New to the group

[Guest guest]

Vestibulitis is what it sounds like you have. Me too! Horrible isn't. Food

doesn't really effect vestibulitis. What you might try is biofeedback via

Dr. Glazer. I have just started it so no results to report yet. Have you

seen someone who specializes in vulvar problems. Where do you live?? My dr.

is in Washington DC. I live in NJ and think it is worth the trip once a

month to see a specilist.

best

Ilene

[Guest guest]

Vestibulitis is what it sounds like you have. Me too! Horrible isn't. Food

doesn't really effect vestibulitis. What you might try is biofeedback via

Dr. Glazer. I have just started it so no results to report yet. Have you

seen someone who specializes in vulvar problems. Where do you live?? My dr.

is in Washington DC. I live in NJ and think it is worth the trip once a

month to see a specilist.

best

Ilene

[Guest guest]

I suggest you read the article at:

http://www.aafp.org/afp/990315ap/1547.html

which goes into the differences involved in various kinds of vulvodynia (vulva

pain). You said you think you have VSS. Did you mean VVS? I am not sure what

VSS is but the article goes into many different syndromes.

Vulvar Vestibulitis Syndrome is covered there and the low oxalate diet is

reported to be effective for it.

My symptoms have gotten much much better since I started watching my diet. I

started with the low oxalate diet and learned which foods bother me and which

ones I can tolerate. It has made a big difference. But it does not appear to

be oxalates only. You need to become a food detective and learn what you can

handle.

Ora

>HI everyone! My name is Rhonda. I just found this newsgroup so this

>is my first entry. I figure I'll start by writing a lil about

>myself. I've been recently diagnosed with Vulvodynia but I think

>it's more like VSS because I don't have chronic pain - only when

>something touches or penetrates the vulva area then the pain,

>burning, itching, stinging, swelling and all of the above sets in.

>My previous doc had me worried I had endometriosis but then I read

>about Vulvodynia in Redbook & took the mag to a new FEMALE doctor who

>could understand what I am feeling. My male doc dismissed me when I

>said I have pain during intercourse.

[Guest guest]

I suggest you read the article at:

http://www.aafp.org/afp/990315ap/1547.html

which goes into the differences involved in various kinds of vulvodynia (vulva

pain). You said you think you have VSS. Did you mean VVS? I am not sure what

VSS is but the article goes into many different syndromes.

Vulvar Vestibulitis Syndrome is covered there and the low oxalate diet is

reported to be effective for it.

My symptoms have gotten much much better since I started watching my diet. I

started with the low oxalate diet and learned which foods bother me and which

ones I can tolerate. It has made a big difference. But it does not appear to

be oxalates only. You need to become a food detective and learn what you can

handle.

Ora

>HI everyone! My name is Rhonda. I just found this newsgroup so this

>is my first entry. I figure I'll start by writing a lil about

>myself. I've been recently diagnosed with Vulvodynia but I think

>it's more like VSS because I don't have chronic pain - only when

>something touches or penetrates the vulva area then the pain,

>burning, itching, stinging, swelling and all of the above sets in.

>My previous doc had me worried I had endometriosis but then I read

>about Vulvodynia in Redbook & took the mag to a new FEMALE doctor who

>could understand what I am feeling. My male doc dismissed me when I

>said I have pain during intercourse.

[Guest guest]

I suggest you read the article at:

http://www.aafp.org/afp/990315ap/1547.html

which goes into the differences involved in various kinds of vulvodynia (vulva

pain). You said you think you have VSS. Did you mean VVS? I am not sure what

VSS is but the article goes into many different syndromes.

Vulvar Vestibulitis Syndrome is covered there and the low oxalate diet is

reported to be effective for it.

My symptoms have gotten much much better since I started watching my diet. I

started with the low oxalate diet and learned which foods bother me and which

ones I can tolerate. It has made a big difference. But it does not appear to

be oxalates only. You need to become a food detective and learn what you can

handle.

Ora

>HI everyone! My name is Rhonda. I just found this newsgroup so this

>is my first entry. I figure I'll start by writing a lil about

>myself. I've been recently diagnosed with Vulvodynia but I think

>it's more like VSS because I don't have chronic pain - only when

>something touches or penetrates the vulva area then the pain,

>burning, itching, stinging, swelling and all of the above sets in.

>My previous doc had me worried I had endometriosis but then I read

>about Vulvodynia in Redbook & took the mag to a new FEMALE doctor who

>could understand what I am feeling. My male doc dismissed me when I

>said I have pain during intercourse.

[Guest guest]

Welcome Rhonda,

Sorry for the reason you are here,but this is a great group of gals who can

offer lots of help. I have chronic burning pain, what seems to me to be

vulvodynia for past year and a half, but never actually diagnosed. Its funny

you were dx with vulvodynia and your symptoms do sound like VVS. My dr said

it sounds like I have VVS, but my symptoms are not just when touched but all

of the time.

Let me know how the amitriptiline works. I am also thinking about taking it

myself. Everyone is different-some get total relief from the medication

you're on while others the cause is food and low oxalate diet or avoiding

certain foods work; some physical therapy is the answer. I just started PT a

month ago, and while it hasn't helped yet I am going to continue a month

longer to see if it may work. You just have to pick one type of treatment to

try and see if that may work for you.

This is very frustrating, and I am also a newly wed and can totally relate

to not being in the mood, and all of the emotional aspects of this horrible

problem. I don't know much about the allergy testing, b/c I haven't done

that yet either.

If you have any question feel free to write.

Melinda

>

> Subject: New to the Group

>

> HI everyone! My name is Rhonda. I just found this newsgroup so this

> is my first entry. I figure I'll start by writing a lil about

> myself. I've been recently diagnosed with Vulvodynia but I think

> it's more like VSS because I don't have chronic pain - only when

> something touches or penetrates the vulva area then the pain,

> burning, itching, stinging, swelling and all of the above sets in.

> My previous doc had me worried I had endometriosis but then I read

> about Vulvodynia in Redbook & took the mag to a new FEMALE doctor who

> could understand what I am feeling. My male doc dismissed me when I

> said I have pain during intercourse.

>

> She prescribed me an antidepressant called amitriplyine (SP?) and

> Lidocaine ointment. One pill alone hit me like a ton of bricks. I

> don't like being on a maintenance drug but is there really anything

> else? I just picked up the RX yesterday so I'm just now

> investigating treatment. I've had the problem for over 3 yrs but

> it's moved from physical to psychological to where I don't even

> desire sex. (This is not a good thing for a newlywed). That's why I

> finally decided to insist that some dtr look into my symptoms further.

>

> I have soo many questions for all of you but one I'd like to ask is,

> does it ever get better, seriously? What is Oxylace (sp) and what

> foods is it found in cuz I'll start to avoid every one? Also, what

> is actually going to make me desire & enjoy sex again and how is this

> drug going to stop the pain down there? UGHH.

>

> I read something about an allergy test. How do I get one and where?

> It seems that a lot of you have said you are allergic to things you

> may never known u were and that can make a silent difference on the

> pain.

>

> Well, guess that's all for now. Trust me, I have many more q's but

> am just now learning abt this condition. Thanks for your patience

> and any comments/advice you can offer.

>

> Nice meeting all of you and hope to keep in touch on this site!

>

>

>

>

>

>

[Guest guest]

Welcome Rhonda,

Sorry for the reason you are here,but this is a great group of gals who can

offer lots of help. I have chronic burning pain, what seems to me to be

vulvodynia for past year and a half, but never actually diagnosed. Its funny

you were dx with vulvodynia and your symptoms do sound like VVS. My dr said

it sounds like I have VVS, but my symptoms are not just when touched but all

of the time.

Let me know how the amitriptiline works. I am also thinking about taking it

myself. Everyone is different-some get total relief from the medication

you're on while others the cause is food and low oxalate diet or avoiding

certain foods work; some physical therapy is the answer. I just started PT a

month ago, and while it hasn't helped yet I am going to continue a month

longer to see if it may work. You just have to pick one type of treatment to

try and see if that may work for you.

This is very frustrating, and I am also a newly wed and can totally relate

to not being in the mood, and all of the emotional aspects of this horrible

problem. I don't know much about the allergy testing, b/c I haven't done

that yet either.

If you have any question feel free to write.

Melinda

>

> Subject: New to the Group

>

> HI everyone! My name is Rhonda. I just found this newsgroup so this

> is my first entry. I figure I'll start by writing a lil about

> myself. I've been recently diagnosed with Vulvodynia but I think

> it's more like VSS because I don't have chronic pain - only when

> something touches or penetrates the vulva area then the pain,

> burning, itching, stinging, swelling and all of the above sets in.

> My previous doc had me worried I had endometriosis but then I read

> about Vulvodynia in Redbook & took the mag to a new FEMALE doctor who

> could understand what I am feeling. My male doc dismissed me when I

> said I have pain during intercourse.

>

> She prescribed me an antidepressant called amitriplyine (SP?) and

> Lidocaine ointment. One pill alone hit me like a ton of bricks. I

> don't like being on a maintenance drug but is there really anything

> else? I just picked up the RX yesterday so I'm just now

> investigating treatment. I've had the problem for over 3 yrs but

> it's moved from physical to psychological to where I don't even

> desire sex. (This is not a good thing for a newlywed). That's why I

> finally decided to insist that some dtr look into my symptoms further.

>

> I have soo many questions for all of you but one I'd like to ask is,

> does it ever get better, seriously? What is Oxylace (sp) and what

> foods is it found in cuz I'll start to avoid every one? Also, what

> is actually going to make me desire & enjoy sex again and how is this

> drug going to stop the pain down there? UGHH.

>

> I read something about an allergy test. How do I get one and where?

> It seems that a lot of you have said you are allergic to things you

> may never known u were and that can make a silent difference on the

> pain.

>

> Well, guess that's all for now. Trust me, I have many more q's but

> am just now learning abt this condition. Thanks for your patience

> and any comments/advice you can offer.

>

> Nice meeting all of you and hope to keep in touch on this site!

>

>

>

>

>

>

[Guest guest]

Welcome to our group. I think you'll find it as a great source for support

and knowledge. No, I haven't tried acupuncure, although I have thought

about it. If all else fails,I will try it. I think Seema, a girl in this

group, is trying it right now. I am also considering biofeedback as that is

what a specialist suggested to me, but that would mean I would have to go

back to see the dr. trained by Dr.Glazer which is 7 hrs away from me and

also buy the equipment. So I am going to give Neurontin more time and try to

increase the dose before I try biofeedback. Have you done the Glazer

Protocol for biofeedback? I am interested on what kind of biofeedback you

are doing and if it has helped. Also do you have vulvodynia or VVS ?

Thanks,

Melinda

" jonpaj " wrote:

>Subject: New to Group

>

>Hi. I am new to this group and was wondering if anyone has had any

>luck with acupuncture? I would like to try this route, have had some

>success with Biofeedback but was wanted to see if this would push me

>a little further?

>

_________________________________________________________________

Surf the Web without missing calls! Get MSN Broadband.

http://resourcecenter.msn.com/access/plans/freeactivation.asp

[Guest guest]

Welcome to our group. I think you'll find it as a great source for support

and knowledge. No, I haven't tried acupuncure, although I have thought

about it. If all else fails,I will try it. I think Seema, a girl in this

group, is trying it right now. I am also considering biofeedback as that is

what a specialist suggested to me, but that would mean I would have to go

back to see the dr. trained by Dr.Glazer which is 7 hrs away from me and

also buy the equipment. So I am going to give Neurontin more time and try to

increase the dose before I try biofeedback. Have you done the Glazer

Protocol for biofeedback? I am interested on what kind of biofeedback you

are doing and if it has helped. Also do you have vulvodynia or VVS ?

Thanks,

Melinda

" jonpaj " wrote:

>Subject: New to Group

>

>Hi. I am new to this group and was wondering if anyone has had any

>luck with acupuncture? I would like to try this route, have had some

>success with Biofeedback but was wanted to see if this would push me

>a little further?

>

_________________________________________________________________

Surf the Web without missing calls! Get MSN Broadband.

http://resourcecenter.msn.com/access/plans/freeactivation.asp

[Guest guest]

Hi Jan!

Firslty: welcome you to the group/family!!! You sound just like the majority of us here!! The downward spiral, etc... And, like everyone else here: I've also always had a positive attitude and still try the best i can to hold onto it ---- but please excuse me, as this month my positive attitude has diminished a whole lot - but most of my cynical remarks should be taken w/ a grain of salt... i'm TRYING to just make fun of my situation rather than dwell on it.

I understand the lack of compassion and understanding from your family and most importantly: from your husband. Is he willing to read materials re: FMS to gain a better understanding and to know that what you are suffering from is very real and how important his support and compassion is for your emotional wellbeing? If so: there's a mountain of information that you can find in this site's files & databases.

Re: weight gain - i've gained about 40lbs also since the onset of FMS. Something i've just had to surrender to and do the best i can to work on losing the weight. It's truly a shame if your husband cannot see you in the same light as he did when he first married you - what are a few extra pounds? More to love, in my opinion.... But i do admire you in starting an exercise program. I'm still working on building some motivation & getting my mind around the concept of intentional exercise.

I've got to head out to work now -- I look forward to getting to know you more!

Aloooooooooha!-JaanaModerator / Member De-Bouncerator / humble Group servant

New to the group

Hello everyone~ I am new to this group and have beenreading the posts for the last few days. You seem likea very supportive group of people and I hope I canbecome a part of it all. I have had fibro for almost20 years!! And for many years I kept it in controlthru exercise and a positive attitude. I haveexperienced many traumatic stresses in my life andthen the last 5 years I have also had severe backproblems leading to surgery and then a fracture anklealso requiring surgery with plates, screws, etc tohold me together. Needless to say~the fibro is nolonger in control~it is worse than ever. I havegeneral pain from the back injury and ankle fracturebut then the fibro pain and weakness adds a whole newlayer to the depth of the pain. I have been severelydepressed to the point of checking out~but I have 2great kids (19, and 23) so I could never do that tothem. I was the kind of "do it all" wife and motherfor so many years and now that is all just amemory~but, my family can't handle it and totally denymy disability. I am married but have absolutey nosupport from my husband other than financially. Hetotally denies, ignores, and belittles my healthissues and that only makes things worse. To makematters worse I have gained 40+ pounds in the last fewyears to an allready overweight frame. That is sodifficult to deal with on many levels~self esteem,intimacy, etc. And my husband wont touch me at allwhich is just so sad~I need to be loved and held morethan ever and I am not recieving any form of affectionwhat soever. I cannot work and haven't for the last 18 months butbefore that I was an RN and worked for many years tothe point of having a nice admin job~that is all gonenow. I have tried to work but the pain and weakness isjust overwhelming. I am taking some classes in designand may be able to use that in the future if I canever get back to work. I am just starting an exerciseprogram but with baby steps~just a few times a weekfor about 1/2 hour and then some walking each day. Ithurts so much but I have to try something positive. I have been on tons of meds over the years and now amon an antidepressant, and meds for chronic pain. Iwould love to get off them all but it's so hard to getthru a day without pain meds. Well I have written enough of my story~ I don't wantto bore anyone any longer.I wanted to introduce myselfand hope to be a part of this wonderful support group.I would appreciate any and all responses. Thanks forlistening. Jan

[Guest guest]

Janna~(Firslty: welcome you to the group/family!!! You

sound just like the majority of us here!! The downward

spiral, etc...)

Thanks for your kind reply. I was so hoping someone

would anwer me!! I have tried to get him to read stuff

about Fibro, have left books around the house, emailed

him articles, etc. But he is such a workaholic that he

doen't even look at the stuff about me. I am an

afterthought in his life except when he needs me to do

something. The weight is such an issue~I would have

hoped our love had more depth than what 40 pounds

could effect but after 25 years of marraige he just

doesn't want to try anymore. I am hungry for affection

though and if I felt better would probably look for it

elsewhere even though that goes against all my ethics

and values! Anyway~ thanks again for answering

me~hopefully I can offer you some support as well in

the future. Have a nice day. Jan

--- Jaana Mäkipää wrote:

> Hi Jan!

>

> Firslty: welcome you to the group/family!!! You

> sound just like the majority of us here!! The

> downward spiral, etc... And, like everyone else

> here: I've also always had a positive attitude and

> still try the best i can to hold onto it ---- but

> please excuse me, as this month my positive attitude

> has diminished a whole lot - but most of my cynical

> remarks should be taken w/ a grain of salt... i'm

> TRYING to just make fun of my situation rather than

> dwell on it.

>

> I understand the lack of compassion and

> understanding from your family and most importantly:

> from your husband. Is he willing to read materials

> re: FMS to gain a better understanding and to know

> that what you are suffering from is very real and

> how important his support and compassion is for your

> emotional wellbeing? If so: there's a mountain of

> information that you can find in this site's files &

> databases.

>

> Re: weight gain - i've gained about 40lbs also since

> the onset of FMS. Something i've just had to

> surrender to and do the best i can to work on losing

> the weight. It's truly a shame if your husband

> cannot see you in the same light as he did when he

> first married you - what are a few extra pounds?

> More to love, in my opinion.... But i do admire you

> in starting an exercise program. I'm still working

> on building some motivation & getting my mind around

> the concept of intentional exercise.

>

> I've got to head out to work now -- I look forward

> to getting to know you more!

>

> Aloooooooooha!

> -Jaana

> Moderator / Member De-Bouncerator / humble Group

> servant

>

> New to the group

>

>

> Hello everyone~ I am new to this group and have been

> reading the posts for the last few days. You seem

> like

> a very supportive group of people and I hope I can

> become a part of it all. I have had fibro for almost

> 20 years!! And for many years I kept it in control

> thru exercise and a positive attitude. I have

> experienced many traumatic stresses in my life and

> then the last 5 years I have also had severe back

> problems leading to surgery and then a fracture

> ankle

> also requiring surgery with plates, screws, etc to

> hold me together. Needless to say~the fibro is no

> longer in control~it is worse than ever. I have

> general pain from the back injury and ankle fracture

> but then the fibro pain and weakness adds a whole

> new

> layer to the depth of the pain. I have been severely

> depressed to the point of checking out~but I have 2

> great kids (19, and 23) so I could never do that to

> them. I was the kind of " do it all " wife and mother

> for so many years and now that is all just a

> memory~but, my family can't handle it and totally

> deny

> my disability. I am married but have absolutey no

> support from my husband other than financially. He

> totally denies, ignores, and belittles my health

> issues and that only makes things worse. To make

> matters worse I have gained 40+ pounds in the last

> few

> years to an allready overweight frame. That is so

> difficult to deal with on many levels~self esteem,

> intimacy, etc. And my husband wont touch me at all

> which is just so sad~I need to be loved and held

> more

> than ever and I am not recieving any form of

> affection

> what soever.

> I cannot work and haven't for the last 18 months but

> before that I was an RN and worked for many years to

> the point of having a nice admin job~that is all

> gone

> now. I have tried to work but the pain and weakness

> is

> just overwhelming. I am taking some classes in

> design

> and may be able to use that in the future if I can

> ever get back to work. I am just starting an

> exercise

> program but with baby steps~just a few times a week

> for about 1/2 hour and then some walking each day.

> It

> hurts so much but I have to try something positive.

>

> I have been on tons of meds over the years and now

> am

> on an antidepressant, and meds for chronic pain. I

> would love to get off them all but it's so hard to

> get

> thru a day without pain meds.

> Well I have written enough of my story~ I don't want

> to bore anyone any longer.I wanted to introduce

> myself

> and hope to be a part of this wonderful support

> group.

> I would appreciate any and all responses. Thanks for

> listening. Jan

>

>

__________________________________

Discover Yahoo!

Stay in touch with email, IM, photo sharing and more. Check it out!

http://discover.yahoo.com/stayintouch.html

[Guest guest]

Hello Steve. My name is Mark and I too have just been diagnosed with PCa. I am also in the decision making process for treatment. After reading, researching, and talking to my doctor, I am still trying to decide what to do. I am leaning towards proton beam therapy. You should read about this treament. I have also come to the conclusion that the decision ultimately is mine and mine alone. It has not been easy for me, I hope your decision will be an easy one. Best of luck and best of health to you.wonderwhat72 wrote: Hello everyone. I am Steve and have recently been diagnosed with anearly stage cancer of the prostate. I am wanting to make a wisedecision on treatment. I talked with my urologist last week and willbe at the radiation therapy clinic Friday. After 7 major surgeries, Idid not want to go through another. I have PC on both sides of myfamily - dad and 2 of his brothers and 2 of mom's brothers. I amemphatic about getting the annual check-up. This year, the PSA wentfrom 1.3 in March '07 to 2.5 in Feb '08 and 3.8 in March (was passingblood in the urine. Typical-right?). The Dr. stated that it was veryearly in development and highly treatable. At 56, this is not hard toaccept. I have helped others deal with problems as I am a pastor andhave dealt with cancer, heart attack families, deaths of accidentvictims, Alzheimers, and many other issues.What I would

like would be honest opinions on radiation, cryotherapy,and surgery (cancer is highly localized). I am reading on-linearticles, researching through the library, and reading all brochures Ican get my hands on.Thank you for your honesty.Steve

[Guest guest]

Thanks Mark. My wife is going with me for the consult to the CARTI clinic.I know that I have chatted with nurses on the floor where the recovery takes place as well as people who have gone through the various procedures. I agree that it is ultimately my decision. I know that it is actually in God's hands as to the cure. I like the info on the proton therapy. Only 2 options that I definitely ruled out were the cryotherapy and wait and see. Have not found anyone who had the cryotherapy. Doctor was not very enthusiastic about it. Of course, he wants me to do whatever I feel comfortable with. As a pastor who has been through 3 knee surgeries, 3 back surgeries, and gallbladder as well, I am serious about looking at the

non-surgical possibilities.Steve

[Guest guest]

Thanks Mark. My wife is going with me for the consult to the CARTI clinic.I know that I have chatted with nurses on the floor where the recovery takes place as well as people who have gone through the various procedures. I agree that it is ultimately my decision. I know that it is actually in God's hands as to the cure. I like the info on the proton therapy. Only 2 options that I definitely ruled out were the cryotherapy and wait and see. Have not found anyone who had the cryotherapy. Doctor was not very enthusiastic about it. Of course, he wants me to do whatever I feel comfortable with. As a pastor who has been through 3 knee surgeries, 3 back surgeries, and gallbladder as well, I am serious about looking at the

non-surgical possibilities.Steve

[Guest guest]

Mark - Just my opinion, but based on my own experience, get it taken out. With robotic surgery, you will out of the hospital in 24 hours and playing golf within a week. Why spend the rest of your life worrying about something that can be dealt with permanently? You will have about 5 small incisions and probably won't even need aspirin the next day. With modern nerve and blood vessel sparing techniques, concerns regarding incontince and impotence are real, but not daunting.

I don't know much about radiation, but I'm told that some forms of radiation treatment eventually kills or damages the pelvic nerves and you can eventually have impotency problems, but with less likelihood of reganing potency that after surgery. Maybe radiation beams are so focused now, that that is not as much of a problem. Again, I don't know that much about it, I'm only raising that aspect so you can ask the right questions of the right people.

Good luck with your treatment. Thank the Lord that you found it early, that is the best treatment option of all.

Re: New to the group

Hello Steve. My name is Mark and I too have just been diagnosed with PCa. I am also in the decision making process for treatment. After reading, researching, and talking to my doctor, I am still trying to decide what to do. I am leaning towards proton beam therapy. You should read about this treament. I have also come to the conclusion that the decision ultimately is mine and mine alone. It has not been easy for me, I hope your decision will be an easy one. Best of luck and best of health to you.wonderwhat72 <wonderwhat72@ yahoo.com> wrote:

Hello everyone. I am Steve and have recently been diagnosed with anearly stage cancer of the prostate. I am wanting to make a wisedecision on treatment. I talked with my urologist last week and willbe at the radiation therapy clinic Friday. After 7 major surgeries, Idid not want to go through another. I have PC on both sides of myfamily - dad and 2 of his brothers and 2 of mom's brothers. I amemphatic about getting the annual check-up. This year, the PSA wentfrom 1.3 in March '07 to 2.5 in Feb '08 and 3.8 in March (was passingblood in the urine. Typical-right? ). The Dr. stated that it was veryearly in development and highly treatable. At 56, this is not hard toaccept. I have helped others deal with problems as I am a pastor andhave dealt with cancer, heart attack families, deaths of accidentvictims, Alzheimers, and many other issues.What I would like would be honest opinions on radiation,

cryotherapy,and surgery (cancer is highly localized). I am reading on-linearticles, researching through the library, and reading all brochures Ican get my hands on.Thank you for your honesty.Steve

[Guest guest]

Mr. Pender, I have a friend in Texas who is getting ready to go to M D for the Proton treatment. He decided that he would get it done at MD . After all of my surgeries, I have been leery since my last was in December on my back. One of my seminary students is an RN and he works the floor at St. 's in Little Rock. He said "surgery is the best option". Meanwhile, a lady who is an RN and works at UAMS in Little Rock, told me the radiation or proton was best. I guess we men have our cross to bear.Your info is right on the mark with people I have chatted with over the past week. I have spoken personally on line with about 60 people. Those who had surgery, 95 % said they would do it

again if they had to. Of those using radiation or chemo, only 35-40% said that. My uncle had the TURP and said that he would do it again if he had to. This is why this group is such an asset. I want to hear from people who've been there and done that as it helps this old preacher make wiser decisions. Guess I'm not that old at 56!Thanks! Steve Re: [ProstateCancerSupp ort] New to the groupHello Steve. My name is Mark and I too have just been diagnosed with PCa. I am also in the decision making process for treatment. After reading, researching, and talking to my doctor, I am still trying to decide what to do. I am leaning towards proton beam therapy. You should read about this treament. I have also come to the conclusion that the decision ultimately is mine and mine alone. It has not been easy for me, I hope your decision will be an easy one. Best of luck and best of health to you.wonderwhat72 <wonderwhat72@ yahoo.com> wrote: Hello everyone. I am Steve and have recently been diagnosed with anearly stage cancer of the prostate. I am wanting to make a wisedecision on treatment. I talked with my urologist last week and willbe at the radiation therapy clinic Friday. After 7 major surgeries, Idid not want to go through another. I have PC on both sides of myfamily - dad and 2 of his brothers and 2 of mom's brothers. I amemphatic about getting the annual check-up. This year, the PSA wentfrom 1.3 in March '07 to 2.5 in Feb '08 and 3.8 in March (was passingblood in the urine. Typical-right? ). The Dr. stated that it was veryearly in development and highly treatable. At 56, this is not hard toaccept. I have helped others deal with problems as I am a pastor andhave dealt with cancer, heart attack families, deaths of accidentvictims,

Alzheimers, and many other issues.What I would like would be honest opinions on radiation,

cryotherapy,and surgery (cancer is highly localized). I am reading on-linearticles, researching through the library, and reading all brochures Ican get my hands on.Thank you for your honesty.Steve

[Guest guest]

> Hello everyone. I am Steve and have recently been diagnosed with an

> early stage cancer of the prostate. I am wanting to make a wise

> decision on treatment.

Oh my, another Steve.

> I talked with my urologist last week and will be at the radiation

> therapy clinic Friday. After 7 major surgeries, I did not want to go

> through another. I have PC on both sides of my family - dad and 2 of

> his brothers and 2 of mom's brothers. I am emphatic about getting the

> annual check-up. This year, the PSA went from 1.3 in March '07 to

> 2.5 in Feb '08 and 3.8 in March (was passing blood in the urine.

> Typical-right?). The Dr. stated that it was very early in development

> and highly treatable.

What is the Gleason score? This is vital information that informs one of

the degree of aggressiveness of the disease.

Also, what is the clinical stage? This is expressed as the TNM score: T

- tumor, N = (lymph) nodes, M = metastasis. It is noted as, for

example, T2aN#M#.

PSA is not, in and of itself, diagnostic of prostate cancer (PCa).

Anything that stresses the gland in the roughly 48 hours prior to the

blood draw can temporarily raise the result. Examples: digital rectal

examination (DRE), ejaculation, even bike riding. Also, an enlarged

prostate or an infection can raise it. Has the uro prescribed something

to address possible infection, such as Cipro? After a couple of weeks on

such a med, the PSA is rechecked.

And no, passing blood in the urine is, so far as I can find, not typical

of PCa.

(snip)

> What I would like would be honest opinions on radiation, cryotherapy,

> and surgery (cancer is highly localized). I am reading on-line

> articles, researching through the library, and reading all brochures

> I can get my hands on.

Opinions would be all over the map. Anecdotes can be interesting, but

should not control selection of treatment (tx).

There is a lot to do, but considering the numbers, apparently time to

do it.

(1) I recommend having the biopsy specimens examined by a pathology

lab that specializes in prostate cancer (PCa). Everything that is

done from here on depends upon the accuracy of the Gleason scoring.

Here is a list:

Bostwick Laboratories [800] 214-6628

Dianon Laboratories [800]328-2666 (select 5 for client services)

Jon Epstein (Hopkins) [410]955-5043 or [410] 955-2162

Grignon (Michigan) [313] 745-2520

Jon Oppenheimer (Tennessee) [888] 868-7522

UroCor, Inc. [800]411-1839

The cost, last I heard, was about $350. More if further tests are

ordered. At least the basic cost is normally covered by insurance as a

" second opinion. "

The chosen lab can give instructions on shipment arrangements. BTW, in

civilized jurisdictions, those specimens are the property of the

patient, not the lab and not the medic. Sometimes the latter don't

understand that and it's necessary to be firm with them.

(2) The authoritative website of the Prostate Cancer Research

Institute (PCRI) at http://prostate-cancer.org/index.html is an

excellent beginning.

Start with the section " Newly Diagnosed " at

http://prostate-cancer.org/education/education.html#newly_diagnosed

Some medics who specialize in treatment (tx) of PCa are listed via

this portal:

http://prostate-cancer.org/resource/find-a-physician.html

(3) I heartily recommend this text on PCa: _A Primer on Prostate

Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical

oncologist and PCa specialist B. Strum, MD and PCa warrior

Donna Pogliano. It is available from the PCRI website and the like,

as well as Amazon (30+ five-star reviews), & Noble, and

bookstores. A lifesaver, as I very well know.

(4) Personal contact with other patients can be very helpful. Local

chapters of the international support group Us Too can be found via

their website at http://www.ustoo.com/chapter_nearyou.asp

Regards,

Steve J

" Empowerment: taking responsibility for and authority over one's own

outcomes based on education and knowledge of the consequences and

contingencies involved in one's own decisions. This focus provides the

uplifting energy that can sustain in the face of crisis. "

--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled

" The Empowered Patient's Guide. "

[Guest guest]

Steve Jordan,Yes, another Steve here. Is it a name curse or something? As for the Gleason score, I do not hear a lot of things well so I may have misunderstood his numbers and I forgot to ask. New at all of this. I think he said either 5 or 6 and 2+3 or 3+3. I know the PSA is NOT the deciding factor. However, my doctor subscribes to the age factor and number on the PSA and said that at my age he uses 2.5 as the borderline. My DRE was done well before the blood was drawn and I had a bit of trouble with ED, so I had no sex or ejaculation to cause the rise. I also am aware that blood in the urine is not a symptom of prostate trouble only, but when he scoped my urethra out, he said that there was evidence of a

problem with the prostate. BTW, the DRE was normal. There was other evidence pointing to a problem and the symptoms were classic for pros trouble. I was on Levaquin for almost 4 weeks, which should have helped, but the PSA number rose instead.Thank you for your input. I am printing out the responses I get so my wife can read them as well. I will let everyone know what my decision is as soon as I decide. Thanks to all.Steve

[Guest guest]

Dear Steve,

I am so sorry to hear you are going through all this. My husband was diagnoised in January of this year. We were just sick with worry. I found this group and it has helped me more than words can say. My husband did not want surgery. He had a PSA of 7.1 and Gleason of 9. It was an aggressive form of cancer. The doctors immediately put him on Hormone Therapy to stop the spread of the cancer and to shrink the prostate. We first wanted Proton Beam Radiation therapy but were told the cancer maybe on the outside wall of the prostate so they wanted to radiate the lymph nodes as well, which meant IMRT (Intensity Modulated Radiation Therapy). We got five different opinions and the only thing they all agreed on was that he needed radiation, even if he had surgery. He started his IMRT treatments this week.

All I can tell you is get as much information as you can on different options and get more opinions. Ask questions and on-line you can get all kinds of information. But I'm sure this group can help especially with questions. You will be in my thoughts and prayers.

Sincerely,

Sheila

-------------- Original message --------------

Hello everyone. I am Steve and have recently been diagnosed with anearly stage cancer of the prostate. I am wanting to make a wisedecision on treatment. I talked with my urologist last week and willbe at the radiation therapy clinic Friday. After 7 major surgeries, Idid not want to go through another. I have PC on both sides of myfamily - dad and 2 of his brothers and 2 of mom's brothers. I amemphatic about getting the annual check-up. This year, the PSA wentfrom 1.3 in March '07 to 2.5 in Feb '08 and 3.8 in March (was passingblood in the urine. Typical-right?). The Dr. stated that it was veryearly in development and highly treatable. At 56, this is not hard toaccept. I have helped others deal with problems as I am a pastor andhave dealt with cancer, heart attack families, deaths of accidentvictims, Alzheimers, and many other issues.What I would like would be honest opinions on radiation, cryotherapy,and surgery (c

ancer is highly localized). I am reading on-linearticles, researching through the library, and reading all brochures Ican get my hands on.Thank you for your honesty.Steve

[Guest guest]

Dear Steve,

I am so sorry to hear you are going through all this. My husband was diagnoised in January of this year. We were just sick with worry. I found this group and it has helped me more than words can say. My husband did not want surgery. He had a PSA of 7.1 and Gleason of 9. It was an aggressive form of cancer. The doctors immediately put him on Hormone Therapy to stop the spread of the cancer and to shrink the prostate. We first wanted Proton Beam Radiation therapy but were told the cancer maybe on the outside wall of the prostate so they wanted to radiate the lymph nodes as well, which meant IMRT (Intensity Modulated Radiation Therapy). We got five different opinions and the only thing they all agreed on was that he needed radiation, even if he had surgery. He started his IMRT treatments this week.

All I can tell you is get as much information as you can on different options and get more opinions. Ask questions and on-line you can get all kinds of information. But I'm sure this group can help especially with questions. You will be in my thoughts and prayers.

Sincerely,

Sheila

-------------- Original message --------------

Hello everyone. I am Steve and have recently been diagnosed with anearly stage cancer of the prostate. I am wanting to make a wisedecision on treatment. I talked with my urologist last week and willbe at the radiation therapy clinic Friday. After 7 major surgeries, Idid not want to go through another. I have PC on both sides of myfamily - dad and 2 of his brothers and 2 of mom's brothers. I amemphatic about getting the annual check-up. This year, the PSA wentfrom 1.3 in March '07 to 2.5 in Feb '08 and 3.8 in March (was passingblood in the urine. Typical-right?). The Dr. stated that it was veryearly in development and highly treatable. At 56, this is not hard toaccept. I have helped others deal with problems as I am a pastor andhave dealt with cancer, heart attack families, deaths of accidentvictims, Alzheimers, and many other issues.What I would like would be honest opinions on radiation, cryotherapy,and surgery (c

ancer is highly localized). I am reading on-linearticles, researching through the library, and reading all brochures Ican get my hands on.Thank you for your honesty.Steve

[Guest guest]

On June 18, Steve.... Replied to me:

> Yes, another Steve here. Is it a name curse or something?

In other PCa support sites, there also seems to be an infestation of

Steves. One way to prevent confusion is to use first name + initial of

last. Thus: Steve J.

> As for the

> Gleason score, I do not hear a lot of things well so I may have

> misunderstood his numbers and I forgot to ask. New at all of this. I

> think he said either 5 or 6 and 2+3 or 3+3.

I cannot state too strongly that the Gleason score, authenticated by an

expert, is absolutely vital. Everything that is done from here on is

utterly dependent upon its accuracy.

I also strongly recommend setting up a PCa file, in which very test

result, notes, everything related to this is preserved. The patient has

a right to those records. In my case, I have copies of all tests sent

directly to me.

It has saved my rear several times, most recently when I had a biopsy of

a suspicious T-3 (third thoracic vertebra). When I reviewed my copy of

the pathology report, it referred to T-4, the *fourth* thoracic

vertebra. I nailed the medic about this, and he apologized and made sure

that the record was corrected. Take home lesson: If I had not made sure

that I see every test result, etc., I would never have known of that

error and my present RT would be directed at the wrong site. Just a tad

important, I think. I believe that we cannot rely upon others to have

our best interests uppermost in their attention. The medics and their

staffs are human and prone to error.

> I know the PSA is NOT the

> deciding factor. However, my doctor subscribes to the age factor and

> number on the PSA and said that at my age he uses 2.5 as the borderline.

Yes, 2.5 ng/mL (nanograms per milliliter) is the reference point, all

else being accounted for. A test result in excess of standard should be

considered suspicious for PCa until proven otherwise.

(snip)

Good hunting. The task of self-empowerment is daunting, but the reward

is priceless.

Regards,

Steve J

" As a physician, I am painfully aware that most of the decisions we make

with

regard to prostate cancer are made with inadequate data. "

-- L. " Snuffy " Myers, MD

Medical oncologist. PCa survivor.

[Guest guest]

On June 18, Steve.... Replied to me:

> Yes, another Steve here. Is it a name curse or something?

In other PCa support sites, there also seems to be an infestation of

Steves. One way to prevent confusion is to use first name + initial of

last. Thus: Steve J.

> As for the

> Gleason score, I do not hear a lot of things well so I may have

> misunderstood his numbers and I forgot to ask. New at all of this. I

> think he said either 5 or 6 and 2+3 or 3+3.

I cannot state too strongly that the Gleason score, authenticated by an

expert, is absolutely vital. Everything that is done from here on is

utterly dependent upon its accuracy.

I also strongly recommend setting up a PCa file, in which very test

result, notes, everything related to this is preserved. The patient has

a right to those records. In my case, I have copies of all tests sent

directly to me.

It has saved my rear several times, most recently when I had a biopsy of

a suspicious T-3 (third thoracic vertebra). When I reviewed my copy of

the pathology report, it referred to T-4, the *fourth* thoracic

vertebra. I nailed the medic about this, and he apologized and made sure

that the record was corrected. Take home lesson: If I had not made sure

that I see every test result, etc., I would never have known of that

error and my present RT would be directed at the wrong site. Just a tad

important, I think. I believe that we cannot rely upon others to have

our best interests uppermost in their attention. The medics and their

staffs are human and prone to error.

> I know the PSA is NOT the

> deciding factor. However, my doctor subscribes to the age factor and

> number on the PSA and said that at my age he uses 2.5 as the borderline.

Yes, 2.5 ng/mL (nanograms per milliliter) is the reference point, all

else being accounted for. A test result in excess of standard should be

considered suspicious for PCa until proven otherwise.

(snip)

Good hunting. The task of self-empowerment is daunting, but the reward

is priceless.

Regards,

Steve J

" As a physician, I am painfully aware that most of the decisions we make

with

regard to prostate cancer are made with inadequate data. "

-- L. " Snuffy " Myers, MD

Medical oncologist. PCa survivor.

[Guest guest]

Hi Steve,

Welcome and sorry you have to be here. Your attitude sounds really

great and I am sure that your faith is helping that. My husband

Gregg, aged 57 at the time of diagnosis and I decided together that

surgery was not the way he was going to treat his prostate cancer.

We read copious amounts of material and concluded that the cure rates

with surgery are no better than with the best radition techniques.

It is a myth that removing the prostate removes any further risk.

Sorry Mr. Pender, but you are just wrong about that.

Gregg completed his proton beam therapy 15 months ago at Loma

University Medical Center in southern CA. His sexual function remains

very good, and he has no urinary issues at all. The vast majority of

former proton patients do not.

He did experience some very mild, short lived rectal bleeding which

seems to have ceased, as were told in all probability that it would.

His PSA is heading south. We are vigilant about telling newly

diagnosed men and their partners about proton radiation as an option.

I know that others here have mentioned it and you seemed to be aware

of it.

It sounds as though you have good insurance. We are Kaiser members

and felt so strongly that this was the best course of action that we

borrowed money and paid out of pocket. No regrets about doing that.

You are lucky to have a partner to support you, but I would encourage

you and your wife to get as informed as possible and not make a fear,

based decision.

Did your urlogist rule out bladder cancer as the sourse of the

bleeding? Gregg was diagnosed with bladder cancer 15 months before

the prostate cancer. The most common symptom is blood in the urine

with no pain.

Laurel

PS: the post surgery issues of impotence and incontinence are indeed

very daunting for a great number of men. I read messages from them

everyday on the prostate pointers lists.

>

> Hello everyone. I am Steve and have recently been diagnosed with an

> early stage cancer of the prostate. I am wanting to make a wise

> decision on treatment. I talked with my urologist last week and will

> be at the radiation therapy clinic Friday. After 7 major surgeries,

I

> did not want to go through another. I have PC on both sides of my

> family - dad and 2 of his brothers and 2 of mom's brothers. I am

> emphatic about getting the annual check-up. This year, the PSA went

> from 1.3 in March '07 to 2.5 in Feb '08 and 3.8 in March (was

passing

> blood in the urine. Typical-right?). The Dr. stated that it was very

> early in development and highly treatable. At 56, this is not hard

to

> accept. I have helped others deal with problems as I am a pastor and

> have dealt with cancer, heart attack families, deaths of accident

> victims, Alzheimers, and many other issues.

>

> What I would like would be honest opinions on radiation,

cryotherapy,

> and surgery (cancer is highly localized). I am reading on-line

> articles, researching through the library, and reading all

brochures I

> can get my hands on.

>

> Thank you for your honesty.

> Steve

>

[Guest guest]

Hi Steve,

Welcome and sorry you have to be here. Your attitude sounds really

great and I am sure that your faith is helping that. My husband

Gregg, aged 57 at the time of diagnosis and I decided together that

surgery was not the way he was going to treat his prostate cancer.

We read copious amounts of material and concluded that the cure rates

with surgery are no better than with the best radition techniques.

It is a myth that removing the prostate removes any further risk.

Sorry Mr. Pender, but you are just wrong about that.

Gregg completed his proton beam therapy 15 months ago at Loma

University Medical Center in southern CA. His sexual function remains

very good, and he has no urinary issues at all. The vast majority of

former proton patients do not.

He did experience some very mild, short lived rectal bleeding which

seems to have ceased, as were told in all probability that it would.

His PSA is heading south. We are vigilant about telling newly

diagnosed men and their partners about proton radiation as an option.

I know that others here have mentioned it and you seemed to be aware

of it.

It sounds as though you have good insurance. We are Kaiser members

and felt so strongly that this was the best course of action that we

borrowed money and paid out of pocket. No regrets about doing that.

You are lucky to have a partner to support you, but I would encourage

you and your wife to get as informed as possible and not make a fear,

based decision.

Did your urlogist rule out bladder cancer as the sourse of the

bleeding? Gregg was diagnosed with bladder cancer 15 months before

the prostate cancer. The most common symptom is blood in the urine

with no pain.

Laurel

PS: the post surgery issues of impotence and incontinence are indeed

very daunting for a great number of men. I read messages from them

everyday on the prostate pointers lists.

>

> Hello everyone. I am Steve and have recently been diagnosed with an

> early stage cancer of the prostate. I am wanting to make a wise

> decision on treatment. I talked with my urologist last week and will

> be at the radiation therapy clinic Friday. After 7 major surgeries,

I

> did not want to go through another. I have PC on both sides of my

> family - dad and 2 of his brothers and 2 of mom's brothers. I am

> emphatic about getting the annual check-up. This year, the PSA went

> from 1.3 in March '07 to 2.5 in Feb '08 and 3.8 in March (was

passing

> blood in the urine. Typical-right?). The Dr. stated that it was very

> early in development and highly treatable. At 56, this is not hard

to

> accept. I have helped others deal with problems as I am a pastor and

> have dealt with cancer, heart attack families, deaths of accident

> victims, Alzheimers, and many other issues.

>

> What I would like would be honest opinions on radiation,

cryotherapy,

> and surgery (cancer is highly localized). I am reading on-line

> articles, researching through the library, and reading all

brochures I

> can get my hands on.

>

> Thank you for your honesty.

> Steve

>

[Guest guest]

Steve, FYI, don't rule out brachytherapy. I had psa 5.5, gleason 3+3, tumor stage t1c. I opted for brachytherapy and had great results. No incontinence, mild ED corrected by Viagra. Had it done in Chicago last Sept. It may or may not be for you, but I think you ought to at least consider it. With your pca numbers, you would probably be considered a good candidate.

Ken

Re: New to the group

Steve Jordan,Yes, another Steve here. Is it a name curse or something? As for the Gleason score, I do not hear a lot of things well so I may have misunderstood his numbers and I forgot to ask. New at all of this. I think he said either 5 or 6 and 2+3 or 3+3. I know the PSA is NOT the deciding factor. However, my doctor subscribes to the age factor and number on the PSA and said that at my age he uses 2.5 as the borderline. My DRE was done well before the blood was drawn and I had a bit of trouble with ED, so I had no sex or ejaculation to cause the rise. I also am aware that blood in the urine is not a symptom of prostate trouble only, but when he scoped my urethra out, he said that there was evidence of a problem with the prostate. BTW, the DRE was normal. There was other evidence pointing to a problem and the symptoms were classic for pros trouble. I was on Levaquin for almost 4 weeks, which should have helped, but the PSA number rose instead.Thank you for your input. I am printing out the responses I get so my wife can read them as well. I will let everyone know what my decision is as soon as I decide. Thanks to all.Steve