I received this nasty note from Anne Kasper

[Guest guest]

I just woke up and was checking my email and found this. I CANNOT allow anyone

to upset my members. There were posts that mentioned that people were

uncomfortable with her in the group and I also got private emails. As you all

can read in the group I DID send her an email saying she was removed and why.

Anyone that wants to try what ever she is pushing is free to do so and can

contact her privately but I could not allow her to continue to upset anyone.

Hugs

nne

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

and nne:

You did not have the nerve to email me. I am sorry you have no courage to allow

women the truth. You will have to live with that throughout your lives, and

answer to your God when the time comes. MARK MY WORDS.

NO ONE WAS UPSET EXCEPT YOU. You are trying to create an upset when there was

NONE. Do you work for the AMA? Just wondering. How dare you publicly malign

me before the group. I should sue you for your actions. NO ONE COMPLAINED.

People were listening and you SHUT DOWN THEIR RIGHT TO LISTEN DOWN. hAVE HAD

MANY WOMEN EMAIL ME PERSONALLY FOR INFORMATION AND ADVICE. You are destroying

their right to education. You have no right to do that, ever.

You have done more damage to these women than anyone I know. I would strongly

recommend you " clear my name " before I have counsel contact you. Google my name

and know I am unfraid of anyone who assaults women's rights.

Blissed be, Annie

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

[Guest guest]

nne - I believe that you did the right thing. This woman

definately had an agenda here, to sell something - which is okay

with me but she quotes statistics that are blatently false and makes

statements like " radiation CAUSES cancer " - that's inflamatory and

could and would scare the heck out of anyone! Like I said before,

she is entitled to her opinion but I agree with you that THIS is not

the forum for that. If any of our members want to contact her, I'm

sure she can be found " outside " this group. Thank you for taking

care of this and I'm sorry that you had to wake up to such a hateful

message.

Hugs!

Ellen

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned

that people were uncomfortable with her in the group and I also got

private emails. As you all can read in the group I DID send her an

email saying she was removed and why. Anyone that wants to try what

ever she is pushing is free to do so and can contact her privately

but I could not allow her to continue to upset anyone.

> Hugs

> nne

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> and nne:

>

> You did not have the nerve to email me. I am sorry you have no

courage to allow women the truth. You will have to live with that

throughout your lives, and answer to your God when the time comes.

MARK MY WORDS.

>

> NO ONE WAS UPSET EXCEPT YOU. You are trying to create an upset

when there was NONE. Do you work for the AMA? Just wondering. How

dare you publicly malign me before the group. I should sue you for

your actions. NO ONE COMPLAINED. People were listening and you

SHUT DOWN THEIR RIGHT TO LISTEN DOWN. hAVE HAD MANY WOMEN EMAIL ME

PERSONALLY FOR INFORMATION AND ADVICE. You are destroying their

right to education. You have no right to do that, ever.

>

> You have done more damage to these women than anyone I know. I

would strongly recommend you " clear my name " before I have counsel

contact you. Google my name and know I am unfraid of anyone who

assaults women's rights.

>

> Blissed be, Annie

>

>

> Breast Cancer Patients Soul Mates for Life

> http://www.geocities.com/chucky5741/breastcancerpatients.html

> BreastCancerStories.com

> http://www.breastcancerstories.com/content/view/433/161/

> Angel Feather Loomer

> www.angelfeatherloomer.blogspot.com

> Check out my other ornaments at

> www.geocities.com/chucky5741/bcornament.html

> Lots of info and gifts at:

> www.cancerclub.com

>

>

[Guest guest]

Well I got ANOTHER email from her demanding to see the emails I got from

individuals. I should have saved them but didn't but I believe the posts speak

for themselves. I delete my mail several times a day as I normally get up to

over 100 emails and it continues throughout the day. Thanks for your support. I

have to do what I feel is best for the group.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: I received this nasty note from Anne Kasper

nne - I believe that you did the right thing. This woman

definately had an agenda here, to sell something - which is okay

with me but she quotes statistics that are blatently false and makes

statements like " radiation CAUSES cancer " - that's inflamatory and

could and would scare the heck out of anyone! Like I said before,

she is entitled to her opinion but I agree with you that THIS is not

the forum for that. If any of our members want to contact her, I'm

sure she can be found " outside " this group. Thank you for taking

care of this and I'm sorry that you had to wake up to such a hateful

message.

Hugs!

Ellen

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned

that people were uncomfortable with her in the group and I also got

private emails. As you all can read in the group I DID send her an

email saying she was removed and why. Anyone that wants to try what

ever she is pushing is free to do so and can contact her privately

but I could not allow her to continue to upset anyone.

> Hugs

> nne

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> and nne:

>

> You did not have the nerve to email me. I am sorry you have no

courage to allow women the truth. You will have to live with that

throughout your lives, and answer to your God when the time comes.

MARK MY WORDS.

>

> NO ONE WAS UPSET EXCEPT YOU. You are trying to create an upset

when there was NONE. Do you work for the AMA? Just wondering. How

dare you publicly malign me before the group. I should sue you for

your actions. NO ONE COMPLAINED. People were listening and you

SHUT DOWN THEIR RIGHT TO LISTEN DOWN. hAVE HAD MANY WOMEN EMAIL ME

PERSONALLY FOR INFORMATION AND ADVICE. You are destroying their

right to education. You have no right to do that, ever.

>

> You have done more damage to these women than anyone I know. I

would strongly recommend you " clear my name " before I have counsel

contact you. Google my name and know I am unfraid of anyone who

assaults women's rights.

>

> Blissed be, Annie

>

>

> Breast Cancer Patients Soul Mates for Life

> http://www.geocities.com/chucky5741/breastcancerpatients.html

> BreastCancerStories.com

> http://www.breastcancerstories.com/content/view/433/161/

> Angel Feather Loomer

> www.angelfeatherloomer.blogspot.com

> Check out my other ornaments at

> www.geocities.com/chucky5741/bcornament.html

> Lots of info and gifts at:

> www.cancerclub.com

>

>

[Guest guest]

ne,

This is another member who believes you did the right thing. I had bad

feelings about Ann from the beginning and had even asked a friend (and

moderator) from another group (without giving names or group name)

what she thought I should do. I wished I had spoken up sooner though

but wasn't sure if I was the only one feeling this way. Next time I

will speak sooner.

Val

[Guest guest]

Thanks Val. I received another email from here demanding I allow her to join. I

will not. You, my ladies, are my priority and if anyone feels threatened I need

to address the issue.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: I received this nasty note from Anne Kasper

ne,

This is another member who believes you did the right thing. I had bad

feelings about Ann from the beginning and had even asked a friend (and

moderator) from another group (without giving names or group name)

what she thought I should do. I wished I had spoken up sooner though

but wasn't sure if I was the only one feeling this way. Next time I

will speak sooner.

Val

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[Guest guest]

Hi nne,

I'd like to add my thanks for being Moderator for this group. It's an

enourmous responsibility - there are so many messages every day in this

group, and I have to admit sometimes it's just overload and I can't read

everyone. Yet you always send a welcome message to every new member and

a supportive message to everyone who needs one.

The danger in Anne's emails is that she seemed to have an agenda to push

her product vs. any other treatment. She did have some valid points, but

overgeneralized things.

It is true that the currently available chemo & radiation therapy have a

>small< risk of secondary cancer among their side effects. E.g., I was

told there was a <1% chance I could develop secondary leukemia after

Adriamycin. I had to weigh this against the 15% reduction in recurrence

if I took Adriamycin. (The 15% might not be exactly right - chemo brain

strikes again!)

My point is, we need to be as informed as possible in order to decide

the treatment that is right for us. All this information can be very

overwhelming, and very dangerous if half-truths or general statements

are thrown out.

Also, doctors make their recommendations based on the current

information they have (or at least that's how it should be done -

incompetent doctors are another story). One year out from the start of

my treatment (Adriamycin/Cytoxan + Herceptin), there are new studies

that Taxotere/Carboplatin + Herceptin may be as beneficial without the

heart + Leukemia risk.

I asked my oncologist about this new study, and she said it was

promising, but more data & followup was needed before they could

determine whether it was a better regime than AC+H. She did say there

was enough data that she could recommend it to women who had heart

conditions.

Women come to this group in a very vulnerable state, seeking alot of

answers. I hope I didn't stir things up more - just wanted everyone to

be aware there are truths and half-truths.

take care,

[Guest guest]

I think for me I didnt feel threatened, just that I didnt like hearing

that Radiation causes cancer. My first thought after browsing her

profile and website, that she infact probably never had cancer, so the

remark didnt come across as gentle as I probably wanted to hear.

For me, even though I can not compare myself to other in the situation

I am in, I still have fear, so the remark to me was harsh. I worry each

day if I am doing the right thing. As I stated in my previous post

about being so tired, I worry that I have cancer heading off to some

place else. I just got the feeling she doenst understand. Although

knowing what healthy things are available, as an adult, I feel I can

make that choice when dealing with people such as her and her website.

I guess what I am saying is,

1. If a person doesnt have cancer or know someone (which she talked

like she did), they shouldnt be apart of the group

2. No product selling, the links to her website on her profile is enough

3. We have to let others voice their opinions whether they are right or

wrong. We all have the minds to control what we do with our bodies and

what alternative choices we want to take.

4. Maybe, just maybe, there is something someone can offer that might

help something in our lives. Maybe its just to help with my fatigue?

Maybe its to help with side affects of Chemo?

5. If the group memebers find someone is being pushy , then dont

respond or DO respond by saying your peace. Then let it be, dont

contact, dont order anything.

Its kind of like the guy who had pictures to show us. Some were

against, some liked them, most found they didnt reflect true feelings

and emotions.

What I liked, is that he tried!

hugs

char

[Guest guest]

>

> Thanks Val. I received another email from here demanding I allow her

to join. I will not. You, my ladies, are my priority and if anyone

feels threatened I need to address the issue.

> Hugs

> nne

Belonging to a group is a priveledge, not a " right " . To DEMAND that

she be allowed back in just shows the true intent behind it all. Just

my humble opinion.

Val

[Guest guest]

You did nothing wrong. I need for you ladies to let me know if something is

bothering you.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: Re: I received this nasty note from Anne Kasper

Hi nne,

I'd like to add my thanks for being Moderator for this group. It's an

enourmous responsibility - there are so many messages every day in this

group, and I have to admit sometimes it's just overload and I can't read

everyone. Yet you always send a welcome message to every new member and

a supportive message to everyone who needs one.

The danger in Anne's emails is that she seemed to have an agenda to push

her product vs. any other treatment. She did have some valid points, but

overgeneralized things.

It is true that the currently available chemo & radiation therapy have a

>small< risk of secondary cancer among their side effects. E.g., I was

told there was a <1% chance I could develop secondary leukemia after

Adriamycin. I had to weigh this against the 15% reduction in recurrence

if I took Adriamycin. (The 15% might not be exactly right - chemo brain

strikes again!)

My point is, we need to be as informed as possible in order to decide

the treatment that is right for us. All this information can be very

overwhelming, and very dangerous if half-truths or general statements

are thrown out.

Also, doctors make their recommendations based on the current

information they have (or at least that's how it should be done -

incompetent doctors are another story). One year out from the start of

my treatment (Adriamycin/Cytoxan + Herceptin), there are new studies

that Taxotere/Carboplatin + Herceptin may be as beneficial without the

heart + Leukemia risk.

I asked my oncologist about this new study, and she said it was

promising, but more data & followup was needed before they could

determine whether it was a better regime than AC+H. She did say there

was enough data that she could recommend it to women who had heart

conditions.

Women come to this group in a very vulnerable state, seeking alot of

answers. I hope I didn't stir things up more - just wanted everyone to

be aware there are truths and half-truths.

take care,

------------------------------------------------------------------------------

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[Guest guest]

nne-

I totally agree with you. I didn't receive any e-mails from Anne- but

was upset with her stating radiation causes cancer after I just

completed them. The way I look at it you have to kill cancer with

comething- whether chemo or rads. Afterwards you can continue killing or

preventing cancer by changing your lifestyle and diet- which I started

to do. I stopped using all products with paraben- since I was hormonal

positive, eating more whole grains and cutting out diet soda and

artifical sweetners. That was my choice- I just have to feel pro-active.

I just didn't like anyone telling me that I am poisoning myself. I just

want to thank you ladies for all of your support. The site really helped

me get through a rough time

Hugs

Eileen-DCIS-Stage O-estrogen and progesterone +, lumpectomy 10/23, rads

completed today

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned that

people were uncomfortable with her in the group and I also got private

emails. As you all can read in the group I DID send her an email saying

she was removed and why. Anyone that wants to try what ever she is

pushing is free to do so and can contact her privately but I could not

allow her to continue to upset anyone.

> Hugs

> nne

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> and nne:

>

> You did not have the nerve to email me. I am sorry you have no courage

to allow women the truth. You will have to live with that throughout

your lives, and answer to your God when the time comes. MARK MY WORDS.

>

> NO ONE WAS UPSET EXCEPT YOU. You are trying to create an upset when

there was NONE. Do you work for the AMA? Just wondering. How dare you

publicly malign me before the group. I should sue you for your actions.

NO ONE COMPLAINED. People were listening and you SHUT DOWN THEIR RIGHT

TO LISTEN DOWN. hAVE HAD MANY WOMEN EMAIL ME PERSONALLY FOR INFORMATION

AND ADVICE. You are destroying their right to education. You have no

right to do that, ever.

>

> You have done more damage to these women than anyone I know. I would

strongly recommend you " clear my name " before I have counsel contact

you. Google my name and know I am unfraid of anyone who assaults women's

rights.

>

> Blissed be, Annie

>

>

> Breast Cancer Patients Soul Mates for Life

> http://www.geocities.com/chucky5741/breastcancerpatients.html

> BreastCancerStories.com

> http://www.breastcancerstories.com/content/view/433/161/

> Angel Feather Loomer

> www.angelfeatherloomer.blogspot.com

> Check out my other ornaments at

> www.geocities.com/chucky5741/bcornament.html

> Lots of info and gifts at:

> www.cancerclub.com

>

>

[Guest guest]

Re: Re: I received this nasty note from Anne Kasper

Hi nne,

I'd like to add my thanks for being Moderator for this group. It's an

enourmous responsibility - there are so many messages every day in this

group, and I have to admit sometimes it's just overload and I can't read

everyone. Yet you always send a welcome message to every new member and

a supportive message to everyone who needs one.

The danger in Anne's emails is that she seemed to have an agenda to push

her product vs. any other treatment. She did have some valid points, but

overgeneralized things.

It is true that the currently available chemo & radiation therapy have a

>small< risk of secondary cancer among their side effects. E.g., I was

told there was a <1% chance I could develop secondary leukemia after

Adriamycin. I had to weigh this against the 15% reduction in recurrence

if I took Adriamycin. (The 15% might not be exactly right - chemo brain

strikes again!)

My point is, we need to be as informed as possible in order to decide

the treatment that is right for us. All this information can be very

overwhelming, and very dangerous if half-truths or general statements

are thrown out.

Also, doctors make their recommendations based on the current

information they have (or at least that's how it should be done -

incompetent doctors are another story). One year out from the start of

my treatment (Adriamycin/Cytoxan + Herceptin), there are new studies

that Taxotere/Carboplatin + Herceptin may be as beneficial without the

heart + Leukemia risk.

I asked my oncologist about this new study, and she said it was

promising, but more data & followup was needed before they could

determine whether it was a better regime than AC+H. She did say there

was enough data that she could recommend it to women who had heart

conditions.

Women come to this group in a very vulnerable state, seeking alot of

answers. I hope I didn't stir things up more - just wanted everyone to

be aware there are truths and half-truths.

take care,

[Guest guest]

nne

You did the right thing ! Anne Kasper was making me upset..She is only

out to get more money in her pocket book..She doesn't care about any of

us..

Thank you..

All The Best

C..Xo

[Guest guest]

I feel I did the right thing. She said I will be hearing from her lawyer. I

never said one nasty thing about her in the group so I am not going to worry

about it. What will be will be. I do how ever have all the emails she sent me..

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: I received this nasty note from Anne Kasper

nne

You did the right thing ! Anne Kasper was making me upset..She is only

out to get more money in her pocket book..She doesn't care about any of

us..

Thank you..

All The Best

C..Xo

------------------------------------------------------------------------------

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[Guest guest]

nne<

That's why we love you so much...you protect us!

[Guest guest]

Wanda, honey...

You've got us all!

Best,

[Guest guest]

Hi All,

I haven't posted much, but I read everything. Sometimes people start posting

things and the hair on the back of my neck starts standing up. This was my

experience with Anne K. I just ignored everything she sent and it didn't

occur to me to complain as I simply thought she was wrong and I'm not into

creating new and challenging situations for myself. (This includes old

friends who " don't get it " ). I'm sorry nne, I certainly am behind you

on this. Sometimes leaders get thrown under the bus simply because they

lead. You are a wonderful leader/moderator. Keep up the good work.

Maya

[Guest guest]

Thank you Maya. Since the founder is unable to care for the group since 1998 a

short time after it started he has handed the reins over to me and trusts my

judgement completely.. He was a breast surgeon in training and is now a very

busy surgeon with his own practice.

Being a founder or cofounder has some problems but being able to help you ladies

by keeping the site going and hopefully free from any problems it is well worth

the few problems that do arise

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: I received this nasty note from Anne Kasper

Hi All,

I haven't posted much, but I read everything. Sometimes people start posting

things and the hair on the back of my neck starts standing up. This was my

experience with Anne K. I just ignored everything she sent and it didn't

occur to me to complain as I simply thought she was wrong and I'm not into

creating new and challenging situations for myself. (This includes old

friends who " don't get it " ). I'm sorry nne, I certainly am behind you

on this. Sometimes leaders get thrown under the bus simply because they

lead. You are a wonderful leader/moderator. Keep up the good work.

Maya

[Guest guest]

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned

that people were uncomfortable with her in the group and I also got

private emails.

nne,

I also applaud your decision to remove Anne Kasper from the list. I

haven't been on the list very long, but I felt that hers, of all the

posts I read, were pushing an ideological agenda. And I found myself

grinding my teeth at the half-truths, and bad inferences.

When reading Anne's posts, I was reminded of a French philosopher

who said something like: " You should always follow those searching

for the truth - and *run* from those who have found it. "

I had spent some time thinking about writing the following. Even

though you have booted Anne Kasper from the list, I thought I'd

still post it.

I am a professional statistician with a PhD from one of the big-name

stats depts, and in some of my work I have had to do research on

some types of cancers. I have friends who do research in cancer

epidemiology and in statistical genetics. My PhD advisor is one of

the Big Names in statistical genetics, although that is not what I

studied under him. I did engineering failure analysis, which is

essentially the same as biostatistical survival analysis, same math

models with different factors. In other words, I know how build the

statistics model to determine how long we're likely to survive after

our treatments.

All that is by way of establishing my credentials that if I am not

an MD, I have some experience in the field. People like me are the

ones who crunch the numbers for the MDs (we're often the second

authors on those research papers ;-)).

And what can I say from my professional experience? Cancer is *not*

a single disease. Even with breast cancer, we have the ER+/-, etc.

What characterizes the diseases known collectively as cancer is out-

of-control cell growth, and *lots* of things can make that happen.

People might remember that Kaposi's sarcoma, an otherwise rare

cancer, is associated with AIDS. Mesothelioma (which I did do some

research on) needs asbestos exposure. *Women* with HIV (I did

research in that area for a couple years) are prone to cervical

cancer, because cervical cancer is strongly associated with the

human papillomavirus (HPV), and their immune system isn't often

isn't strong enough to fight that. *BUT* - not every woman with HIV

and HPV gets cervical cancer. Not every person exposed to asbestos

gets mesothelioma. Not every smoker gets lung or larynx or tongue or

throat cancer. Not every person with lung cancer is was a smoker (I

can't remember their names, but the late quadriplegic Superman's

wife lately died of lung cancer, and she was *not* a smoker.)

So it is irresponsible of someone to say that X *causes* cancer,

implying that cancer is a certainty after X. It is just as

irresponsible to of someone to say that Y *cures* cancer for all

time. To criticize the doctors for being *scientifically honest* and

saying this is the best they know at this point in time is, to me,

outrageous. It's asking the doctors to lie. For my part, I would run

from any MD who claims that s/he knows *definitively* how to cure

cancer, or how to prevent it. The *best* they can say is that they

know some factors that may reduce or increase risks *on average* -

and definitely they cannot say anything for specific individuals. Or

they can say that this treatment regimen helps people with certain

aspects of the disease survive longer - or shorter - *on average* -

but again not for specific individuals. And, I can say that as a

statistician who knows how all those models work.

Doctors know a lot more about breast cancer than they did when my

aunt died from it 45 years ago. And I view that they *admit* there

is still a lot more to learn as a positive thing, not a negative.

And I'd run from anyone who said s/he was 100% certain of my

ultimate outcome as being arrogant or ignorant or both.

What the doctors know for now is that the treatments *are*

essentially poison of some type - chemo or radiation - and that the

cancer cells are more affected by this poison than normal cells.

Usually the reason for this is that cancer cells divide more rapidly

than 'normal' cells, but other rapidly-dividing cells (e.g, hair

follicles, blood cells, digestive tract, etc.) are affected as well,

hence the nasty side-effects. The hope is that the cancer cells are

more sensitive to the poison than the other cells. Radiation

treatment operates on a similar idea. But no good doctor would claim

only the cancer cells are affected adversely - only more. I hope

that someday better treatments can be found. But this is the state

of our knowledge at this time.

I would hope that any MD suggesting radiation treatment has given

the patient information to let them know that there is some chance

the treatment might induce some other cancer, but that the studies

show that that is very small compared to the benefit of killing the

cancer cells by radiation. That should have been in informed consent

forms.

There is a story that has helped shape my attitude, told me by a

good friend of mine. It may or may not help other people as well.

Her mother was in Palestine back in WWII, in the British Army. Then

she fought the British Army as a guerilla for the independence of

Israel after WWII. One day she got onto a packed bus and the only

empty seat was next to a window. She asked the man seated on the

aisle to move over so she could sit down. He said that he didn't

want to sit near the window because he was a new father, and was

afraid of the bus being attacked in an ambush. He thought it would

be unsafe to sit by the window. So my friend's mother, obviously

considering herself a brave soldier, agreed to sit by the window

instead.

THe bus *was* attacked. And *he* was killed. My friend's mother, who

sat by the window, died just a few years ago, aged 90.

So what's the point of the story? I don't discount that there are

likely good things from keeping healthy by avoiding or consuming

certain things in the diet, or exercising more, or trying to keep a

positive attitude, etc. We need to do the best we can to be protect

ourselves. But there's *no guarantee*. The numbers say these may

*reduce risk* - but the risk is never zero. I'm not trying to be a

doomsayer and that nothing works. I'm just saying that there are no

certainties here or elsewhere in life.

Except for death and taxes, of course :-)

I think worrying too much about doing the 'right thing' to make sure

cancer never occurs or reoccurs can distract us from living life.

We can only do the best we can. And hope.

I'll get down from my soapbox now. And apologize if anyone finds my

philosophy more hurtful than helpful. After all - individuals do

vary...

Finally, I want to thank this group, because even though I have and

can understand all the papers from PubMed I could ever want on the

subject, it was very useful to know about the post-surgical

camisole, that I'm not going to be languishing helplessly in bed for

weeks after surgery, etc. There are limits to the academic

knowledge :-)

Best to all,

Ann

[Guest guest]

Thanks for your support Ann.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: I received this nasty note from Anne Kasper

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned

that people were uncomfortable with her in the group and I also got

private emails.

nne,

I also applaud your decision to remove Anne Kasper from the list. I

haven't been on the list very long, but I felt that hers, of all the

posts I read, were pushing an ideological agenda. And I found myself

grinding my teeth at the half-truths, and bad inferences.

When reading Anne's posts, I was reminded of a French philosopher

who said something like: " You should always follow those searching

for the truth - and *run* from those who have found it. "

I had spent some time thinking about writing the following. Even

though you have booted Anne Kasper from the list, I thought I'd

still post it.

I am a professional statistician with a PhD from one of the big-name

stats depts, and in some of my work I have had to do research on

some types of cancers. I have friends who do research in cancer

epidemiology and in statistical genetics. My PhD advisor is one of

the Big Names in statistical genetics, although that is not what I

studied under him. I did engineering failure analysis, which is

essentially the same as biostatistical survival analysis, same math

models with different factors. In other words, I know how build the

statistics model to determine how long we're likely to survive after

our treatments.

All that is by way of establishing my credentials that if I am not

an MD, I have some experience in the field. People like me are the

ones who crunch the numbers for the MDs (we're often the second

authors on those research papers ;-)).

And what can I say from my professional experience? Cancer is *not*

a single disease. Even with breast cancer, we have the ER+/-, etc.

What characterizes the diseases known collectively as cancer is out-

of-control cell growth, and *lots* of things can make that happen.

People might remember that Kaposi's sarcoma, an otherwise rare

cancer, is associated with AIDS. Mesothelioma (which I did do some

research on) needs asbestos exposure. *Women* with HIV (I did

research in that area for a couple years) are prone to cervical

cancer, because cervical cancer is strongly associated with the

human papillomavirus (HPV), and their immune system isn't often

isn't strong enough to fight that. *BUT* - not every woman with HIV

and HPV gets cervical cancer. Not every person exposed to asbestos

gets mesothelioma. Not every smoker gets lung or larynx or tongue or

throat cancer. Not every person with lung cancer is was a smoker (I

can't remember their names, but the late quadriplegic Superman's

wife lately died of lung cancer, and she was *not* a smoker.)

So it is irresponsible of someone to say that X *causes* cancer,

implying that cancer is a certainty after X. It is just as

irresponsible to of someone to say that Y *cures* cancer for all

time. To criticize the doctors for being *scientifically honest* and

saying this is the best they know at this point in time is, to me,

outrageous. It's asking the doctors to lie. For my part, I would run

from any MD who claims that s/he knows *definitively* how to cure

cancer, or how to prevent it. The *best* they can say is that they

know some factors that may reduce or increase risks *on average* -

and definitely they cannot say anything for specific individuals. Or

they can say that this treatment regimen helps people with certain

aspects of the disease survive longer - or shorter - *on average* -

but again not for specific individuals. And, I can say that as a

statistician who knows how all those models work.

Doctors know a lot more about breast cancer than they did when my

aunt died from it 45 years ago. And I view that they *admit* there

is still a lot more to learn as a positive thing, not a negative.

And I'd run from anyone who said s/he was 100% certain of my

ultimate outcome as being arrogant or ignorant or both.

What the doctors know for now is that the treatments *are*

essentially poison of some type - chemo or radiation - and that the

cancer cells are more affected by this poison than normal cells.

Usually the reason for this is that cancer cells divide more rapidly

than 'normal' cells, but other rapidly-dividing cells (e.g, hair

follicles, blood cells, digestive tract, etc.) are affected as well,

hence the nasty side-effects. The hope is that the cancer cells are

more sensitive to the poison than the other cells. Radiation

treatment operates on a similar idea. But no good doctor would claim

only the cancer cells are affected adversely - only more. I hope

that someday better treatments can be found. But this is the state

of our knowledge at this time.

I would hope that any MD suggesting radiation treatment has given

the patient information to let them know that there is some chance

the treatment might induce some other cancer, but that the studies

show that that is very small compared to the benefit of killing the

cancer cells by radiation. That should have been in informed consent

forms.

There is a story that has helped shape my attitude, told me by a

good friend of mine. It may or may not help other people as well.

Her mother was in Palestine back in WWII, in the British Army. Then

she fought the British Army as a guerilla for the independence of

Israel after WWII. One day she got onto a packed bus and the only

empty seat was next to a window. She asked the man seated on the

aisle to move over so she could sit down. He said that he didn't

want to sit near the window because he was a new father, and was

afraid of the bus being attacked in an ambush. He thought it would

be unsafe to sit by the window. So my friend's mother, obviously

considering herself a brave soldier, agreed to sit by the window

instead.

THe bus *was* attacked. And *he* was killed. My friend's mother, who

sat by the window, died just a few years ago, aged 90.

So what's the point of the story? I don't discount that there are

likely good things from keeping healthy by avoiding or consuming

certain things in the diet, or exercising more, or trying to keep a

positive attitude, etc. We need to do the best we can to be protect

ourselves. But there's *no guarantee*. The numbers say these may

*reduce risk* - but the risk is never zero. I'm not trying to be a

doomsayer and that nothing works. I'm just saying that there are no

certainties here or elsewhere in life.

Except for death and taxes, of course :-)

I think worrying too much about doing the 'right thing' to make sure

cancer never occurs or reoccurs can distract us from living life.

We can only do the best we can. And hope.

I'll get down from my soapbox now. And apologize if anyone finds my

philosophy more hurtful than helpful. After all - individuals do

vary...

Finally, I want to thank this group, because even though I have and

can understand all the papers from PubMed I could ever want on the

subject, it was very useful to know about the post-surgical

camisole, that I'm not going to be languishing helplessly in bed for

weeks after surgery, etc. There are limits to the academic

knowledge :-)

Best to all,

Ann

------------------------------------------------------------------------------

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[Guest guest]

I agree with removing her

I am just starting my journey and feel I need the DR's and care I am receiving

I am so confused with all this right now I need true reliable proven information

not someone bashing my only treatment options

Wanda

[Guest guest]

Wanda,

I am so very sorry she upset you and the other ladies. Please try not to let her

upset you. She is gone and not coming back.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: Re: I received this nasty note from Anne Kasper

I agree with removing her

I am just starting my journey and feel I need the DR's and care I am receiving

I am so confused with all this right now I need true reliable proven

information

not someone bashing my only treatment options

Wanda

[Guest guest]

Thank you . Next to Chuck and the kids/grandkids you ladies are my life.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: Re: I received this nasty note from Anne Kasper

nne<

That's why we love you so much...you protect us!

[Guest guest]

nne, I too totally support your decision of banning her. This is a place of

comfort and encouragement and that definately was not in her agenda. She has a

right to her own opinions but needs to choose the right form to voice them and

this is not the place. Too many of us new " sisters " need the support of knowing

we are headed in the right directions and someone to hold our hands, not to go

off on us for following our doctors orders. You do a GREAT job!!! God Bless

you

B

Re: I received this nasty note from Anne Kasper

ne,

This is another member who believes you did the right thing. I had bad

feelings about Ann from the beginning and had even asked a friend (and

moderator) from another group (without giving names or group name)

what she thought I should do. I wished I had spoken up sooner though

but wasn't sure if I was the only one feeling this way. Next time I

will speak sooner.

Val

----------------------------------------------------------

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Version: 7.1.410 / Virus Database: 268.16.12/630 - Release Date: 1/15/2007

[Guest guest]

I agree with Ellen. I don't know whether she was trying to sell things or not.

Just know I was not comfortable with the manner in which she presented

information. I do feel that she has underestimated the intelligience of the

women on this website.

Thanks for providing standards on this website for everyone.

Jan K

Ellen emc_mom4@...> wrote:

nne - I believe that you did the right thing. This woman

definately had an agenda here, to sell something - which is okay

with me but she quotes statistics that are blatently false and makes

statements like " radiation CAUSES cancer " - that's inflamatory and

could and would scare the heck out of anyone! Like I said before,

she is entitled to her opinion but I agree with you that THIS is not

the forum for that. If any of our members want to contact her, I'm

sure she can be found " outside " this group. Thank you for taking

care of this and I'm sorry that you had to wake up to such a hateful

message.

Hugs!

Ellen

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned

that people were uncomfortable with her in the group and I also got

private emails. As you all can read in the group I DID send her an

email saying she was removed and why. Anyone that wants to try what

ever she is pushing is free to do so and can contact her privately

but I could not allow her to continue to upset anyone.

> Hugs

> nne

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> and nne:

>

> You did not have the nerve to email me. I am sorry you have no

courage to allow women the truth. You will have to live with that

throughout your lives, and answer to your God when the time comes.

MARK MY WORDS.

>

> NO ONE WAS UPSET EXCEPT YOU. You are trying to create an upset

when there was NONE. Do you work for the AMA? Just wondering. How

dare you publicly malign me before the group. I should sue you for

your actions. NO ONE COMPLAINED. People were listening and you

SHUT DOWN THEIR RIGHT TO LISTEN DOWN. hAVE HAD MANY WOMEN EMAIL ME

PERSONALLY FOR INFORMATION AND ADVICE. You are destroying their

right to education. You have no right to do that, ever.

>

> You have done more damage to these women than anyone I know. I

would strongly recommend you " clear my name " before I have counsel

contact you. Google my name and know I am unfraid of anyone who

assaults women's rights.

>

> Blissed be, Annie

>

>

> Breast Cancer Patients Soul Mates for Life

> http://www.geocities.com/chucky5741/breastcancerpatients.html

> BreastCancerStories.com

> http://www.breastcancerstories.com/content/view/433/161/

> Angel Feather Loomer

> www.angelfeatherloomer.blogspot.com

> Check out my other ornaments at

> www.geocities.com/chucky5741/bcornament.html

> Lots of info and gifts at:

> www.cancerclub.com

>

>

[Guest guest]

Thank you Jan K. I appreciate your post.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: Re: I received this nasty note from Anne Kasper

I agree with Ellen. I don't know whether she was trying to sell things or not.

Just know I was not comfortable with the manner in which she presented

information. I do feel that she has underestimated the intelligience of the

women on this website.

Thanks for providing standards on this website for everyone.

Jan K

Ellen emc_mom4@...> wrote:

nne - I believe that you did the right thing. This woman

definately had an agenda here, to sell something - which is okay

with me but she quotes statistics that are blatently false and makes

statements like " radiation CAUSES cancer " - that's inflamatory and

could and would scare the heck out of anyone! Like I said before,

she is entitled to her opinion but I agree with you that THIS is not

the forum for that. If any of our members want to contact her, I'm

sure she can be found " outside " this group. Thank you for taking

care of this and I'm sorry that you had to wake up to such a hateful

message.

Hugs!

Ellen

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned

that people were uncomfortable with her in the group and I also got

private emails. As you all can read in the group I DID send her an

email saying she was removed and why. Anyone that wants to try what

ever she is pushing is free to do so and can contact her privately

but I could not allow her to continue to upset anyone.

> Hugs

> nne

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> and nne:

>

> You did not have the nerve to email me. I am sorry you have no

courage to allow women the truth. You will have to live with that

throughout your lives, and answer to your God when the time comes.

MARK MY WORDS.

>

> NO ONE WAS UPSET EXCEPT YOU. You are trying to create an upset

when there was NONE. Do you work for the AMA? Just wondering. How

dare you publicly malign me before the group. I should sue you for

your actions. NO ONE COMPLAINED. People were listening and you

SHUT DOWN THEIR RIGHT TO LISTEN DOWN. hAVE HAD MANY WOMEN EMAIL ME

PERSONALLY FOR INFORMATION AND ADVICE. You are destroying their

right to education. You have no right to do that, ever.

>

> You have done more damage to these women than anyone I know. I

would strongly recommend you " clear my name " before I have counsel

contact you. Google my name and know I am unfraid of anyone who

assaults women's rights.

>

> Blissed be, Annie

>

>

> Breast Cancer Patients Soul Mates for Life

> http://www.geocities.com/chucky5741/breastcancerpatients.html

> BreastCancerStories.com

> http://www.breastcancerstories.com/content/view/433/161/

> Angel Feather Loomer

> www.angelfeatherloomer.blogspot.com

> Check out my other ornaments at

> www.geocities.com/chucky5741/bcornament.html

> Lots of info and gifts at:

> www.cancerclub.com

>

>