Re: Priscilla Questions re: Have you had a colonoscopy?

August 26, 2004

My surgeon told my daughter who is 30 that she is not too young to start now.

Karima

Priscilla Questions re: Have you had a

colonoscopy?

It's a hard message since of course people don't like talking about such

things

but it is necessary.

As for the 20 year recommendation. What is your experience with this?

First with 20 year olds actually asking for it (Let's face it they still are

into that IT WILL NEVER HAPPEN TO ME phase)

secondly with Dr.s willing to do it that young.

Also what should those of us with kids under 20 be doing now?

Lastly I was wondering for those of you with young kids and cancer

What if anything does your area offer for them

Is there childcare available (no or minimal cost) for them should you need to

accompany you to treatment?

August 28, 2004

Yes it is unfair. As for the prostate screening tests for the men...I'm not too

sure about that but I'm going to look into it now that you've mentioned it. If

they are not getting the time off then they should.

Dianne

erica wrote:

Wow Dianne.. thats really unfair. What about for the male workers? Do they get

time off for prostate cancer screenings?

Just curious

a

dianne herring wrote:

I also wish Colon Cancer got as much publicity as Breast Cancer does. I work for

the State of NY and they give all female employees 4 hrs off to get a Mammogram

done. I asked if they gave any time off for having a colonoscopy done and they

said no. I was so mad because it's not fair. I then called my Union (CSEA) and

asked them how to go about getting time off for a colonoscopy and they promised

me that they will negotiate it into our next contract or at least have a

Labor/Management meeting about it. I guess time will tell but I'm not going to

let them forget either.

As for the early screenings being done at 20 for family members with the

hereditary colon cancer I think it's a good idea. My brother's kids have already

been screened once they turned 25. His youngest is now 16 and I'm constantly

reminding her as to what symptoms she should be aware of and she wants a

colonoscopy done at 20. She was 6 when my brother died but she remembers how

sick her father was.

Hopefully Colon Cancer will soon get the attention it deserves.

Dianne

Priscilla Savary wrote:

Kids under 20 who get colon cancer but DON'T have a family history are so

extroidinarily rare that it wouldn't make sense to do screening on them. Nearly

all of the kids who have gotten colon cancer have a hereditary type (or more

likely polyps - since these group usually has a strong hereditary history and

start surveillance even as early as 5 and 6 years old - so don't get the cancer,

just the polyps). The gap is when a family truly has no idea and in adoption

situations because you usually don't know any of the adopted child's medical

history.

Remember though, not too long ago this same age group of woman did not get PAP

smears and did not ask for mammograms. Now, because of so many young woman

getting breast cancer they are demanding mammograms.

Colon screening will get its day too -- if we decided it will and push for it.

Already one other country - I believe Scotland - recommends screening to begin

at 20. The USA should be a leader in ending colon cancer. People aren't dumb

cattle. IF we get there attention - among the billions of ads shot at them all

day, everywhere, all the time, and IF we put forth the message in plan

understandable language, people will get it. We need to get their attention.

We need to make the message powerful, and clear, and then call for action.

-Priscilla

CCNetwork

___

" Snoopy Walks to End Colon Cancer "

October 17th, 2004, Washington DC, 5k Walk/Run

www.colorectal-cancer.net (Information)

https://www.racepacket.com/snoop.html (Online Registration)

>

> Date: 2004/08/27 Fri AM 12:21:49 EDT

> To: <colon_cancer_support >

> Subject: Re: Priscilla Questions re: Have you had a

colonoscopy?

>

August 28, 2004

I'm not going to let the Union forget about this. This is something I feel

strongly about and I will get the contact information for you. Thank you for

your help.

Dianne

Priscilla Savary wrote:

So don't let the union forget. Remind them constantly. Give me the contact

information and allow me to right a letter that includes your story in it to

them. Let's keep them to their promise. 4 hours off for cancer screening is

what they should be doing.

They will only do it if we gang up on them. Push. It's worth it.

-Priscilla

CCNetwork

____________

" Snoopy Walks to End Colon Cancer "

October 17th, 2004, Washington DC, 5k Walk/Run

www.colorectal-cancer.net (Information)

https://www.racepacket.com/snoop.html (Online Registration)

>

> Date: 2004/08/27 Fri PM 03:17:39 EDT

> To: colon_cancer_support

> Subject: Re: Re: Priscilla Questions re: Have you had

a colonoscopy?

>

August 29, 2004

That's why CCNetwork always pushes for 4 hours off for cancer screening - not

just colon cancer. Ultimately the point for all of us is that we don't want to

lose anyone to any cancer. The fortunate thing with colon cancer is that we can

really make that a reality today.

-Priscilla

>

> Date: 2004/08/28 Sat PM 04:52:44 EDT

> To: colon_cancer_support

> Subject: Re: Re: Priscilla Questions re: Have you had

a colonoscopy?

>

August 29, 2004

I am rather cynical myself. And completely agree - there is no big money in

prevention - of course, unless we are screening huge amounts of people. And

then the issue is that the money is going then to companies that aren't getting

it now rather than to the big pharmas.

But remember, the cases of PAP smears, breast cancer and AIDS are examples of

just ordinary people making it happen despite big business not wanting it to

come about (or at least not supporting it because it hurts their bottom line).

-Priscilla

>

> Date: 2004/08/28 Sat AM 09:28:51 EDT

> To: colon_cancer_support

> Subject: Re: Re: Priscilla Questions re: Have you had

a colonoscopy?

>

August 29, 2004

I am rather cynical myself. And completely agree - there is no big money in

prevention - of course, unless we are screening huge amounts of people. And

then the issue is that the money is going then to companies that aren't getting

it now rather than to the big pharmas.

But remember, the cases of PAP smears, breast cancer and AIDS are examples of

just ordinary people making it happen despite big business not wanting it to

come about (or at least not supporting it because it hurts their bottom line).

-Priscilla

>

> Date: 2004/08/28 Sat AM 09:28:51 EDT

> To: colon_cancer_support

> Subject: Re: Re: Priscilla Questions re: Have you had

a colonoscopy?

>

August 29, 2004

I am rather cynical myself. And completely agree - there is no big money in

prevention - of course, unless we are screening huge amounts of people. And

then the issue is that the money is going then to companies that aren't getting

it now rather than to the big pharmas.

But remember, the cases of PAP smears, breast cancer and AIDS are examples of

just ordinary people making it happen despite big business not wanting it to

come about (or at least not supporting it because it hurts their bottom line).

-Priscilla

>

> Date: 2004/08/28 Sat AM 09:28:51 EDT

> To: colon_cancer_support

> Subject: Re: Re: Priscilla Questions re: Have you had

a colonoscopy?

>

August 30, 2004

Priscilla,

You guys to great work and all who suffer from the disease or

care for people who suffer appreciate what you do - it is

monumental. At no time should anybody construe my postings to be

against colon cancer prevention. Fact of the matter is that I had

all of my brothers, nephews, and nieces go to have a colonoscopy (we

have strong hereditary trait but not HNPCC), and they are in their

30's (I was diagnosed at 40 and according to the surgeon, probably

had the tumor since 35 or so). Also keenly aware of docs

unwillingness to " pull the trigger " - my doc knew my family history,

saw the presentation of classic symptoms (bleeding+smaller

stools+weight loss), even looked with a protoscope, and still put off

a colonscopy for six months (the tumor was only 6cm in). Needless to

say, I have a grudge with docs. If a doc refuses to do screening in

these circumstances, which, as I have said, are at the periphery or

clearly fall under currently recongnized criteria, then it is time to

change.

My concern is that emotions can sometimes get in the way of

argument and we have to stay practical, or we will lose. For

example, comparing prostate, or for that matter, breast cancer

screening with " gold standard " colon cancer screening is, to a

certain extent, like comparing apples and oranges, because the

previous cost so much less and are much less invasive. One can get

screened for breast cancer in the libary parking lot. I think there

is a while to go before we can do this for colonoscopies. These

comparisons all change when an effective, cheaper solution, like you

cite with stool DNA, comes along.

I still think that docs have to be targeted. Nobody should get

it as wrong as my doc did. That is not fair.

We have to talk about it. The amount of money spent on research

for the other members of the " Big Four " (colon, prostate, breast, and

lung) is not inline with disease effect in the US. And as you've

seen me post before, it is way, way out of line when compared with

AIDS; maybe even Parkinson's Disease, too. But the reason that they

get funded better is because they talk about their disease. In NY,

the Senate Majority Leader, Joe Bruno, got Prostate Cancer. Now, we

have option to donate money via the NYS Tax Form to Prostate Cancer

research. Not fair, but he talked about it and nobody stepped

forward to say, " Well, what about colon cancer, senator - more people

in New York will die from that than from Prostate cancer. " The fact

that the most effective drug for colon cancer is 5-FU, which was

approved 45 years ago, is shameful in this age.

Just to inform, the stats I used in previous postings are from

the survey of ~15,000 health care providers that was published in the

NE Journal of Medicine in 1997 (addressed relative risk in terms of

family involvement) and the statistics databases from the NIH and

CDC, which break frequency down by age group; they were the best that

I could find. If you can provide others, I'd be interested.

Although the system might be overtaxed, I don't see the connection

between age and nonreporting; it seems to me that nonreporting would

be equally distributed across age groups.

To finish - people who have colon cancer have to come out of

their shells and speak up - not just in this forum, but to people in

the public that can make a difference. But I opine that when we

speak up, we will be more successful if we battle with hard facts and

truly doable goals.

v/r

Joe

> I am rather cynical myself. And completely agree - there is no big

money in prevention - of course, unless we are screening huge amounts

of people. And then the issue is that the money is going then to

companies that aren't getting it now rather than to the big pharmas.

>

> But remember, the cases of PAP smears, breast cancer and AIDS are

examples of just ordinary people making it happen despite big

business not wanting it to come about (or at least not supporting it

because it hurts their bottom line).

>

> -Priscilla

>

> >

> > From: erica <erica259@y...>

> > Date: 2004/08/28 Sat AM 09:28:51 EDT

> > To: colon_cancer_support

> > Subject: Re: Re: Priscilla Questions re:

Have you had a colonoscopy?

> >

>

August 30, 2004