Preventable, treatable, curable

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Laurettas
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Re: Preventable, treatable, curable

Postby Laurettas » Fri Mar 16, 2012 10:53 pm

Three posts on here are from people who did get scoped at the appropriate time and got cancer anyway before their next colonoscopy was due. At least two posts were from people who got colon cancer in their twenties--an age at which no one is encouraged to routinely get a colonoscopy. Seems to me that we have an abundance of examples showing that statement is quite inaccurate--at least from the perspective of getting exams. Colon cancer is ceasing to be merely an old person's disease and we need to work hard to find the reason so many young people are getting it.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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CRguy
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Re: Preventable, treatable, curable

Postby CRguy » Fri Mar 16, 2012 11:37 pm

Laurettas wrote:Seems to me that we have an abundance of examples showing that statement is quite inaccurate--at least from the perspective of getting exams. Colon cancer is ceasing to be merely an old person's disease and we need to work hard to find the reason so many young people are getting it.

Disagree for a couple of reasons..BUT agree we need to be getting into why ANYONE gets ANY cancer at ANY age..100 % on board with that.

Getting exams is NOT 100 %, just like ANY medical procedure, and I refer to the video of our founder MOLLY which Candy posted HERE where the discussion by the epidemiologist states that even IF everyone does it all correctly ... that would only pick up about 80 % of the cancers.

As to the statement being inaccurate...Hmmm...dunno. With this I will go with MOLLY in her own words : "it gets people talking about it, which gets people screened"
geting screened raises awareness, gets you into the system, gets you monitored and hopefully gets you "detected" early enough so you don't develop cancer.

I don't see what else could be done. What do you suggest ??????????

"Some will win
some will lose
some were born
to sing the blues..."

BUT don't stop Believin'

JMO
CRguy
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hannahw
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Re: Preventable, treatable, curable

Postby hannahw » Fri Mar 16, 2012 11:56 pm

I think it needs to be taken for what it is - a catch-phrase, not a catch-all. It's not 100%, nothing ever is. It's not meant as a guarantee.

But we all know studies do show that, on average, following the guidelines reduces your risk and improves your outcome, substantially. Not true for everyone always, but true for the majority and certainly true enough that if all people followed the guidelines, fewer people would ever be diagnosed with CRC, let alone die from it.
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Re: Preventable, treatable, curable

Postby weisssoccermom » Sat Mar 17, 2012 12:05 am

Sorry but I don't look at this as somehow implying anything about a CRC patient - I guess because I know better. I'm confident in that. I seriously have a hard time believing that others take this phrase and look at a dxd crc patient and pass judgement on us.

I remember reading that there are few cancers that actually have screening tests to theoretically help eliminate or drastically reduce the number of dxd patients. When you think about it, that's true. There's no 'screening' test for lung, stomach, ovarian, pancreatic, etc. cancers. There ARE screening tests, however for certain cancers such as breast, colorectal and cervical and when those tests are utilized on a regular and widespread basis, yes, the playing field does change. Mammograms have dxd cancers, precancers and have become more commonplace and widespread. It's proven that when breast cancers are caught early - the survival stats are significantly better. Most women don't think twice about having their mammogram - don't get me wrong, I don't look forward to them but it's truly not that big of a deal! Now, take a look at the success with the pap smear - an easy test (not one I jump for joy about but really it's no big deal!) - cervical cancer cases have dropped drastically - all because of a simple test. Personally, I believe that what this 'slogan' is trying to do is emulate the success of screening tests such as the mammogram or pap smear. Now, should another few words have been added?? Sure because I also look at this 'saying' as giving a false sense of security to those people sitting on the fence - those people who might 'know' in their hearts that something is wrong but feel that there's time. Heck, why should I go and get checked right now.....I have time to get that scope later.....doesn't the saying indicate that CRC is 'preventable, treatable and curable'???? Should add something like...."IF caught early, CRC is..."

I truly hope that this slogan, regardless of whether it is 'improved' or not helps get the word out....helps get people into the doctor's office and maybe, just maybe will help the general public realize that this cancer CAN be successfully treated but requires a simple effort - getting screened early and frequently!
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Laurettas
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Re: Preventable, treatable, curable

Postby Laurettas » Sat Mar 17, 2012 12:52 am

CRGuy,

You asked what else could be done. I think we need to have some comprehensive studies done with these young people under 50 who are getting colon cancer and find out why this is happening. Most of the promotion is for people to get screened at 50 but the group in which colon cancer is rising is among the under 50 category. What is it, a 2 or 3 percent increase every year? That is scary. Something is different than it was 20 or 30 years ago and I think we need to find out what it is.

I hate my husband having cancer now at 58 but believe me, it was much worse when he got cancer at 24 and I was looking at the possibility of raising our daughter by myself. I think the young are the group we really need to be focusing on to stop this increase in them.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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Sunwaterandsky
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Re: Preventable, treatable, curable

Postby Sunwaterandsky » Sat Mar 17, 2012 1:33 am

In my thirties, I was diagnosed with irritable bowel syndrome. That meant that any time I did have symptoms, they went back to the original diagnosis. When I was 47, I went to a different primary care physician because I couldn't get an appointment with my usual doctor. The new one immediately sent me to a GI specialist and on the trail to my diagnosis with CRC.

I am not offended by the catch phrase because I know it is aimed at the higher incident patients. It would not have caught me but I am pushing my family hard to get their colonoscopies. So far, only my dad has gone and he is the one that has esophageal cancer!
Stage 3B colon cancer at 47 years of age
small benign tumour on Rt adrenal gland
Xelox started 28/10/2011 finished 04/2012
CT scan clear 16/2012
Colonoscopy Clear October 2012
CT scan clear January 2013
CT scan Jan 2016 - small 9mm lung nodule
CT scan April 2017 - lung nodule 1.5 cm, bilateral thyroid lesions
Aug 2017 Right upper lobe lobectomy for lung nodule CC met

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CRguy
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Re: Preventable, treatable, curable

Postby CRguy » Sat Mar 17, 2012 1:39 am

Laurettas wrote: That is scary. Something is different than it was 20 or 30 years ago and I think we need to find out what it is.

Damn straight..which is why I said....
CRguy wrote:..BUT agree we need to be getting into why ANYONE gets ANY cancer at ANY age..100 % on board with that.


If you go back into the posts here you will find lots of discussion about the "when to start screening" question....and I may even have offered to counsel people who were having problems their doctors would not take seriously.... how to beat the FOBT cards to get to a scope done !!!!

I do NOT argue that we need ever increasing awareness, more..and MORE serious, investigation into the causes, detection, prevention and successful treatments of CRC. My comment was simply a reply in context to the OP's post about the effect and significance of the "slogan"... and I maintain that if folks are talking about it, the awareness is raised.

Now to answer your question specifically : the awareness factor has been increased in the "50 +" group..that is the message. So in the past, more awareness, more screening more detection and more "disease" reported..that is the historical fact. The under 50's ??? well maybe some of the CClub message is getting out and we are having more awareness, more screening, more detection...therefore "more disease reported"...don't know as I am not an epidemiologist.... OR there actually IS more disease in younger folks (my suspicion) and the actual incidence is increasing..NOT just the level of detection...again don't know as I am not an epidemiologist.

I do know that talking about it raises awareness and being aware is the first step. Look at Molly's example where there was not that awareness. Now there is. Other than that, until there are better and more readily available screening tests for everyone, I don't know what else we can do...... ? except keep telling our stories and getting the CClub message out, and doing COC visits, and encourage loved ones and friends to get scoped .....

Cheers
CRguy
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Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
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hannahw
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Re: Preventable, treatable, curable

Postby hannahw » Sat Mar 17, 2012 2:25 am

Pretty sure there is credible research that suggests the incident rate is up in younger adults, it's not just a reporting issue. While the cause hasn't been isolated (probably multi-factorial/varied), the suspects seem to be pretty clear. More people are obese, more people lead sedentary lifestyles, more people eat processed foods. And there are just more toxins in the world. Even if you do everything right in terms of diet and exercise, just by living in the industrialized world, you're exposed to nasty bad stuff. Which is why blame doesn't seem to hold much water. How can any person really be blamed for the larger environment they live in? Should we all move to somewhere unhabited (which may actually mean uninhabitable. LOL.)

There was an interesting story on 60 Minutes a few months ago in which they reported on the lives of a group of men living at a monastery on an island. They eat largely what the grow/raise for themselves. No drinking, smoking or exposure to smoking. Active lifestyles. Very little in they way of chemicals or other pollutants. And their cancer rates are much lower than the regular population. Their disease levels in general are much lower.

There is some interesting research going on with single nucleotide polymorphism. One particular SNP I've read about is believed to have sort of conferred protection against colon cancer, but more and more it is mutant. Why? Maybe it is toxins. I don't think they've gotten that far. But it's interesting researchers are pinning down very specific segments of DNA as being at least worthy of further research.

Anyways, it would be interesting to know what the average Joe/Jane on the street thinks of the slogan. Everyone on this board has some skin in. We're probably not the target audience. So I wonder if people who don't have an immediate CRC connection have heard of this slogan, know what it's about, have had their awareness raised in a meaningful way, are more likely to get screened, etc.
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Laurettas
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Re: Preventable, treatable, curable

Postby Laurettas » Sat Mar 17, 2012 9:14 am

Thanks, CR, for your reply. I agree that it has helped the older group get screened. My brother got colonoscopies because our dad had colon cancer and he has begun having polyps removed so I'm sure it is helping him.

My concern lies with the fact that it is being promoted, just like Hannah said, that the younger occurrences are primarily from bad diet and no exercise. To me, this site has totally refuted that idea with the large number of healthy-eating, active young people on here who have gotten cancer. I have everything wrong with my lifestyle,as well as family history, and don't have a polyp. There is another cause besides diet (as it is defined) and exercise and CC. I'm still betting on a deficiency of some sort--possibly something like what was discussed in the article I recently posted.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

nicola smith
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Re: Preventable, treatable, curable

Postby nicola smith » Sat Mar 17, 2012 10:48 am

I started having annual colonoscopies in my 30's owing to my UC history. Then my GI retired and I went four years without one because of difficulty finding a new GI. The new GI found my tumour...turned out it must have been there when I'd had the last colonoscopy with my former GI, but he had not been able to insert the probe the whole way because my UC had been flaring and I was apparently in pain (even though knocked out by drugs). My tumour was just a couple of inches above the point where his probe stopped. If his probe had gone just that bit further, I might not be Stage 3 now. :( I never knew that the colonoscopy had been incomplete until my new GI told me, having read the records. :x

So the moral if this story is not just to have the annual colonoscopy but also to make sure that it is completely done. And to get a copy of each report.

My new GI has a practice of rescheduling right away if a colonoscopy can't be completed. The new GI also made a point of letting the old GI know about my tumour.
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
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Terry
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Re: Preventable, treatable, curable

Postby Terry » Sat Mar 17, 2012 11:50 am

I don't think it's meant to be interpreted that way. Think of it as, getting the docs off their butts and paying attention to signs and symptoms and what their patients have to say. If caught early it's curable. The preventable part, well maybe. In my case I have six people that have had cr or cc cancer and didn't know it so was it preventable? I don't think so. With all the crap they are putting in our foods that we don't even know about, is it preventable? I think not. That's the one word that bugs me somewhat.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
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disco nap
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Re: Preventable, treatable, curable

Postby disco nap » Sat Mar 17, 2012 12:43 pm

Yep. I was told I have lynch syndrome earlier this week and honestly, if I really self-examine, I'm a little glad over it because I think it takes the blame off me in some way where public perception is concerned.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
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hannahw
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Re: Preventable, treatable, curable

Postby hannahw » Sat Mar 17, 2012 3:39 pm

is it preventable? I think not. That's the one word that bugs me somewhat.

I think this is another aspect of intent. Is it preventable via exercise and diet? Apparently not, given what we see on this board (although it does seem to be helpful). Should people be blamed for not preventing it in themselves? Definitely not. But it IS preventable if caught at the polyp stage. So getting people to screen when they need to screen is huge.

To me, part of the point here is to overcome the embarassment/fear hurdle that might prevent people from seeing a doctor about their symptoms, or to start undergoing colonoscopy at whatever age they meet the guidelines. If you're scared or embarassed, maybe you feel encouraged/empowered to see a doctor because getting to it early could improve your outcome.

Good slogans tend to be catchy, and perhaps provacative. That's how I see this slogan. As a person with a direct connection to cancer it's provacative because there's a lot of nuance that can't be captured in a three word slogan so it promotes discussion. But even if I had no connection to colon cancer, I think this slogan would probably make me want to find out more, especially if I had been putting off seeing a doctor.

My concern lies with the fact that it is being promoted, just like Hannah said, that the younger occurrences are primarily from bad diet and no exercise.
Just to be clear, I don't think it's just a matter of lifestyle, like if everyone ate well and exercised, there would be no colon cancer. There are just too many examples of that not being the case. But I do think it can be a factor for some people. More likely though, there's a combination of factors. And given how cancer rates have grown, just as our exposure to toxicity has grown, it seems like that's a likely source of trouble. We're all exposed to these toxins, but we don't all get cancer, so there must be more too it, but I think ultimately it rests largely in factors outside our control - environmental and genetic. Still, after my Dad was diagnosed I definitely started paying more attention to my diet and my exercise. I've always been an active person, but not in an organized, consistent way. Once my Dad was dignosed I got serious about watching what I eat and putting exercise on my calendar so I don't put it off. Will it help? I guess there's no way to really know. I can't travel both paths at once.

I wish I had better recall of the details of The Emperor of All Maladies so I could be more specific, but generally, I remember being struck by how cancer has been a crafty bastard for a long time. There have been numerous times in the last 50-75 years when researchers thought they had discovered a holy grail, only for it to fall through. Since every cancer is different, and the cancer if each individual is different, even without a specific cancer type, it's hard to believe there will ever be a silver bullet that crosses all boundaries. But there's incremental improvement out there. And with colon cancer, screening is definitely one of those improvements that is available. It's not 100%, plenty of examples there, but it is a powerful tool.
Daughter of Dad with Stage IV CC

Laurettas
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Re: Preventable, treatable, curable

Postby Laurettas » Sun Mar 18, 2012 12:06 am

Okay, I know you guys are going to think that I am getting pretty pushy but I just read an article that discusses my concerns about micronutrients. I had to share it with you after my niece posted it on Facebook. Interestingly, she and I have had basically no contact for many years so it is funny that we have the same line of thinking on this! Anyhow, here is the link: http://www.caltonnutrition.com/article.aspx?pid=72
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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Patience
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Re: Preventable, treatable, curable

Postby Patience » Mon Mar 19, 2012 7:55 am

Ktwirls wrote:Am I the only one who feels this applied to colorectal cancer promotes to people that it is our fault we got it and we are cured from it. Is this tag line used for other cancers?

I can relate to how irksome it is that an ad or campaign give the impression that those with cancer have brought it on themselves ("preventable").

I'm really upset with the CDC's new ads that show cancer victims that were smokers, and their ravaged bodies. The idea behind the ads is to "scare" smokers into quitting, and to "scare" youth into not starting to smoke. But what I see is that the ads "scare" cancer patient and their families/loved ones, putting a fear into them of a what their future might be. I cannot understand how the CDC can be so compassionless to those who are fighting the disease of cancer (even though the ads are supposedly helping encourage smokers to quit - that is not enough justification IMHO).

At least the colorectal cancer tagline tries to give a positive message ("treatable, curable") .... those horrible CDC ads are just a fright-night sensationalism of cancer.

To explain my views, I come at this as the wife of a previous colon cancer patient, and he's now a primary lung cancer patient. Stage IV. Never smoked. And we don't need to see during a TV ad graphic pictures of just how awful the battle with cancer can be.
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