Re: Narice future plans/Len

[Guest guest]

I try to state it as " virtually eliminating " or " all but eliminating " . There

are always exceptions. Those cases where the doctor erred - one of the know

problems with the colonoscopy is a percentage of doctors don't bother going all

the way to the end of the colon. Anyone whose polyps are at the end or whose

colon cancer is originating in the appendix would then be missed. There will of

course always be some people who won't get screened. And there are a percentage

of inaccurately read lab results - again another known problem. The gold

standard for lab tests is to have two completely seperate labs do the readings.

However no insurance company will pay for that and who among us can pay for it

ourselves. Even the colonoscopy does not have a 100% pickup rate. But what

would be the case is that there would be a baseline exam to compare changes

against. Enabling those with what are called 'flat polyps' to be picked up more

easily. Flat polyps are just cells that are changing but not forming the

mushroom shaped polyp.

So in both 's husband and Len's case the problem could have been:

- flat polyps that were not detected

- error in lab readings

- errors in the doc actually doing a full colonoscopy

- other unidentified/unknown errors

There has been several studies done where they took cases like both of these -

colonoscopy did not detect cancer but the person had advanced cancer soon after

(months to a year or two later). In the greater percentage of these cases there

was error or the inability to eliminate that error had occured. In the cases

where they identified errors it was - incomplete cscopes, errors in lab readings

and such. In the case of inability to eliminate the possibility of error it was

things such as, documentation was not complete enough to determine that full

colonoscopy was done etc.

Additionally, if the GCC-B1 test was added into the followup of patients who had

colon cancer and became NED (no evidence of disease) then the chances of picking

up otherwise undetectable colon cancer before it starts growing in other organs

becomes much much higher. Remember, the cells spread through either the blood

stream or the lymphatic system or both. This test would pick up all those that

were spreading via the blood stream. A similar test is in development for the

lymphatic system.

An example of what we should be able to expect is pap smear results. When there

is a history of pap smear results, changes or possible changes can be compared

to previous test results to help determine whether changes are actually

occurring. And so, women are encouraged to get pap smears on a very regular

basis, sometimes starting as early as age 16.

Also add in to this the other known preventative and early detection research

that has been done. Not including lifestyle changes such as exercise, weigh

loss, etc. - which only imply that a connection may exist - there are many

things that have been proven. Folic acid, aspirin, berries, mushrroms

(particularly coreolus versicolor and maitake), soy milk and (yes there is a

God) chocolate. Also there is a growing body of evidence that has demonstrated

that coffee may end up in this category as well.

Add in the bodily changes that have shown a great deal of promise in detecting

cancer early or even at the precancerous stages - those studies that have linked

changes in your fingernails, saliva, and other such things. This is all

peer-reviewed published research in major respected medical journals - not the

Noni juice, Mexico therapies and coffee enemas stuff. This is real research.

Approved by the FDA and the NCI. Accepted by the medical profession.

So now imagine how the results might have been if you had a baseline of

colonoscopies done every 5 years starting at age 18. And if your doctor had

examined nail changes and salivia changes on a regular basis to identify

internal health problems at very very early stages.

Will all of this mean that there will be no deaths from colon cancer. Not as

long as we are human. People are fallable. We are not all knowing. We will

probably never know everything that can cause colon cancer. Especially since

the medical research community is largely moving towards the belief that the

causes may be so complex that they cannot be recreated. (Maybe exposure to

asbestos before some other chemical exposure is meaningless but after that

chemical means the beginning of colon cancer growth. Or maybe its a combination

of 4 or 5 things or more. They already have identified that there are at least

7 different paths that colon cancer development follows.)

Not quite 100 years ago polio was killing people at huge rates (although at its

highest it was not as high as colon cancer is). A vaccine was finally developed

that could prevent 100% of polio cases. But some parents in the past few

decades have decided to not let the doctor give their children this vaccine -

and so, while on a very small basis - polio has returned to the United States.

Polio was in fact less complicated than colon cancer. But the experts all agree

that colonoscopies have the potential for nearly and maybe completely

eliminating colon cancer. Even the head of the American Cancer Society was

quoted as saying so. They are actually acting on this. But it is a published

quote.

As to symptoms. It is documented that there are no symptoms for nearly all

colon cancer patients until late in stage four. There are signs but not ones

that would stand out and be useful on their own. A few are lucky to have

early symptoms. My sister had all the worst of the symptoms at stage 2 (age 44

with no family history and no risk factors) and therefore is alive and well

today. But the literature states clearly that it is the exception not the rule

to have symptoms before mid to late in stage 4.

This brings up the fact that nearly all of the literature developed for the

general public talks about symptoms, warning signs, and risk factors - when the

first are useless because they happen so late, and the third is only relevant to

less than 20% of colon cancer cases. 80% of colon cancer happens in people with

absolutely no known risk factors. Seems the biggest risk factor is just having

a colon.

This is why we developed our " Why We Believe What We Do Document " . To pull

together the references to that published research and the quotes of the experts

into one compelling document that demonstrates the need for all adults to be

screened. (Although in the beginning the point was to determine whether all

adults should be screened. As the evidence mounted the point changed.)

So then the question remaining is this:

If Len and 's husband are both in the exception to the rule category (and

not in the possible errors in detection categories) what does this mean for

whether screening should or should not be done on all adults starting at age 18?

That is really the question that you must answer in order to fight for this goal

or not. Is the fact that there still may be a few 100 people who get colon

cancer, and maybe even die from colon cancer a reason to not screen all adults

starting at age 18 and continuing every 5 years forward? Those few 100 are no

less valuable. AND there is the catch that if we succeed in getting screening

available to all starting at age 18 AND that results in the ending of colon

cancer for all but a few 100 that turn out to be in a very unique category all

by themselves - the funding will be harder to get to help those few 100. There

is at least a system in place for dealing with that already though. The Office

of Rare and Orphan Diseases is in place and actively working on these type of

situations under the auspices of the National Institute of Health. But wouldn't

it also mean that the arguement could be made that since the research money was

freed up from those 10's of thousands of cases of colon cancer - that it should

not go towards the orphaned cases?

Your thoughts, positve, negative and neutral are critical to this effort.

Naysayers make our knowledge much more accurate. Those who don't just nod and

follow but rather stay and question open up areas that no one of us had thought

to ask about before. I am so grateful to you and all who speak up and ask

questions, state doubts, and point out possible discrepancies, errors, or

oversights. To achieve this great goal we must go into it with eyes wide open.

It is not an easy goal to achieve. Even well stated and documented with their

own words and proofs the political and medical system are not going to one day

say " Oh gee, why didn't we think of that. Today we will all think differently

now. " They will not easily see the reason and the right. People as a whole

dont like change. We resist it like a knee-jerk reaction. Speaking out or

fighting against change without first asking if we would want that change to

happen. In every area of life this is demonstrated over and over again,

century following century. Woman stay with the mate that beats them. Children

love the parent that molests them. Doctors resisted vehemently washing their

hands between patients. (Even though this has proven to have saved the greatest

number of lives far above ANY other medical change or advance.) Religions have

burned and tortured those who called for change. The almighty collective " we "

does not like change. And we will face resistence to making this change.

Funny thing is though. Read about the great changes that have happened through

out history. Resistance grows and grows, often times becoming huge and angry.

This continues right up until the day the change is made. Then shortly

afterwards memorys become faulty and those who were against it are suddenly full

believers. (Can you imagine a doctor operating on a person with the blood from

the previous person still on their hands? Yet they use to. Now they wouldn't

think of it. And it is hard for us to recreate the feeling that existed up

until that change happened.)

I don't pretend that this is easy. I don't pretend that it will happen

overnight. Nor that we can predict what the ultimate outcome will actually be.

But you and I do know that 56,000 people died last year and the year before and

the year before and that many died this year too. And there is no reason to

believe that the number will change much next year.

And knowing this I sleep better at night following a plan for elimination of

this cancer rather than a plan to just inform people and maybe see a few less

deaths.

Priscilla A. Savary

Executive Director

Colorectal Cancer Network

PO Box 182, Kensington MD 20895

psavary@...

www.colorectal-cancer.net

_________

Screening for All. Colon Cancer for None.

ProjectMARCH -- rarely in life do you get a chance to make major change or save

thousands of lives. March 6, 2006 you can.

http://www.colorectal-cancer.net/projectmarch.htm

Re: Narice future plans/Len

Len,

I have to agree with you. While the incidence and

morbidity of colon cancer can be greatly reduced by

increased colonoscopies and removal of polyps, it will

not guarantee the end of the disease. My husband was a

classic example of this. He had had a routine

colonoscopy as part of his annual physical, with

'all-clear' results, only 17 months prior to his

'advanced, inoperable, stage IV diagnosis. He also had

no symptoms until the ones caused by the extensive

liver mets.

H

--- Len Henell wrote:

> Priscilla,

>

> I am not so sure that stopping colon cancer is quite

> as simple as you thought. Just taking out the

> pollips

> is not all there is to it, apparently, because I

> never

> had a pollip and I had colon cancer and now a

> relapse

> 6 years later. My cancer looked more like an ulcer.

>

> It was so different that the surgeon didn't think it

> was cancer at first. He had it biopsied and that's

> how they found out. I had the 5fu chemo after my

> colon resection removed the cancer and 6 " either

> side

> of it, but that didn't stop it from coming back. It

> seems to be persistant. I don't mean to be critical

> but just want your data to be correct.

>

> Len

>

> ---

__________________________________________________