Stuart Scott

[Bev G]

[

if there would be any sort of platform at ESPN to perhaps do some sort of public service announcement about CRC---or to do something to raise awareness, anyway.

In general, I don't see why ESPN couldn't do something like this (a lot of their viewers will be impacted by colon cancer at some point in their lives), but I don't think it should attempt to involve Stuart Scott. First, we don't know that he has CRC. Second, his privacy is his business. If he wanted to do a PSA, he would.

I don't know, Hannah, maybe he (Stuart Scott) doesn't know that there is an organized sort of community (ie Colon Club) who would be glad to support him, and also to use his position power to promote screening/awareness (assuming we would). I never suggested that his privacy wasn't his business, and I'm certainly not suggesting "outing" him! I know absolutely nothing about the guy or his cancer. I DO NOT think that everyone with CC knows about this board---over the past several years I've had the opportunity to tell probably 10 cc people about it--have no idea if any of them are now members, but I'd like to think some of them checked it out.

Katie Couric did a lot to enhance people's awareness about CC. I can't imagine (and don't know) how many people got colonoscopies because of her advocacy. I think she's done a lot to help. I really like the idea of other folks who get attention to exploit that attention for cc awareness (when they feel like it, that is)

[SkiFletch]

Bev, I admire you for trying, and I'd be really impressed if they responded to you in a positive manner. I'd be far from surprised if they did not.

Hannah, you and I clearly don't agree about how reasonable it is for someone who signs up for a job with national exposure to expect as much privacy as most other folks within most modern society, especially one as connected as ours is. You're right, our increased speed and ability for information exchange alone makes it beyond difficult for nationally recognized figures to maintain their privacy. That said, even if such figures are naive enough to not know what they're signing up for (right or wrong), they probably know about the realities regarding the issue after over a decade in such a position.

Regardless, someone's right to privacy was not the issue I was intending to discuss with this thread. So I'll just ask anyone/everyone here directly a potentially 3-part question. Do you think that within our society there is a negative stigma/taboo regarding saying that you have COLON cancer versus any other specific cancer? If your answer is yes, the follow-up is do you think that such an attitude towards CRC has negatively impacted the decision of some number of folks to NOT get screening and ultimately perish from a preventible disease? And finally if so, do we want to keep such a cultural attitude around at the expense of those lives?

My answers to those 3 questions are yes, yes, and no. We hear it all the time, people are afraid of CRC and it's treatment, and as a result they don't seek screenings. Instead they stick their heads in the sand and just hope the unkown monster will go away. You don't change that attitude by keeping the closet closed with the light out. You open it up, turn the light on and prove that what is in there is far less scary than what we've conjured up out of fear. It's my belief that announcing we have COLON cancer helps in it's own way turn that light on. Or at least it's a step in the right direction. Clearly some agree and others disagree.

[Kathryn in MN]

Eric, Tony Snow talked about colon cancer all the time. He probably didn't say much when he was doing his daily press briefing. His mother had it and died (I believe) in her forties. He had a yearly colonoscopy: One year clear, the next year stage 4.
He preached about getting colonoscopies constantly - not that it did him a hell of a lot of good.

Now...Hugo Chavez and his mysterious pelvic cancer, something tells me he doesn't want to say rectal cancer. I could be wrong but just a feeling.

Robin

Snow's family has been very involved in CRC awareness for a while. They just partnered with GYRIG to start a support system for caregivers. They've been participating in GYRIG at a big level for a few years.

http://www.getyourrearingear.com/caregivers/

http://www.ereleases.com/pr/time-rear-gear-alexandria-68609

I wish EVERYONE with colorectal cancer would speak out about it. I do every chance I get. When I first started telling my story, I hoped to get at least one person to schedule their colonoscopy. Now I've encouraged hundreds, and many of them have had pre-cancerous polyps removed, including my own younger brother and my husband, and a few close friends. Our GI tracts are just as important as our lungs or breasts, or any other body part. Years ago most people would never talk about breast cancer, and those in treatment retreated to the privacy of their homes without letting anyone know, often even fairly close family members were not told. Look at the turnaround in the last 30 years for breast cancer. We CAN do it for colorectal cancer too. It takes everyone at the grass roots level AND those with higher public profiles to really get the word out. I've got a few irons in the fire right now to raise more awareness, but being "just me" and not some well-known celebrity, sad as it is, I can only make a small impact. The truth in our society is that when someone famous has something happen, people pay attention and the stories get told.

[BostonGuest]

For what it's worth ... I had the pleasure of meeting Stuart back in 2004 in Houston at the Pats v. Panthers Super Bowl. He was one of the kindest, most humble, and appreciative people I have ever met. It made me a bigger fan of his than I already was & I've followed his story rather closely. It's always been announced and publicly discussed as stomach cancer & his prior treatments did not seem colon cancer related (we are into year 2 of spouses' stage IV diagnosis so I do have some familarity) ... there was an in depth article done on him a few years back where he was VERY open about the diagnosis and treatment (it was a NYC media ...maybe Times but can't be sure) and left little doubt.


Sure, he could absolutely be covering up a colon cancer diagnosis by saying it is stomach, but in fairness, I know he has been open about it previously & was very candid when asked about it. I don't know him personally, so I can't say. Regardless, may he fight the good fight again & may we all get through our journeys with success!

[Bev G]

Fletch, as far as the loss of anonymity with a public sort of job, I totally agree with you. Once or twice a year I Google my son-in-law and always read at least a few really nasty things people have said about him, and, I'll admit it, I get a bit riled up. Then I have to (I just HAVE to) call and complain to him about it, and he just laughs. Then he give me the old "any publicity is good publicity in my kind of job, Bev---it's all water off a duck's back--no worries". He keeps his private life as separate from his public as possible, and in fact, "in person" couldn't be any more different than he is on TV. Although I almost never watch Sports Center, or the other stuff he's on, whenever I have, I can't recognize him from the son, husband and father I know. So, blah-blah-blah, Fletch, all of these guys know that they are no longer "private" in all the ways they would like to be, and it's part of the price they pay for their chosen careers.

As to your question, I don't think that I think there is any longer much of a taboo about colon vs other cancers, but I tend to circulate either within a medical community or a community with my cc friends, my non-cc, non-medical friends did not seem to perceive my cc diagnosis with horror or disgust, other than just with the horror associated with any cancer diagnosis. I continue to think people are reluctant to get screened for cc because of the perception of how horrible the colonoscopy prep/procedure are, and basically because people believe cancer is something that happens to other people, not themselves. How often do we hear our friends here mystified and mortified because they "always ate well, exercised, never smoked and never drank alcohol"....even WE ourselves haven't fully realized that cancer is an equal opportunity killer! And, regarding your last comment, I have never hesitated to tell anyone I have colon cancer, how I put off getting screened for quite a while, and how I wound up stage IV because of my reluctance to get tested. I tell everyone "Please get your colonoscopy when you hit fifty (even if they look 80 to me. LOL) --or if you develop symptoms. Chemo sucks way more than a colonoscopy---several have promised me that they would. Who knows?

[hannahw]

Hannah, you and I clearly don't agree about how reasonable it is for someone who signs up for a job with national exposure to expect as much privacy as most other folks within most modern society, especially one as connected as ours is.

I don't think it is reasonable for a public figure to expect privacy with respect to things like where they eat. When you're a public figure and you're in public, it's not private because people are going to be interested (compared to when I eat out and no one cares ) And certainly public figures share details about their personal lives (things they like, places they go, pictures, etc) as a way of creating a connection with their fans. It's unreasonable of them to think they're going to have full discretion on when the info faucet is turned on and off. It's part of the trade off - you get to be rich and famous, we get to know more about you than we could possibly need to.

However, I think matters of medical care fall into a separate category and I do think it's reasonable for ALL people, famous or not, to expect privacy. HIPPA laws are for everyone, not just everyday people.

Even if someone like Stuart Scott is unreasonable to expect privacy, that doesn't obligate him to be public about his medical care. My main point is that I don't think he should be criticized for not making his cancer fight more public. Advocacy isn't for everyone. The fact he's famous doesn't oblige him to be an advocate.

I'd rather praise people like Katie Couric and Sharon Osbourne then criticize Stuart Scott. I'd also rather praise people like you and others on this board for the advocacy you do then criticize Stuart Scott. The people that choose to embrace advocacy are doing a great service. The people who don't embrace advocacy have their reasons and I support that.

As to your questions, my answers are the same as yours: yes, yes and no. But I don't think these answers obligate people to make their private medical issues public. The stigma that prevents people from getting screened and therefore costs lives can be overcome without expecting every person with colon cancer to shout it from the roof tops. There are lots of ways for people to be involved in the CRC fight, many of those ways are behind the scenes. Maybe someone like Stuart Scott doesn't do a CRC PSA, but we writes a big check in support of CRC research or in support of an organization dedicated to raising awareness. We don't know, but I don't think we can assume that just because a person doesn't speak out doesn't mean they aren't helping out.

[Bev G]

Hannah, again, I don't know, but I just don't think anyone was criticizing Mr. Scott (Stuart??)--confusing of him to have two first names with my chemo brain! Maybe he was criticized and I missed it. I really like what you said in your last paragraph though, and heartily agree with you. In all of life, we all do what we can, when we can, in our own ways, don't we? No one should judge!

Best to you,

Bev

[Ashlee H.]

SkiFetch - My answers to your questions are the as yours. I've always been outspoken to people about my colon cancer. Many friends have gone in for their colonoscopies because of me. But, some friends having "issues" didn't go in for tests until they ended up in the ER. They didn't want to be told it was colon cancer. They didn't want to be like me (so far, these friends all ended up with other things as IBS and such) In my work I meet a lot of different people. I normally don't tell those people I have cancer because it's not appropriate for the job. However, one lady was telling me about her family member, who she clearly did not like, had colon cancer. Turns out he goes to the same cancer center I go to. I told her I had Stage IV colon cancer, and I think I made a difference. Here I was working, having a life, and was a nice person. Sometimes when people ask what kind of cancer I have, I think it's because they want to share a story of their friend/family member who had breast cancer and how they beat it. When I say "Colon Cancer" with a smile, they look a little shocked and don't know what to say. They just tell me I'll beat it. I am surprised how many people have been touched by colon cancer - and I do believe the tide is slowly turning, especially since so many young people are being DX. Everytime I read about a celebrity who died of "cancer", I now just assume it is colon cancer - and it usually is. Like Rock Hudson with AIDS, it is going to take a big time celebrity (the younger, the better) to get DX and start the change to support colon cancer funding. My mom won't even tell people I have colon cancer - I don't even think she tells her friends I have cancer....that's a whole nother different issue.

[hannahw]

Bev, maybe I misinterpreted, but to me, when the topic is about wishing Stuart Scott (or any public figure) would "call a spade a spade" and make their colon cancer diagnosis public, it strikes me as an implied criticism that he's choosing to keep it private. If someone should do something, but doesn't, and you say you're disappointed that they haven't done the thing you think they should do, isn't that a criticism of them for not doing it?

Anyway, it sounds like Stuart Scott may actually have stomach cancer. Either way, if he wants to be a public advocate, great. If he doesn't, that's fine too.

[SkiFletch]

Hummm, perhaps I left things too ambiguous Hannah. My original goal was to outline the concept using a recent examle. I can see where you're coming from there. Perhaps even something as simple as the title of the thread set the tone in an unintended way.

[Lara239]

SkiFetch - My answers to your questions are the as yours. I've always been outspoken to people about my colon cancer. Many friends have gone in for their colonoscopies because of me. But, some friends having "issues" didn't go in for tests until they ended up in the ER. They didn't want to be told it was colon cancer. They didn't want to be like me (so far, these friends all ended up with other things as IBS and such) In my work I meet a lot of different people. I normally don't tell those people I have cancer because it's not appropriate for the job. However, one lady was telling me about her family member, who she clearly did not like, had colon cancer. Turns out he goes to the same cancer center I go to. I told her I had Stage IV colon cancer, and I think I made a difference. Here I was working, having a life, and was a nice person. Sometimes when people ask what kind of cancer I have, I think it's because they want to share a story of their friend/family member who had breast cancer and how they beat it. When I say "Colon Cancer" with a smile, they look a little shocked and don't know what to say. They just tell me I'll beat it. I am surprised how many people have been touched by colon cancer - and I do believe the tide is slowly turning, especially since so many young people are being DX. Everytime I read about a celebrity who died of "cancer", I now just assume it is colon cancer - and it usually is. Like Rock Hudson with AIDS, it is going to take a big time celebrity (the younger, the better) to get DX and start the change to support colon cancer funding. My mom won't even tell people I have colon cancer - I don't even think she tells her friends I have cancer....that's a whole nother different issue.

interesting Ashlee. for sure. My inlaws..told my husband not to tell anyone that he had colon cancer (but he does anyway, lol) and they will not tell anyone of their friends where they live that he has colon cancer. My father in law actually said "it is a stigma son, dont say it". Maybe it is a generational thing? I agree, if some young celebrity gets it then it may help things a lot.

[Ashlee H.]

Someone told me today (don't know if it is true or not), that in some Asian countries it is a taboo subject, so much so that they don't get treatment. If that is true - how very sad.
Just occurred to me about the Rock Hudson statement - it was Elizabeth Taylor that really got behind that campaign. I don't think he even admitted to having it until just weeks before his death. But I do remember how people reacted with the AIDS epidemic - and it was very similar to how people reacted to any kind of cancer in the 50-60's - burn the sheets, don't eat off the same plates, etc. We've come a long way - but still have a ways to go.

[hannahw]

My original goal was to outline the concept using a recent examle.

In some respects, I think it's just a difference of opinion because even as a general concept, I don't think any celebrity (or anyone at all) is obligated to talk about whatever disease they have, colon cancer or otherwise. And I do believe in medical privacy, even in this day and age, even for the biggest media whores in Hollywood (Not that I expect them to want that privacy. There are reality show deals to ink!) However, I totally agree that less stigma and more awareness would do a lot for helping prevent colon cancer, or at least allow for early diagnosis. At the end of the day, people contribute what they can contribute to the colon cancer fight and I'm good with that, whatever it entails for each individual.

Wrt to the idea that a young celeb having colon cancer would make a big difference in terms of awareness, I hope we never find out.

[mstults]

We are human. Some are more private than others. I have a cousin that has stage 4 breast cancer for 8!years. She almost refuses to talk about it and doesn't want much information about her treatments. She feels that to discuss it is dwelling on it thus letting it control her life. I'm just the opposite. If I make it 8 years that is subject to change.

[mstults]

Edit. Not 81. 8