrawn from the gland. The EBRT choices are many and varied ranging from Proton Beam through a variety of procedures with differing acronyms. Some institutions believe in a combination of Brachytherapy and EBRT – the most well known probably being Radiation College of Atlanta in Georgia about which another member enquired earlier today., while some believe that radiation therapy should be combined with ADT (Androgen Deprivation Therapy), commonly known as hormone therapy. So, what your father in law can expect from radiation therapy will largely depend on what he chooses from this wide menu.

Broadly speaking the main issues with radiation are those that affect all men who have aggressive treatment – bladder incontinence and erectile dysfunction – with the added possibility of bowel incontinence. This last stated side effect is fortunately much more rare now than it was some years ago because it is now possible to measure and aim the radiation dose much more accurately with modern equipment – provided the team using the equipment are sufficiently skilled. The one common predictor for a good outcome is the experience of the practitioner. This may seem an obvious statement but it is often not adequately checked – every man should know what the actual outcome of the team carrying out the procedure is by reference to their records, not some published study from another institution. Good doctors are happy to share this information; those who aren’t should be avoided. Apart from the long term side effects mentioned above, there are some short term ones, although they are not universally reported. The most common of these is a degree of lethargy as the radiation goes to work, this usually passes as time goes by. Of course if ADT is added to the mix, there are further side effects. Hope this has been of some help – as I say a good deal depends on the specifics. You might like to go along to http://www.yananow.net/Experiences.html and read the stories of men who have had radiation treatment. All the best, Terry Herbert in Melbourne, Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. August '06 PSA 27.4 My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr “Snuffy” Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On

Behalf Of RebelheartSent: 14 September 2006 11:04 AMTo: ProstateCancerSupport Subject: New Member I am a new member but in my case, I don't have anything other than BPH, which a recent TURP took care of. I do have a problem with my78 year old father in law who has just be diagnosed with prostate cancer. I wasn't there to hear or talk to the doctor, but apparently the cancer has not spread. At his age, the doctor does not want to do surgery and

I agree. He is interested in radiation treatment.What I would like to know is, what can I tell my father in law to expect from radiation treatments?

Stay in the know. Pulse on the new Yahoo.com. Check it out.

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  • 3 weeks later...

I would strongly urge this man to investigate all of his options

before choosing surgery.

Aubrey

Comment from user:51 yr old African-American Male recently diagnoses with localizedprostate cancer seeking info on surgicial options.

You are especially welcome Stan Cuff as it is important that the African American and Afro Carribean communities are part of the support movement.

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hello im a 54 year old white male , i had my surgery 8/25/06. i had the seed implants , this seems to have worked well for me , i have had no bad effects , I was scared about loss of bladder control and erectile function . None of this happened ,im just normal again ,except for being broke from Dr bills . I went back to work after 4 days.It hurts a lot on the first day but after that ,not too bad . Avoid removal of the prostate if you can, Dr says i get 10 to 15 years of good quality life now. good luck stay in touch Metcalf wrote: Comment from user:51 yr old African-American Male recently diagnoses with localizedprostate cancer seeking info on surgicial options. You are especially welcome Stan Cuff as it is important that the African American and Afro Carribean communities are part of the support movement.

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