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Advocates for Better Screening of Young Patients

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Hi all,

I read the post recently about the fact that there are many of us youngish people on here with colo-rectal cancer. I wanted to post about being advocates for better screening for young people.

Is anyone on here actively actively advocating for better screening for young people? I tried to go onto to the Colon Cancer Alliance web page to find out info about this, but didn't have much luck. I might try e-mailing someone there.

I would like to put an end to young people with colon cancer getting misdiagnosed with hemmorhoids. If you have blood in your stool at any age... it should mean that you are automatically scheduled for a COLONOSCOPY !!!!!
I wonder what the actual increase in cost would be anyways? How much are colonoscopies? How would doing more test on young people, compare with the price of treating me, now a Stage IV patient who is having chemotherapy, radiation and 2 surgeries plus more if I have complications.

My understanding is that if caught early, you can often simply have laproscopic surgery and no need for chemo and radiation.

Arrghhh..vent vent

Anyone out there gotten answers for these questions and are advocating for change?

-Maria

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Maria -

Check out: http://www.colonclub.org

- SpongeBob

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Cool..thanks a lot
I checked it out...just what I'm looking for.

VegasMan
Posts: 2
Joined: Jun 2005

Amen brother...

At 45 I was originally diagnosed with internal rhoids and then told that I should try using "Witch Hazel". As it turned out it was stage III CRC.

I'll never sign with an HMO again!

CAMaura
Posts: 719
Joined: Feb 2005

Hi Maria!

The Sponge-Boy is on the mark with his link. The girls at the ColonClub are working hard to bring the condition the the forefront of conversation - and I am all for it. There is a stigma with colon cancer...the hush-factor cuz it deals with intestines; it is really sad - and stupid.
Vent all you want, girl! And check out the site. You will like it.

Cheers,
Maura

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Sponge-BOY??? Who you callin' BOY???

Why, I'll have you know....!

CAMaura
Posts: 719
Joined: Feb 2005

Oh, I'm sorry Mr. SquarePants.......

CAMaura
Posts: 719
Joined: Feb 2005

Hi there,
I am so sorry that your daughter receives a shut door when she is tryiing to express her fears about colon cancer. You know what scares me most, though? The diagnosis quandry. I didn't show any blood in my stools. I presented with extreme anemia - and all that goes with it; but the three-day blood-occult test was clear. With authorizations and docs scratching thir heads a bit, I was three weeks being diagnosed. Another two before surgery. I often wonder about whether my lymph nodes could have been saved had my care been a bit more quick.

The hush factor doesn't just stop with the public; it can hit us square at the dining room table. I am thrilled that your daughter will talk about it.

This is strange - maybe it is the way breast cancer was 50 years ago? I don't know. But I agree that it needs to be spoken about much more......Mybe we should just practice saying "poop" - like a mantra!!

Cheers and keep in touch,
Maura

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Right on, Babs!

I asked for a colonoscopy when I was 33 and my mom was first Dxed with CRC. Her dad died from CRC. You know what they said? "You're too young."! The second time I asked and the second time they told me that, I dropped it. Fast forward four years - guess who's got stage III CRC? Guess who's pathology revealed that he could have probably nipped it in the bud if he had gotten a 'scope at age 33 when it first formed.

Too young? NO SUCH THING!

- SB, a sponge on a mission!!

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

I think the hush factor played a part in my misdiagnosis. Its awkward asking a Doctor to look up your anus and discussing how often you poop and what it looks like.

I too am upset and angered by the double standards in society. There is so much sex and skin everywhere but to talk openly about your health is considered poor taste.

Maria

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Just got a insurance statement from Hosptal yesterday. So far my bills (which are thankfully covered) have reached $66,000.

I haven't even had surgery yet. That bascially is just 4 rounds of chemo and one Pet/CT scan. Woah....my bills total might approach 1/2 a million dollars.

I wonder how many colonoscopies that would have paid for?

Grrrr
Maria

jana11
Posts: 708
Joined: May 2004

Gotta say my peace/piece...
The doctors should be ordering colonoscopy for EVERYONE (any age) that has rectal bleeding that doesn't resolve after a few weeks. AND for anyone with anemia without a source. This is just for standard of care. Medicine isn't perfect, it is an art. BUT - CRC needs more aggressive care/screening.

Fecal occult test were shown to be about 95% wrong (false negative and positive) in a study a few months ago.

I am trying to teach doctors in training to treat everyone as they would want to be treated. It is a tough battle.

Keep your voices strong - yell!!!!!

The situation sucks. I had rectal bleeding for over 10 months and had to INSIST on going to a GI doc for a colonscopy.

Thanks for listening. jana

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

I got a fecal occult test last October, that came out negative. (I actually wondered why the Dr. even performed the test - What was I lying in saying that i had blood in my stool almost everyday?!)

So the test was negative, but come February I finally got a colonoscopy that showed a huge bloody tumor in my rectum.

95% wrong, huh. I think that test is useless. Just do the colonoscopy for any abdominal symptoms.

CAMaura
Posts: 719
Joined: Feb 2005

You bet is does, Jana. CRC also needs better follow-up care. I just finished chemo and I have to call my own shots and advocate for myself. I had to monitor my own liver levels and stop chemo when my body was telling me to. Now that chemo is over, I have to create my own checklist of tests before I feel comfortable having my port out.

Jeez, forget about docs being the experts; that is for darn sure. And you can forget about the doc knowing how to detox my liver after it was FULL of Oxaliplatin.

No longer do I leave the results to my doc; I get a copy of all bloodwork from the lab and I get a copy of every pathology report. And it is hard to do while one is anemic, or sick and depressed from chemo.

But, we continue to post and we continue to try......
And Lord, am I thankful for that!! If nothing else, this condition - or any other, I guess - will ask us to find our voice.....and use it.

Cheers and thank you for such good discussion.
Maura

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Maura & Jana -

Well said ladies. Maura, especially the part about finding our own voice and being our own advocate.

- SB

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