Re: HERS citations

[Guest guest]

>There are no

>prospectively controlled, long term impact studies completed on

>hysterectomy. None for myomectomy either. None currently in progress

>either. Complicates the decision making process, doesn't it?

A quick search unearthed quite a few prospective, randomized studies on the

impact, particularly on fertility, of myomectomy. A PubMed search gave me 33

pages of citations on myo alone, not all prospective, randomized, difficult

to do on a surgical procedure where one has to have informed consent. I also

found as well very early NIH testimony on hysterectomy and its impact (

1993), which of course resulted in physicians being called to task for

routinely performing them. (this was a 5 second web search) Not saying there

is in any way enough study on any of this, but let's not push the pendulum to

the other side and castigate all science with a broad brush or say there are

no studies. there may be no satisfactory studies, but that's a different

issue, it is being studied. The HERS announcement is cause for concern on

many levels. Mainly because it seems they are taking an ultra conservative

stance. However, oftentimes, organizations will do this when the evidence is

not yet in, or they aren't comfy with the evidence at hand. HERS has been

bandied about on this list as if it's the arbitrator of truth on

hysterectomies and now as if they have betrayed us with this announcement.

It's more a castigation of how little lay support there is out there for

fibroid treatment. However, many of the information sites on UAE are from

those doing the procedure itself who have something to gain. I'm not saying

it's not a good procedure, only trying to gain some perspective here. As you

say, Carla, each woman must make these decisions based on all the evidence at

hand. But the help will come in finding the evidence that's out there from

sources who have only objective interest. The side effects reported on UAE,

myomectomy, and lupron all leave something to be desired. The decisions are

rock and hard place decisions for how to treat severe fibroids we all know

this.

So HERS issued this statement, it's not ending the world -- and it may, while

perhaps overstated, allow a better look at all the evidence out there. I

think it needs to be weighed with all the rest. Comparing apples and oranges

on other toxins in the environment will not help. In weighing all the

evidence it's always best to do a Woodward/Bernstein and follow the money.

Who's funding any position, stance, procedure et al? Who benefits financially

from this in any way? Now, this doesn't mean that someone who performs a

procedure is immediately suspect, it does mean that if they are touting it to

the exclusion of anything else and not looking at you as an individual, you

better run. we all know this, which is why we are here.

--Candace

[Guest guest]

>There are no

>prospectively controlled, long term impact studies completed on

>hysterectomy. None for myomectomy either. None currently in progress

>either. Complicates the decision making process, doesn't it?

A quick search unearthed quite a few prospective, randomized studies on the

impact, particularly on fertility, of myomectomy. A PubMed search gave me 33

pages of citations on myo alone, not all prospective, randomized, difficult

to do on a surgical procedure where one has to have informed consent. I also

found as well very early NIH testimony on hysterectomy and its impact (

1993), which of course resulted in physicians being called to task for

routinely performing them. (this was a 5 second web search) Not saying there

is in any way enough study on any of this, but let's not push the pendulum to

the other side and castigate all science with a broad brush or say there are

no studies. there may be no satisfactory studies, but that's a different

issue, it is being studied. The HERS announcement is cause for concern on

many levels. Mainly because it seems they are taking an ultra conservative

stance. However, oftentimes, organizations will do this when the evidence is

not yet in, or they aren't comfy with the evidence at hand. HERS has been

bandied about on this list as if it's the arbitrator of truth on

hysterectomies and now as if they have betrayed us with this announcement.

It's more a castigation of how little lay support there is out there for

fibroid treatment. However, many of the information sites on UAE are from

those doing the procedure itself who have something to gain. I'm not saying

it's not a good procedure, only trying to gain some perspective here. As you

say, Carla, each woman must make these decisions based on all the evidence at

hand. But the help will come in finding the evidence that's out there from

sources who have only objective interest. The side effects reported on UAE,

myomectomy, and lupron all leave something to be desired. The decisions are

rock and hard place decisions for how to treat severe fibroids we all know

this.

So HERS issued this statement, it's not ending the world -- and it may, while

perhaps overstated, allow a better look at all the evidence out there. I

think it needs to be weighed with all the rest. Comparing apples and oranges

on other toxins in the environment will not help. In weighing all the

evidence it's always best to do a Woodward/Bernstein and follow the money.

Who's funding any position, stance, procedure et al? Who benefits financially

from this in any way? Now, this doesn't mean that someone who performs a

procedure is immediately suspect, it does mean that if they are touting it to

the exclusion of anything else and not looking at you as an individual, you

better run. we all know this, which is why we are here.

--Candace

[Guest guest]

Bonnie,

yes, it's difficult to sort through as each study, even on conditions such as

HRT and [fill in the blank] are frought with pros, cons, misinformation and

really good information. The problem with the readily accessible information

available on the internet is that one can be inundated with all of iet, good,

bad, professional, personal anecdotes et al. As a journalist who researches

every day, I find it daunting at best. Right now I'm working on an article

titled " when stats collide " about this very thing. I'm focusing on estrogen

and the fibre reports for the article.

A good resource that will search the medical literature can be found on

Love's website. While a breast cancer avocate, her " PaperChase will turn up

abstracts on nearly any subject. [http://www.susanlovemd.com] I did a quick

fibroid search and found some very good reports on work on myomectomy as well

as UAE. and I only plugged in the term fibroids. MOre specificity would turn

up more. One caution on any research: Abstracts only point a direction. You

need to try and get access to the full studies. Sometimes, the most a

researcher has done is to publish an abstract and may not have gotten it

published in a peer reviewed journal. If there's a peer reviewed journal

citation you can rest easier. .. however, it's always best to try and get to

that journal article as well.

REsearch announcements are often no more than the reports from various

blindmen standing at various ends of an elephant. All parts of a puzzle and

sometimes, as in the case of uterine fibroids, the completed picture is only

fuzzily defined.

--Candace

>Hi Candace,

> I could not agree more.Hers is taking an ultra-conservative stance,but

>most complications

>she is citing have occured,however a list of the same nature could be drawn

>up re:myomectomy.

>Having had an unsuccessful UAE myself,which involved complications I can

>say that the newness of

>the procedure was the biggest problem.

>Most certainly following the money (or prestige) is a good idea.I have

>heard tell that the

>complications from UAE are not being reported as fully as they should.It

>is afterall a cheap and

>quick treatment ,and I get the feeling that there are embo factories out

>there.

>Everyone with our disease is between a rock and a hard place.The Brigham

>and Women's website

>describes fibroids as the most common yet least studied tumor.Their work

>on the genetics of the

>disease is exciting,but for the next generation.

>In any event,UAE may be a very effective treatment for some.surgery for

>others,drugs may just

>tide another woman over to menopause.

>I guess we are all here to struggle through it until a definite treatment

>is found.In making up

>one's mind the most important thing is gathering as much information as

>possible.Sometimes a sort

>of picture emerges and the pros and cons get clearer.Had I done this prior

>to my UAE I would not

>have done it-these fibroids were too big.However,I was swept into a form

>of thinking that is not

>characteristic of me-I wanted to believe and I wanted treatment-that made

>me a good mark.

>Looking forward to hearing what the rest of you guys are thinking.

>Bonnie

>

>

[Guest guest]

Bonnie,

yes, it's difficult to sort through as each study, even on conditions such as

HRT and [fill in the blank] are frought with pros, cons, misinformation and

really good information. The problem with the readily accessible information

available on the internet is that one can be inundated with all of iet, good,

bad, professional, personal anecdotes et al. As a journalist who researches

every day, I find it daunting at best. Right now I'm working on an article

titled " when stats collide " about this very thing. I'm focusing on estrogen

and the fibre reports for the article.

A good resource that will search the medical literature can be found on

Love's website. While a breast cancer avocate, her " PaperChase will turn up

abstracts on nearly any subject. [http://www.susanlovemd.com] I did a quick

fibroid search and found some very good reports on work on myomectomy as well

as UAE. and I only plugged in the term fibroids. MOre specificity would turn

up more. One caution on any research: Abstracts only point a direction. You

need to try and get access to the full studies. Sometimes, the most a

researcher has done is to publish an abstract and may not have gotten it

published in a peer reviewed journal. If there's a peer reviewed journal

citation you can rest easier. .. however, it's always best to try and get to

that journal article as well.

REsearch announcements are often no more than the reports from various

blindmen standing at various ends of an elephant. All parts of a puzzle and

sometimes, as in the case of uterine fibroids, the completed picture is only

fuzzily defined.

--Candace

>Hi Candace,

> I could not agree more.Hers is taking an ultra-conservative stance,but

>most complications

>she is citing have occured,however a list of the same nature could be drawn

>up re:myomectomy.

>Having had an unsuccessful UAE myself,which involved complications I can

>say that the newness of

>the procedure was the biggest problem.

>Most certainly following the money (or prestige) is a good idea.I have

>heard tell that the

>complications from UAE are not being reported as fully as they should.It

>is afterall a cheap and

>quick treatment ,and I get the feeling that there are embo factories out

>there.

>Everyone with our disease is between a rock and a hard place.The Brigham

>and Women's website

>describes fibroids as the most common yet least studied tumor.Their work

>on the genetics of the

>disease is exciting,but for the next generation.

>In any event,UAE may be a very effective treatment for some.surgery for

>others,drugs may just

>tide another woman over to menopause.

>I guess we are all here to struggle through it until a definite treatment

>is found.In making up

>one's mind the most important thing is gathering as much information as

>possible.Sometimes a sort

>of picture emerges and the pros and cons get clearer.Had I done this prior

>to my UAE I would not

>have done it-these fibroids were too big.However,I was swept into a form

>of thinking that is not

>characteristic of me-I wanted to believe and I wanted treatment-that made

>me a good mark.

>Looking forward to hearing what the rest of you guys are thinking.

>Bonnie

>

>

[Guest guest]

Bonnie, Candace, thanks for putting so articulately this dilemma I had UAE

with little research except a few weeks reading this group but wanted a

speedy solution to the pressure from bulky fibroids. So be it. haven't had

pain but will see at end of Jan whether there is shrinkage. thanks for

being here.Jane

[Guest guest]

Bonnie, Candace, thanks for putting so articulately this dilemma I had UAE

with little research except a few weeks reading this group but wanted a

speedy solution to the pressure from bulky fibroids. So be it. haven't had

pain but will see at end of Jan whether there is shrinkage. thanks for

being here.Jane

[Guest guest]

Bonnie,

I'll check these out and more recent info. I'm stymied by the relationship of

estrogen/progest and fibroids. Since fibroids are estrogen eaters, it seems

odd that som many poeple are given BCPs to control bleeding as while they may

rgulate the bleeding for a time, I'd think eventually it will promote fibroid

growth and undermine the disease in the long run.

-Candace

>Candace,I'll check that site,thanks.

>I'm a documentary filmmaker.I did a piece on DES for the National Film

>Board of Canada,and more

>recently on brain damage(an area thick with prejudgements)

>I'm taking Prometrium to control bleeding(not yet diagnosed related to

>fibroids) I'm 49-could

>also be pre-menopausal stuff.Yesterday I received 2 studies from the HERS

>foundation showing a

>relationship between fibroid growth and progesterone.Do you know anything

>about it?These were

>published articles in " Human Reproduction " 1997 and Am J Obstet Gyn

1995.(this

>latter from

>Brigham and Women's)

>Comments?

>Bonnie

[Guest guest]

In a message dated 00-12-28 08:55:17 EST, you write:

<< Candace,

I'd love to know what you make of it.The Harvard study seems to be putting a

lot of their case on

Lupron-add back estrogen does not stop the effects of shrinking the

fibroids.When its add-back

progesterone or progest/estro the fibroids don't shrink.I just want to be

clear that Prometrium

is progesterone-non-synthetic,not at a dose suffucient for birth control.I'm

sure you can see " a

rock and hard place " that I'm in.

I think you've got another message.

Look forward to talking to you again.

Bonnie >>

I think it may emerge that progesterone has a significant part to play in the

growth of fibroids. Studies of the effect of RU-486 on fibroids have shown

that when women took small (25 mg) dosages of this anti-progesterone drug,

their fibroids did shrink. I think the books that tell us that estrogen is

the culprit in fibroid growth may be rewritten in years to come.

[Guest guest]

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=Limits & DB=PubMed

<A

HREF= " http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=Limits & DB=PubMed " >

Entrez-PubMed</A>

Carla,

I just plugged in the word myomectomy and came up with a ton of reports (over

600). One a randomized two year study comparing the morbidity between

myommectomy and hysterectomy. Another from the Netherlands with a median 42

month followup on myomectomy, range 1 - 104 months. Again this is a quick

glance so I'm not even saying these are studies to be used as rubrics. I'm

only saying studies are there. Are there enough? Are they well done? Do they

give us all the answers we need? More than likely they do not.

I'm not in any way defending HERS or saying you are wrong. I find their call

for only reporting *adverse* events suspect. But then I'm suspect of

everything.

I miswrote when I put randomized and prospective together (force of habit) .

however, there are a few there. You're right, in a surgical procedure, that

is a difficult aspect of a trial to put in. The morbidity study was a chart

review. However, done well, chart reviews are not always bad. Depends on the

study team, the docs and what their procedures/hypotheses/methods are.

As you know, weighing the validity of studies is a study unto itself. It's

easy to cull the literature for " hard science " to support nearly any stance.

It's become a new bible.

very best,

--Candace

[Guest guest]

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=Limits & DB=PubMed

<A

HREF= " http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=Limits & DB=PubMed " >

Entrez-PubMed</A>

Carla,

I just plugged in the word myomectomy and came up with a ton of reports (over

600). One a randomized two year study comparing the morbidity between

myommectomy and hysterectomy. Another from the Netherlands with a median 42

month followup on myomectomy, range 1 - 104 months. Again this is a quick

glance so I'm not even saying these are studies to be used as rubrics. I'm

only saying studies are there. Are there enough? Are they well done? Do they

give us all the answers we need? More than likely they do not.

I'm not in any way defending HERS or saying you are wrong. I find their call

for only reporting *adverse* events suspect. But then I'm suspect of

everything.

I miswrote when I put randomized and prospective together (force of habit) .

however, there are a few there. You're right, in a surgical procedure, that

is a difficult aspect of a trial to put in. The morbidity study was a chart

review. However, done well, chart reviews are not always bad. Depends on the

study team, the docs and what their procedures/hypotheses/methods are.

As you know, weighing the validity of studies is a study unto itself. It's

easy to cull the literature for " hard science " to support nearly any stance.

It's become a new bible.

very best,

--Candace

[Guest guest]

hoffmannca@... wrote:

>

>

> >There are no

> >prospectively controlled, long term impact studies completed on

> >hysterectomy. None for myomectomy either. None currently in progress

> >either. Complicates the decision making process, doesn't it?

>

> A quick search unearthed quite a few prospective, randomized studies on the

> impact, particularly on fertility, of myomectomy. A PubMed search gave me 33

> pages of citations on myo alone, not all prospective, randomized, difficult

> to do on a surgical procedure where one has to have informed consent. I also

> found as well very early NIH testimony on hysterectomy and its impact (

> 1993), which of course resulted in physicians being called to task for

> routinely performing them. (this was a 5 second web search) Not saying there

> is in any way enough study on any of this, but let's not push the pendulum to

> the other side and castigate all science with a broad brush or say there are

> no studies. there may be no satisfactory studies, but that's a different

> issue, it is being studied. The HERS announcement is cause for concern on

> many levels. Mainly because it seems they are taking an ultra conservative

> stance. However, oftentimes, organizations will do this when the evidence is

> not yet in, or they aren't comfy with the evidence at hand. HERS has been

> bandied about on this list as if it's the arbitrator of truth on

> hysterectomies and now as if they have betrayed us with this announcement.

> It's more a castigation of how little lay support there is out there for

> fibroid treatment. However, many of the information sites on UAE are from

> those doing the procedure itself who have something to gain. I'm not saying

> it's not a good procedure, only trying to gain some perspective here. As you

> say, Carla, each woman must make these decisions based on all the evidence at

> hand. But the help will come in finding the evidence that's out there from

> sources who have only objective interest. The side effects reported on UAE,

> myomectomy, and lupron all leave something to be desired. The decisions are

> rock and hard place decisions for how to treat severe fibroids we all know

> this.

>

> So HERS issued this statement, it's not ending the world -- and it may, while

> perhaps overstated, allow a better look at all the evidence out there. I

> think it needs to be weighed with all the rest. Comparing apples and oranges

> on other toxins in the environment will not help. In weighing all the

> evidence it's always best to do a Woodward/Bernstein and follow the money.

> Who's funding any position, stance, procedure et al? Who benefits financially

> from this in any way? Now, this doesn't mean that someone who performs a

> procedure is immediately suspect, it does mean that if they are touting it to

> the exclusion of anything else and not looking at you as an individual, you

> better run. we all know this, which is why we are here.

> --Candace

>

>

>

[Guest guest]

hoffmannca@... wrote:

>

>

> >There are no

> >prospectively controlled, long term impact studies completed on

> >hysterectomy. None for myomectomy either. None currently in progress

> >either. Complicates the decision making process, doesn't it?

>

> A quick search unearthed quite a few prospective, randomized studies on the

> impact, particularly on fertility, of myomectomy. A PubMed search gave me 33

> pages of citations on myo alone, not all prospective, randomized, difficult

> to do on a surgical procedure where one has to have informed consent. I also

> found as well very early NIH testimony on hysterectomy and its impact (

> 1993), which of course resulted in physicians being called to task for

> routinely performing them. (this was a 5 second web search) Not saying there

> is in any way enough study on any of this, but let's not push the pendulum to

> the other side and castigate all science with a broad brush or say there are

> no studies. there may be no satisfactory studies, but that's a different

> issue, it is being studied. The HERS announcement is cause for concern on

> many levels. Mainly because it seems they are taking an ultra conservative

> stance. However, oftentimes, organizations will do this when the evidence is

> not yet in, or they aren't comfy with the evidence at hand. HERS has been

> bandied about on this list as if it's the arbitrator of truth on

> hysterectomies and now as if they have betrayed us with this announcement.

> It's more a castigation of how little lay support there is out there for

> fibroid treatment. However, many of the information sites on UAE are from

> those doing the procedure itself who have something to gain. I'm not saying

> it's not a good procedure, only trying to gain some perspective here. As you

> say, Carla, each woman must make these decisions based on all the evidence at

> hand. But the help will come in finding the evidence that's out there from

> sources who have only objective interest. The side effects reported on UAE,

> myomectomy, and lupron all leave something to be desired. The decisions are

> rock and hard place decisions for how to treat severe fibroids we all know

> this.

>

> So HERS issued this statement, it's not ending the world -- and it may, while

> perhaps overstated, allow a better look at all the evidence out there. I

> think it needs to be weighed with all the rest. Comparing apples and oranges

> on other toxins in the environment will not help. In weighing all the

> evidence it's always best to do a Woodward/Bernstein and follow the money.

> Who's funding any position, stance, procedure et al? Who benefits financially

> from this in any way? Now, this doesn't mean that someone who performs a

> procedure is immediately suspect, it does mean that if they are touting it to

> the exclusion of anything else and not looking at you as an individual, you

> better run. we all know this, which is why we are here.

> --Candace

>

>

>

[Guest guest]

hoffmannca@... wrote:

> Bonnie,

> yes, it's difficult to sort through as each study, even on conditions such as

> HRT and [fill in the blank] are frought with pros, cons, misinformation and

> really good information. The problem with the readily accessible information

> available on the internet is that one can be inundated with all of iet, good,

> bad, professional, personal anecdotes et al. As a journalist who researches

> every day, I find it daunting at best. Right now I'm working on an article

> titled " when stats collide " about this very thing. I'm focusing on estrogen

> and the fibre reports for the article.

>

> A good resource that will search the medical literature can be found on

> Love's website. While a breast cancer avocate, her " PaperChase will turn up

> abstracts on nearly any subject. [http://www.susanlovemd.com] I did a quick

> fibroid search and found some very good reports on work on myomectomy as well

> as UAE. and I only plugged in the term fibroids. MOre specificity would turn

> up more. One caution on any research: Abstracts only point a direction. You

> need to try and get access to the full studies. Sometimes, the most a

> researcher has done is to publish an abstract and may not have gotten it

> published in a peer reviewed journal. If there's a peer reviewed journal

> citation you can rest easier. .. however, it's always best to try and get to

> that journal article as well.

>

> REsearch announcements are often no more than the reports from various

> blindmen standing at various ends of an elephant. All parts of a puzzle and

> sometimes, as in the case of uterine fibroids, the completed picture is only

> fuzzily defined.

>

> --Candace

Candace,I'll check that site,thanks.

I'm a documentary filmmaker.I did a piece on DES for the National Film Board of

Canada,and more

recently on brain damage(an area thick with prejudgements)

I'm taking Prometrium to control bleeding(not yet diagnosed related to fibroids)

I'm 49-could

also be pre-menopausal stuff.Yesterday I received 2 studies from the HERS

foundation showing a

relationship between fibroid growth and progesterone.Do you know anything about

it?These were

published articles in " Human Reproduction " 1997 and Am J Obstet Gyn 1995.(this

latter from

Brigham and Women's)

Comments?

Bonnie

>

>

>

>

> >Hi Candace,

> > I could not agree more.Hers is taking an ultra-conservative stance,but

> >most complications

> >she is citing have occured,however a list of the same nature could be drawn

> >up re:myomectomy.

> >Having had an unsuccessful UAE myself,which involved complications I can

> >say that the newness of

> >the procedure was the biggest problem.

> >Most certainly following the money (or prestige) is a good idea.I have

> >heard tell that the

> >complications from UAE are not being reported as fully as they should.It

> >is afterall a cheap and

> >quick treatment ,and I get the feeling that there are embo factories out

> >there.

> >Everyone with our disease is between a rock and a hard place.The Brigham

> >and Women's website

> >describes fibroids as the most common yet least studied tumor.Their work

> >on the genetics of the

> >disease is exciting,but for the next generation.

> >In any event,UAE may be a very effective treatment for some.surgery for

> >others,drugs may just

> >tide another woman over to menopause.

> >I guess we are all here to struggle through it until a definite treatment

> >is found.In making up

> >one's mind the most important thing is gathering as much information as

> >possible.Sometimes a sort

> >of picture emerges and the pros and cons get clearer.Had I done this prior

> >to my UAE I would not

> >have done it-these fibroids were too big.However,I was swept into a form

> >of thinking that is not

> >characteristic of me-I wanted to believe and I wanted treatment-that made

> >me a good mark.

> >Looking forward to hearing what the rest of you guys are thinking.

> >Bonnie

> >

> >

>

>

>

[Guest guest]

hoffmannca@... wrote:

> Bonnie,

> yes, it's difficult to sort through as each study, even on conditions such as

> HRT and [fill in the blank] are frought with pros, cons, misinformation and

> really good information. The problem with the readily accessible information

> available on the internet is that one can be inundated with all of iet, good,

> bad, professional, personal anecdotes et al. As a journalist who researches

> every day, I find it daunting at best. Right now I'm working on an article

> titled " when stats collide " about this very thing. I'm focusing on estrogen

> and the fibre reports for the article.

>

> A good resource that will search the medical literature can be found on

> Love's website. While a breast cancer avocate, her " PaperChase will turn up

> abstracts on nearly any subject. [http://www.susanlovemd.com] I did a quick

> fibroid search and found some very good reports on work on myomectomy as well

> as UAE. and I only plugged in the term fibroids. MOre specificity would turn

> up more. One caution on any research: Abstracts only point a direction. You

> need to try and get access to the full studies. Sometimes, the most a

> researcher has done is to publish an abstract and may not have gotten it

> published in a peer reviewed journal. If there's a peer reviewed journal

> citation you can rest easier. .. however, it's always best to try and get to

> that journal article as well.

>

> REsearch announcements are often no more than the reports from various

> blindmen standing at various ends of an elephant. All parts of a puzzle and

> sometimes, as in the case of uterine fibroids, the completed picture is only

> fuzzily defined.

>

> --Candace

Candace,I'll check that site,thanks.

I'm a documentary filmmaker.I did a piece on DES for the National Film Board of

Canada,and more

recently on brain damage(an area thick with prejudgements)

I'm taking Prometrium to control bleeding(not yet diagnosed related to fibroids)

I'm 49-could

also be pre-menopausal stuff.Yesterday I received 2 studies from the HERS

foundation showing a

relationship between fibroid growth and progesterone.Do you know anything about

it?These were

published articles in " Human Reproduction " 1997 and Am J Obstet Gyn 1995.(this

latter from

Brigham and Women's)

Comments?

Bonnie

>

>

>

>

> >Hi Candace,

> > I could not agree more.Hers is taking an ultra-conservative stance,but

> >most complications

> >she is citing have occured,however a list of the same nature could be drawn

> >up re:myomectomy.

> >Having had an unsuccessful UAE myself,which involved complications I can

> >say that the newness of

> >the procedure was the biggest problem.

> >Most certainly following the money (or prestige) is a good idea.I have

> >heard tell that the

> >complications from UAE are not being reported as fully as they should.It

> >is afterall a cheap and

> >quick treatment ,and I get the feeling that there are embo factories out

> >there.

> >Everyone with our disease is between a rock and a hard place.The Brigham

> >and Women's website

> >describes fibroids as the most common yet least studied tumor.Their work

> >on the genetics of the

> >disease is exciting,but for the next generation.

> >In any event,UAE may be a very effective treatment for some.surgery for

> >others,drugs may just

> >tide another woman over to menopause.

> >I guess we are all here to struggle through it until a definite treatment

> >is found.In making up

> >one's mind the most important thing is gathering as much information as

> >possible.Sometimes a sort

> >of picture emerges and the pros and cons get clearer.Had I done this prior

> >to my UAE I would not

> >have done it-these fibroids were too big.However,I was swept into a form

> >of thinking that is not

> >characteristic of me-I wanted to believe and I wanted treatment-that made

> >me a good mark.

> >Looking forward to hearing what the rest of you guys are thinking.

> >Bonnie

> >

> >

>

>

>

[Guest guest]

Candace wrote:

So HERS issued this statement, it's not ending the world -- and it may, while

perhaps overstated, allow a better look at all the evidence out there. I

think it needs to be weighed with all the rest. Comparing apples and oranges

on other toxins in the environment will not help. In weighing all the

evidence it's always best to do a Woodward/Bernstein and follow the money.

Who's funding any position, stance, procedure et al? Who benefits financially

from this in any way? Now, this doesn't mean that someone who performs a

procedure is immediately suspect, it does mean that if they are touting it to

the exclusion of anything else and not looking at you as an individual, you

better run. we all know this, which is why we are here.

--Candace

Candace, you refer to the www.uterinearteryembolization.com site as a

" statement " . If it were only a statement issued by HERS, I would not be so

concerned. But it is a site which will be seen by thousands of women searching

for information about treatment for their uterine fibroids. Many, many of these

women are not medically sophisticated and will not recognize that this site is

totally slanted toward a negative presentation of UAE. It will not occur to

them to say " how many women out of the total group of women suffered each of

these potential negative outcomes? " " How much of what I'm seeing here is

interpretation of what actually happened? " " What impact did factors other than

the procedure itself have on the outcome? " Instead, they will see her list of

references and be impressed, as I would have been a couple years ago before I

began to learn how to judge medical evidence. Your arguments, I think, assume a

higher level of education and judgement by the viewers than I have found to be

the norm in my few years of participating in women's bulletin boards and other

Internet groups.

I agree with you that many of the sites currently available on UAE are stricly

commercials by the providers and many of them no more present a accurate picture

of possible negative outcomes than Nora presents of possible positive outcomes.

I think this only underscores the necessity for an organization such as NUFF

which is dedicated to getting a complete and accurate picture of each possible

treatment option out there for women to see. Leonie Finkel

______________________________________

On January 1, 2001, Pillsbury Madison & Sutro LLP and Winthrop, Stimson, Putnam

& will merge to form Pillsbury Winthrop LLP, a global law firm with more

than 860 lawyers operating from 16 locations in North America, Europe and Asia.

Please visit our respective websites using the links below for further

information, or visit our new website at www.pillsburywinthrop.com after January

1, 2001.

Please note that the firm's internet and E-mail domains will change effective

January 1. The new domain will be:

pillsburywinthrop.com

Effective January 1, 2001, attempts to access sites www.pillsburylaw.com and

www.winstim.com will be redirected to www.pillsburywinthrop.com. New e-mail

addresses for Pillsbury Winthrop LLP lawyers (default format

flast@...) will be listed at http://www.pillsburywinthrop.com.

Please update your records. Thank you for your cooperation and please refer any

questions to the contact number below.

This message, together with any attachments, is intended only for the

use of the individual or entity to which it is addressed and may contain

information that is legally privileged, confidential and exempt from

disclosure. If you are not the intended recipient, you are hereby

notified that any dissemination, distribution, or copying of this

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this message in error, please notify the original sender (or the WSPR

Help Desk) immediately by telephone () or by return

E-mail and delete the message, along with any attachments, from

your computer. Thank you.

[Guest guest]

Candace wrote:

So HERS issued this statement, it's not ending the world -- and it may, while

perhaps overstated, allow a better look at all the evidence out there. I

think it needs to be weighed with all the rest. Comparing apples and oranges

on other toxins in the environment will not help. In weighing all the

evidence it's always best to do a Woodward/Bernstein and follow the money.

Who's funding any position, stance, procedure et al? Who benefits financially

from this in any way? Now, this doesn't mean that someone who performs a

procedure is immediately suspect, it does mean that if they are touting it to

the exclusion of anything else and not looking at you as an individual, you

better run. we all know this, which is why we are here.

--Candace

Candace, you refer to the www.uterinearteryembolization.com site as a

" statement " . If it were only a statement issued by HERS, I would not be so

concerned. But it is a site which will be seen by thousands of women searching

for information about treatment for their uterine fibroids. Many, many of these

women are not medically sophisticated and will not recognize that this site is

totally slanted toward a negative presentation of UAE. It will not occur to

them to say " how many women out of the total group of women suffered each of

these potential negative outcomes? " " How much of what I'm seeing here is

interpretation of what actually happened? " " What impact did factors other than

the procedure itself have on the outcome? " Instead, they will see her list of

references and be impressed, as I would have been a couple years ago before I

began to learn how to judge medical evidence. Your arguments, I think, assume a

higher level of education and judgement by the viewers than I have found to be

the norm in my few years of participating in women's bulletin boards and other

Internet groups.

I agree with you that many of the sites currently available on UAE are stricly

commercials by the providers and many of them no more present a accurate picture

of possible negative outcomes than Nora presents of possible positive outcomes.

I think this only underscores the necessity for an organization such as NUFF

which is dedicated to getting a complete and accurate picture of each possible

treatment option out there for women to see. Leonie Finkel

______________________________________

On January 1, 2001, Pillsbury Madison & Sutro LLP and Winthrop, Stimson, Putnam

& will merge to form Pillsbury Winthrop LLP, a global law firm with more

than 860 lawyers operating from 16 locations in North America, Europe and Asia.

Please visit our respective websites using the links below for further

information, or visit our new website at www.pillsburywinthrop.com after January

1, 2001.

Please note that the firm's internet and E-mail domains will change effective

January 1. The new domain will be:

pillsburywinthrop.com

Effective January 1, 2001, attempts to access sites www.pillsburylaw.com and

www.winstim.com will be redirected to www.pillsburywinthrop.com. New e-mail

addresses for Pillsbury Winthrop LLP lawyers (default format

flast@...) will be listed at http://www.pillsburywinthrop.com.

Please update your records. Thank you for your cooperation and please refer any

questions to the contact number below.

This message, together with any attachments, is intended only for the

use of the individual or entity to which it is addressed and may contain

information that is legally privileged, confidential and exempt from

disclosure. If you are not the intended recipient, you are hereby

notified that any dissemination, distribution, or copying of this

message,or any attachment, is strictly prohibited. If you have received

this message in error, please notify the original sender (or the WSPR

Help Desk) immediately by telephone () or by return

E-mail and delete the message, along with any attachments, from

your computer. Thank you.

[Guest guest]

Candace,

I'd love to know what you make of it.The Harvard study seems to be putting a lot

of their case on

Lupron-add back estrogen does not stop the effects of shrinking the

fibroids.When its add-back

progesterone or progest/estro the fibroids don't shrink.I just want to be clear

that Prometrium

is progesterone-non-synthetic,not at a dose suffucient for birth control.I'm

sure you can see " a

rock and hard place " that I'm in.

I think you've got another message.

Look forward to talking to you again.

Bonnie

hoffmannca@... wrote:

> Bonnie,

> I'll check these out and more recent info. I'm stymied by the relationship of

> estrogen/progest and fibroids. Since fibroids are estrogen eaters, it seems

> odd that som many poeple are given BCPs to control bleeding as while they may

> rgulate the bleeding for a time, I'd think eventually it will promote fibroid

> growth and undermine the disease in the long run.

>

> -Candace

>

>

>

> >Candace,I'll check that site,thanks.

> >I'm a documentary filmmaker.I did a piece on DES for the National Film

> >Board of Canada,and more

> >recently on brain damage(an area thick with prejudgements)

> >I'm taking Prometrium to control bleeding(not yet diagnosed related to

> >fibroids) I'm 49-could

> >also be pre-menopausal stuff.Yesterday I received 2 studies from the HERS

> >foundation showing a

> >relationship between fibroid growth and progesterone.Do you know anything

> >about it?These were

> >published articles in " Human Reproduction " 1997 and Am J Obstet Gyn

> 1995.(this

> >latter from

> >Brigham and Women's)

> >Comments?

> >Bonnie

>

>

>

[Guest guest]

Candace,

I'd love to know what you make of it.The Harvard study seems to be putting a lot

of their case on

Lupron-add back estrogen does not stop the effects of shrinking the

fibroids.When its add-back

progesterone or progest/estro the fibroids don't shrink.I just want to be clear

that Prometrium

is progesterone-non-synthetic,not at a dose suffucient for birth control.I'm

sure you can see " a

rock and hard place " that I'm in.

I think you've got another message.

Look forward to talking to you again.

Bonnie

hoffmannca@... wrote:

> Bonnie,

> I'll check these out and more recent info. I'm stymied by the relationship of

> estrogen/progest and fibroids. Since fibroids are estrogen eaters, it seems

> odd that som many poeple are given BCPs to control bleeding as while they may

> rgulate the bleeding for a time, I'd think eventually it will promote fibroid

> growth and undermine the disease in the long run.

>

> -Candace

>

>

>

> >Candace,I'll check that site,thanks.

> >I'm a documentary filmmaker.I did a piece on DES for the National Film

> >Board of Canada,and more

> >recently on brain damage(an area thick with prejudgements)

> >I'm taking Prometrium to control bleeding(not yet diagnosed related to

> >fibroids) I'm 49-could

> >also be pre-menopausal stuff.Yesterday I received 2 studies from the HERS

> >foundation showing a

> >relationship between fibroid growth and progesterone.Do you know anything

> >about it?These were

> >published articles in " Human Reproduction " 1997 and Am J Obstet Gyn

> 1995.(this

> >latter from

> >Brigham and Women's)

> >Comments?

> >Bonnie

>

>

>

[Guest guest]

Jane,

Shrinkage may take a while,depending on the fibroid.I had very big ones that

showed no shrinkage

on MRI for quite some time and kapow,one in particular went down by half.

Things may work out okay for you.Keep in touch

Bonnie

ladyjeanne@... wrote:

> Bonnie, Candace, thanks for putting so articulately this dilemma I had UAE

> with little research except a few weeks reading this group but wanted a

> speedy solution to the pressure from bulky fibroids. So be it. haven't had

> pain but will see at end of Jan whether there is shrinkage. thanks for

> being here.Jane

>

>

>

[Guest guest]

Jane,

Shrinkage may take a while,depending on the fibroid.I had very big ones that

showed no shrinkage

on MRI for quite some time and kapow,one in particular went down by half.

Things may work out okay for you.Keep in touch

Bonnie

ladyjeanne@... wrote:

> Bonnie, Candace, thanks for putting so articulately this dilemma I had UAE

> with little research except a few weeks reading this group but wanted a

> speedy solution to the pressure from bulky fibroids. So be it. haven't had

> pain but will see at end of Jan whether there is shrinkage. thanks for

> being here.Jane

>

>

>

[Guest guest]

>Again, please cite the source. I know of none and would like to read

>the documentation published on these clinical trials.

Again, plug in myomectomy and you'll get all I got.

The study was in the December issue of the American Journal of Obstetrics

and Gynecology " Comparability of perioperative morbidity between abdominal

myomectomy and hysterectomy for women with uterine leiomyomas " (Sawin et

al)

This weekend, I'll devote more time to unearthing more as I'm on deadline

right now and we'll sort through it. I'll see if indeed there are any UAE

versus myo versus hyst. probably not and will more than likely be a chart

review, retrospective if there is. However, that would be a start and often

those sorts of studies lead to more formal studies. But if they use similar

population cohorts you get a good feel for the various procedural outcomes.

--Candace

[Guest guest]

>Again, please cite the source. I know of none and would like to read

>the documentation published on these clinical trials.

Again, plug in myomectomy and you'll get all I got.

The study was in the December issue of the American Journal of Obstetrics

and Gynecology " Comparability of perioperative morbidity between abdominal

myomectomy and hysterectomy for women with uterine leiomyomas " (Sawin et

al)

This weekend, I'll devote more time to unearthing more as I'm on deadline

right now and we'll sort through it. I'll see if indeed there are any UAE

versus myo versus hyst. probably not and will more than likely be a chart

review, retrospective if there is. However, that would be a start and often

those sorts of studies lead to more formal studies. But if they use similar

population cohorts you get a good feel for the various procedural outcomes.

--Candace

[Guest guest]

>A new paper that I hadn't had the opportunity to read yet. But

>still, not prospective or randomized. Sorry.

>carla

Carla,

Look I didn't say it was prospective/randomized. I was again only responding

to your saying there were no trials and you said prospective trials. A

further search of the literature will show other trials/studies. Again, I'm

not trying to undermine your expertise or say you're wrong.

The brief/quick search i did was only in reaction, knee-jerk at best at a

statement you made saying *none*. There are other new ones there too. Again

I'm not saying they have anything new, good, whatever to say, I'm just saying

they are there. I never intended to embark on a oneupsmanship of research,

nor did I mean to in any way usurp your knowledge, expertise.

I wish you all well and a very prosperous and healthy New Year. As I'm in a

deadline crunch I'll be silent for the next few days.

Candace

[Guest guest]

>A new paper that I hadn't had the opportunity to read yet. But

>still, not prospective or randomized. Sorry.

>carla

Carla,

Look I didn't say it was prospective/randomized. I was again only responding

to your saying there were no trials and you said prospective trials. A

further search of the literature will show other trials/studies. Again, I'm

not trying to undermine your expertise or say you're wrong.

The brief/quick search i did was only in reaction, knee-jerk at best at a

statement you made saying *none*. There are other new ones there too. Again

I'm not saying they have anything new, good, whatever to say, I'm just saying

they are there. I never intended to embark on a oneupsmanship of research,

nor did I mean to in any way usurp your knowledge, expertise.

I wish you all well and a very prosperous and healthy New Year. As I'm in a

deadline crunch I'll be silent for the next few days.

Candace

[Guest guest]

hoffmannca@... wrote:

>A quick search unearthed quite a few prospective, randomized

studies on the

>impact, particularly on fertility, of myomectomy. A PubMed search

gave me 33

>pages of citations on myo alone, not all prospective, randomized,

difficult

>to do on a surgical procedure where one has to have informed consent.

I'm sorry. Prospectively controlled, long term impact studies?

Please list those citations Candace. Pages of citations showing published

papers is not indicative that even a single given paper was based on a

prospectively controlled, long term impact study -- which is what HERS

is indicating is necessary to evaluate UAE. And if you know of ANY

prospective clinical trial that looks at hysterectomy or myomectomy (any

form) beyond the 5 year mark, I would love to read it. I'm fairly

confident, however, that it doesn't exist -- but I am very open to

being proven wrong on this as I really would like to be pleasantly surprised

that such research does indeed exist.

Prospective "randomized" study on myomectomy? How would that have

been accomplished? What was it randomized against? Can you

produce those citations too? 33 pages of citations? I just

want to read a single paper that is a prospective, randomized clinical

trial on myomectomy. Preferably one that follows patients for more

than 180 days -- but it would truly be good to read about any prospective,

randomized clinical trial on myomectomy.

BTW, the funding issue is an interesting one to raise. Who funds

HERS? Who benefits from myomectomy referrals that come from HERS?

Why are some gynecologists former doctors on her list -- but now crossed

off? Why won't she explain to women how she acquires the names of

doctors she refers women to? Why won't she explain why she doesn't

recommend certain doctors? Just how does a doctor get on her "list"?

Why won't she answer these questions when women ask?

Wouldn't it make more sense to teach women how to find a good doctor

for themselves? How to evaluate credentials, do background checks,

use doctor finders, ask questions that will help them determine a better

physician choice from the get go? There's a lot to learn in

choosing a physician and it's not an easy process either -- but certainly

more beneficial to learn this prior to treatment so that it can be applied

over the long haul of one's medical needs, wouldn't you think? I

don't know. I know I'm biased regarding how I view this business

of doctor referrals. Too many women call NUFF and "just want a name"

and it makes me really uncomfortable to "just do that" because I know it

is filled with potential for problems. Sometimes I do give out names

-- but always in the context of how the woman can evaluate the doctor for

themselves and find another one should this one not suit them. But

it still makes me uncomfortable.

In addition, NUFF receives a lot of email and phone calls from women

asking why Dr. Stanley West isn't on the HERS myomectomy doctor list....he

seems to have a lot of good references and I've never heard a single woman

indicate they had a bad outcome from this physician -- so why isn't he

on the HERS "list"? How should I know? No one that I know seems

to have an answer to that question and my own correspondence with Nora

over this issue goes unanswered. But, I can tell you from my research

that there was a lawsuit filed a few years ago involving Vicki Hufnagel,

Nora Coffey, a Dranov and Stanley West over copyrights to the material

used in the book "The Hysterectomy Hoax." A $5 million dollar lawsuit

that went nowhere but dragged through the court for over a year ending

with Hufnagel paying Dranov and West court costs. (I'd give you the

URL citation -- but it is only accessible online via PACER -- a national

database of court records that requires formal registration with the government

and costs money to access. It also takes a couple of weeks to even

get an access password via snail mail.)

"Money" is most certainly an interesting issue to bring up amidst all

of this -- but how do any of us know the true motivations behind what drives

any single individual? Somewhere along the treatment path road

we have to throw everything we know aside and simply trust the decision

we made and the physician before us, don't we? Where I draw the line

of information collection before I "trust" probably isn't going to be the

same as anyone else so "trusting" a referral from someone just isn't adequate

for me. Perhaps it is for others though. I don't know.

Also, chemicals are chemicals. Whether they go directly in your

body via some medical procedure or land there due to your work environment,

air emissions, or ground or water contamination or even by your own personal,

over the counter purchases via taking herbal remedies -- chemicals are

chemicals. All have impact in one way or another and all generally

involve choices we make along the way. No so "apple and oranges"

in my book. How do I know that the choice I made to work in a chemically

laden environment (BTW, the chemical that finally took me out of the fabrication

plant was an acetate -- something that also happens to be used in the development

of synthetic progestins) wasn't responsible for the onset of my fibroids?

I don't.

Finally, I don't think that listing as a citation the IARC abstract

is merely a "conservative" stance. I think it's a deliberate attempt

to associate PVA with cancer. How many women are going to read that

abstract listing and know where to find the text on the internet?

How many are going to immediately assume there is a connection to cancer

simply because it's listed in the HERS bib on UAE? Sorry, I don't

see any point behind this minimal listing of bib items EXCEPT to highlight

the negative and draw a picture for women that UAE is a very, very bad

treatment choice.

I'm thoroughly dismayed over the directive behind this educational effort

and the way in which HERS has chosen to present the information to women.

I simply do not understand it. HERS has been a leading force in helping

many women avoid hysterectomy in this nation -- a positive force that has

served to educate women and keep this issue out there in the media's face

and before the public eye. I'm terribly disappointed to see the HERS

web page on UAE go online and even more disappointed in this organization

which has done so much for women for so many years. Dismayed.

Disappointed. Simply don't know what to think.

Furthermore, in terms of a registry, SCVIR and CIRREF has been extremely

proactive in setting this in motion. They've listened to the women

who've undergone this procedure (UAE) and moved to spend a few million

to set up an independent collection (Duke Clinical Research Institute is

coordinating the data collection) of data from patients.

http://www.scvir.org/surveys/uae/index.html (scroll down to read

about how the registry will be implemented)

I don't see gynecological groups doing this for hysteroscopy or laparoscopy

-- as endoscopy for reproductive disease has only been around about the

same amount of time as UAE for fibroids. And it's certainly never

occurred for hysterectomy or myomectomy or ablation or myolysis or ????

It's just never been done before. Planning and acquiring funding

for this registry has taken a few years -- as does most good clinical research

plans -- but it has certainly been put together at lightspeed compared

to the development of a registry and the tracking of clinical outcome for

any other treatment option. If HERS had chosen to contact SCVIR and

ask questions directly of that professional group she would have learned

a great deal about this registry and UAE. I don't see interventional

radiologists shirking responsibilities for data collection. At all.

And see little need for HERS to set up this independent collection of only

negative outcome.

Finally, in reviewing the "Adverse Effects" lists for UAE appearing

on the HERS page, did anyone but me note that many of the items identified

could also be listed for myomectomy? Were some of the items listed

truly adverse effects of UAE? Is vaginal expulsion of a fibroid an

adverse effect? Failure to shrink fibroids? How is that an

adverse effect? It's a NON effect that indicates the procedure didn't

work, isn't it? Increased uterine and fibroid volume? From

UAE? Or, from the procedure not working? The list is confusing

to me -- but probably caught my eye even more than the norm since I put

together similar lists for each treatment option for my book. I think

I put fibroid regrowth as an adverse effect of myomectomy and a doctor

questioned me on how, precisely, is that an adverse effect of the procedure?

Well, it isn't. It's simply indicative of an imperfect procedure

incapable of completely resolving the fibroid issue. I removed it

from the adverse effect list and discussed the issue separately.

Severe, persistent pain requiring use of narcotics? So, myomectomy

and hysterectomy are painless procedures not requiring drugs for pain control?

Also, she forgot a few items. Pulmonary embolism, kidney failure,

sciatic nerve injury...of course, all of those items apply to myomectomy

and hysterectomy as well.

Sigh. What's the point of the HERS web page again? Truly,

I simply do not understand the motivation behind it and I am seriously

disappointed in HERS for taking this directive. Now what?

carla