Colorectal Cancer Blog

...a brief run...

In September, the Colon Cancer Alliance held the first-ever Undy 5000, a 5k run/walk event designed to create conversation about colorectal cancer.  This past weekend we had the second event, in Dallas, and we have Phoenix coming up on the 15th.

The Dallas crowd truly got into the underwear theme:

--two young, buff men in shiny boxers and no shirts, the words "Protect your Butt" written on their bare backs, running in memory of an aunt who died;

--a woman with a fake bare bottom hanging out from a hospital gown, showing the world the importance of screening;

--a dog wearing a pair of boxer shorts.

You get the picture.  It was fun, and funny.  But also quite serious.

The top fundraiser for the event is a man whose wife has rectal cancer.  They have two young children, aged 1 and 3, and she was  about a month pregnant when she was diagnosed.

The top fundraising team participated to support a young woman in her 20's who has Stage IV colon cancer.

So we laughed.  And cried.  Sometimes both at the same time.  And I watched as something magically wonderful happened.  People came together in hope and commitment, giving of themselves in the fight against this disease.  Our staff worked tirelessly and cheerfully.  Dozens of volunteers showed up before sunrise to help make it all work.  And hundreds of participants joined in to celebrate this remarkable event.

Sometimes I think about my job, and I realize I am the luckiest person in the world.

"...I don't know who to turn to..."

A couple of weeks ago I sent out a letter asking people to make a donation to support the mission of the Colon Cancer Alliance.  The response has been gratifying and humbling.   Then a letter came that has stuck with me.  Here is part of what the letter said:

 “…you can find me to ask for money…but where were you when I had cancer as was so desperate I didn’t know where to turn?  From the chemo or radiation or the cancer I was out of my mind.  I desperately needed help but couldn’t find any.  I didn’t know where to turn.  Even still today as I suffer from the consequences of my rectal cancer I don’t know who to turn to.  I feel so alone.   I keep reading about these wonderful organizations who help people with cancer, yet my husband and I are alone.  I spend a great portion of my life crying these days, trying to figure out what to do next.”

I don’t know this person’s story.  They are in our records, so at some point they were in touch with our organization.  If they called our Help Line I am sure they were offered support and information, even the opportunity to be assigned a “buddy” with a similar diagnosis to talk to.  Did this person attend our conference or a seminar and never make further connections?  Did they hear about us and ask to be added to our newsletter list, but did nothing more?  Or—and this is what worries me most—did they try to reach us and we didn’t respond well enough?

The story speaks to the core of what we are trying to change.  Cancer is an isolating disease, and colorectal cancer is particularly isolating.  We work hard to get out this simple message:  You are not alone!  Clearly, we must do more to communicate this.  And we are working on it, in four key ways:

1.         Focus on customer service.  We must return calls quickly and be as responsive as possible to everyone who contacts us.  Our workload is heavy, and the demands are great, but this must be a priority.

2.         Accelerate the growth of a strong volunteer network.  CCA volunteers are a fantastic bunch, working at local health fairs, calling other patients, sharing information and ideas.  We need more and more volunteers to support people like the patient who wrote this letter, and we must do all we can to recruit, train, and encourage those volunteers.

3.         Expand the online community.  Earlier this year we created a special web site, www.mycrcconnections.org, that is a virtual community for people affected by colorectal cancer.  On this site, patients and caregivers connect with each other around specific issues or just the general idea of dealing with cancer.

4.         Undy 5000.  No-one with this diagnosis should ever feel alone!  The isolation comes, in part, from the fact that colorectal cancer has not received the same level of recognition as other diseases, despite the fact that every year as many people die of this cancer as die of breast cancer and AIDS combined.  In a few days, the first of a series of Undy 5000 5k run/walk events will take place.  In this event we will give out boxer shorts instead of t-shirts, and will encourage everyone to run in their boxers.  We do this for one reason—to generate attention and conversation.  Maybe through the Undy 5000 we can help more patients understand that others are going through their same experience.

Is this enough?  Of course not.  It’s never enough.  But it is a start. 

I am deeply grateful to this patient for articulating their story.  It is another reminder of who I work for, another bit of motivation to work harder, work smarter, be more compassionate, be more committed.

I see London, I see France....

The taunts and jokes of my childhood seem remarkably naïve in these days of internet porn, celebrity sex videos, and suggestive clothing being marketed to grade-school children.  We have become a highly sexualized, jaded society.  Imagine my surprise, then, when we received some push-back on our 5 k run/walk event, called the Undy 5000.

A word about the event.  We are not encouraging streaking or a lingerie walk.  We are giving out nice boxer shorts (with the fly sewn shut) and are promoting this as a family event.  Participants will be more thoroughly clad than are swimmers at the beach.

The event has gotten fantastic reception, and has already received media attention.  This is our goal—to break the silence around colorectal cancer.  Every day at CCA we hear some version of “I didn’t know that!”

·         Colorectal cancer is the 2^nd leading cause of cancer death--“I didn’t know that!”

·         This cancer affects men and women equally-- “I didn’t know that!”

·         The most common symptom is no symptom at all--“I didn’t know that!”

·         Most people diagnosed have no family history--“I didn’t know that!”

Quite frankly, silence around this disease is leading to thousands of deaths a year.  We must get people talking!

And most people understand this.  The vast majority of people I talk to about the Undy 5000 love the concept, love the name, love the way it will create “buzz”.  The push-back has come from a couple of odd places....

Early in the planning process we approached an insurance company about sponsoring the event in one of the cities.  They declined, saying they were concerned that being associated with an “Undy” event would tarnish their image. 

Tarnish their image????  This is an industry that required a college student with metastatic colon cancer to stay in school full time while in treatment or lose her insurance coverage.  This is an industry that forced a woman whose husband’s job moved them out of state to travel hundreds of miles back to their home state to receive chemotherapy.  This is an industry that will cover a screening colonoscopy, but if a malignant polyp is found and removed the procedure is not covered.  Should I go on or do you get the picture?  The time and energy cancer patients expend fighting their insurance companies is incalculable, but this company decides not to support a major new awareness campaign because they are worried about what people will think???? 

Second situation.  A month ago we were offered a billboard at greatly reduced cost in one of our cities.  Billboard advertising is tough, as you know.  Most people see it for a few seconds.  And, to be honest, when you are driving, talking on the cell phone, and drinking coffee at the same time, how much attention to you actually give to billboards?  A marketing company offered to come up with a creative idea for the billboard, and to do it for no charge (Thank you!).  They had this great idea.  A bright green background, with bold blue letters spelling this:  www.showyourunderwear.com.   Quick, punchy, and memorable.  We could envision this going viral—getting passed around from person to person.  We saw news clips, a campaign with buttons and stickers and postcards. 

Then we got the news:  the design wouldn’t pass the community decency panel of the outdoor advertising company.  This is the industry that for decades promoted smoking, that used cartoon characters to sell cigarettes and beer, that featured pre-teens in scanty clothing (remember this line:  nothing comes between me and my Calvin KIeins!).  This is an industry that in that very same city right now uses billboards to promote “Gentlemen’s Clubs” (a misnomer if there ever was one).  Apparently they can promote sex and gambling and addictive substances, but promoting an event that will open dialogue about cancer is inappropriate.

I remember when no-one would say the word “cancer”.  It was considered inappropriate, and at most was whispered in confidence.  This reticence led to more and more people dying and, thankfully, we got over it. 

I remember, more recently, when polite people wouldn’t say the word “breast”.  This silence led to untold multitudes of women dying of breast cancer.  Enough people got mad enough to change this and now we see t-shirts saying “squish your boobs” promoted on talk shows as a way of getting women to have mammograms. 

The same shift has to happen with colorectal cancer, if we are ever to end this disease.  We cannot—we will not—let the laughably hypocritical false Puritanism of a couple of companies stand in the way.  People with colorectal cancer will tell their stories.  They and their friends and family will march in the streets (in their boxer shorts, if that is what it takes).  They will carry their banners.  And they will keep walking and keep shouting and keep telling their story until the word gets out and people get screened.

What do you think?  Have we gone too far?  Not far enough?  The Bible tells us that the prophet Isaiah walked around naked for three years to communicate God’s message.  I am not a prophet, and the Undy 5000 is not a holy crusade.  And we certainly are not advocating walking around naked.  Still, how much is enough?  I look forward to hearing your thoughts.

What's the ROI?

Why do we choose to help?  I mean, really—why do we choose to help others?  It isn’t self-interest.  That dollar we gave the guy on the street could have bought a cup of coffee (OK—I buy cheap coffee).  That hour we spent tutoring a child could have been spent relaxing in front of the television.  That bag of clothes donated to the local thrift shop could have been sold on eBay for a few extra bucks.

When you invest in the stock market or buy a lottery ticket you expect a return on your investment.  When you invest in people’s lives the return on investment is different, yet—in my experience—more real, more lasting, more valuable. 

The Colon Cancer Alliance is, at its heart, about investing in people.  Our donors send money to us that they could have used putting gas in their car.  Our volunteers take time out of their lives to promote screening, to listen to a patient, to walk a 5k path in their boxer shorts (shameless plug for the Undy 5000!) when they could have used that time catching a nap.  Some donors and some volunteers make significant investments in the organization.  This is different from charity, from the coins we toss to people who are needy or the used books we donate to the library fund.  This is real investment, genuine “give-‘til-it-hurts” stuff.  People on chemo who put together a fundraising event.  People who make significant donations to remember their loved one.  People who remember CCA in their will.  People who put in hours of volunteer time every week to help others affected by colorectal cancer. 

Why do this?  Because the return on investment is huge.  Imagine a husband who has waited decades for retirement, only to find that his wife is diagnosed with cancer at age 64.  What does it mean to that man that he can pick up a phone and call someone who understands his absolute terror, someone who can give him information, support, care, hope?  Imagine a daughter whose father isn’t around to walk her down the aisle, whose father succumbed to cancer too soon.  What does it mean that this young woman can turn her wedding into an opportunity to create a fund in her father’s name?  A fund that will help spread the word about screening so other young women won’t have to walk the aisle alone?

These investments are not about margins and puts and calls and commodities and mutual funds.  These investments are about life and death, about hope and despair.   Every dime given, every minute volunteered brings us one step closer to ending the suffering caused by colorectal cancer.  Now that’s a return on investment that we can all treasure.

The Cure

I received an email earlier this week asking what the Colon Cancer Alliance is doing in the area of research.  I can’t quite get that question out of my mind.

The actual answer is not tough, of course.  The fact is that we have not done a great deal in this area.  We provide information about clinical trials.  We keep close contact with companies who have products on the market.  We track companies who are working on new approaches.  (In fact, next week I am visiting two such companies to learn more about their work.)  We let patients know about surveys and data collection.  And we have signed on, along with a bunch of other people, to documents calling for more funding to the NIH.

A part of me wants to do more.  I spent eight years (a long, long time ago) as a lab tech in medical research laboratories.  I remember seeing for the first time a machine that could analyze tens of thousands of bits of DNA at the same time, and still get a kick out of looking at gels and scans and data plots.  I also am old enough to remember the initial calls to find a cure for cancer.  The idea was that if we threw enough money at the problem we could find the magic elixir that would slay this beast in all its different forms.

So why isn’t CCA doing more in this area?  The easy answer is this—it is not a good use of our limited resources.  Research is expensive.  The programs that led to current treatments for colorectal cancer cost hundreds of millions of dollars.  Despite the cost, a lot of companies are doing new work in this area.  Earlier this year I attended a meeting at which small biotech companies showcased the products they are developing.  At least a dozen of these companies are working in colorectal cancer.  Each company is spending millions on this development.  In the face of this kind of investment, our efforts would have little or no impact.

Still, we could do more.  We could raise funds for start-up research grants.  In the academic world, young investigators often have a new idea they want to test.  They can’t get funds from the NIH until they have data.  They can’t get data without funds.  At this juncture an investment of $50,000 can be the difference between an amazing new approach being developed and this idea being relegated to a rusty cabinet in a musty closet. 

I keep coming back to screening, though.  In the days of my youth we dreamed of a cure for cancer.  With colorectal cancer, though, we have a better solution—we can prevent over 80% of the cases simply through screening.  In contrast, researchers feel they have made a major breakthrough if they find a new therapy that improves life expectancy by 3%.  So, should we spend our limited resources on getting people screened or should those funds become a drop in the bucket required to get a 3% improvement in outcomes?  The numbers demonstrate clearly where we should invest—in screening. 

I have to say, though, that this leaves me dissatisfied. What about the people who fall outside the screening guidelines?  Do we just abandon them?  What about the people who are already diagnosed?  Do we just say, “Well, why didn’t you get screened?” 

Here is my hope.  I hope that the efforts we are launching will have a major impact on screening rates across the country.  I hope that this changes the way we talk about and think about this disease, and that everyone (including primary care physicians who advise 25 year-old patients with persistent abdominal pain and rectal bleeding to eat more vegetables!) will be better sensitized to colorectal cancer.  I hope every patient will seek out and find a network of support and information that will enable them to take control of their treatment and insist on the latest and best care. 

And while I wish desperately that CCA could be the source of funding for some new approach that will result in the “magic bullet” for this cancer, we simply can’t focus on that right now.  I doubt the magic bullet exists.  I think that if it does exist it will be expensive to find and market.  So we will work on supporting patients, and on pushing screening.  And we will watch some percentage of people grow sicker as they wait desperately for “the cure”, knowing that too many of them won’t make it….

I hate this disease.

...perchance to dream...

A few days ago this country marked the 40^th anniversary of the tragic assassination of Dr. Martin Luther King, Jr.  From time to time in this past week I have pulled out my copy of his essential writings and speeches and refreshed my memory of this amazingly inspirational body of literature.  And, as is inevitable when thinking about King, I began to reflect on dreams, and the ability to bring about change.

I took on the job of CEO of the Colon Cancer Alliance for one reason—I believe we can change the world.  Reflecting on the paths others have taken to usher in transformation is helpful, even essential.  Let me be very clear.  I do not compare myself to Dr. King, nor do I compare the work of CCA to the remarkable accomplishments of the movement he shepherded.  I do hope, though, we can learn some lessons from him and from others who have dared to work for change.  Here is what I think:

Change requires, first of all, vision.  The absolute conviction that transformation can occur.  Last fall we all read the reports—featured on the front page of papers across the country--that deaths from cancer had declined.  But if you read the details, you find that the change is a matter of 2-3 percentage points.  In contrast, if everyone were screened for colorectal cancer, death rates would drop by 80% or more! I believe we can accomplish this.  I believe we can cut the number of deaths from 50,000 a year to fewer than 10,000.  I believe we can relegate this disease to a footnote in the history of cancer. And I, for one, will not be satisfied with efforts and interventions that increase compliance by 5%.  Or 10%.  That, to me, is a failure of vision.

Change requires risk, exposing yourself to the possibility of failure.  At CCA, we have created new tools and programs designed to be aggressive about the importance of screening.  A new “scratch off” screening awareness tool asks the question, “Do you want to die of colon cancer?”  (Drop me a note if you want one and I will send a copy to you.)  The Undy 5000 calls on people to participate in a 5k run/walk wearing their boxer shorts.  These things will offend some people.  Some groups will want to distance themselves from messages that are too harsh or edgy.  But they will also get people talking about this disease.  Frankly, if we don’t take the risk to do outrageous things we will never change the world.  And that is not an option.

Change requires passion.  For me, that one is easy.  I am sick and tired of meeting people who were diagnosed Stage IV simply because no-one ever told them they should be screened.  I am sick and tired of young people going misdiagnosed—told to eat more fiber or drink more water—simply because their doctor didn’t think they could have colon cancer and refused to order a colonoscopy.  I am fed up with call after call after call from people desperately needing a colonoscopy but unable to afford it.  I am talking about people who have family history, abdominal pain, and blood in their stool and can’t get a colonoscopy.  That tens of thousands of people die needlessly in this country every year is nothing short of moral bankruptcy.  This is wrong.  It is evil, and sinister, and shameful, and it must not stand!

In this world we are faced with much that needs changing.  We cannot win all the battles, nor can we forever chase cause after cause, tilting at windmills.  We must, all of us, choose which fights to fight.  So why engage in this one?  Why colorectal cancer, and not any one of the thousands of other causes?  Maybe because this is a fight we can win.  This is a cause in which we can triumph.  Here, in this space, we can absolutely change the world.  Shall we engage the enemy together?

Field of Dreams

I lay awake last night worrying about money.

When I came to CCA just over a year ago, I sent a survey out to hundreds of our members, asking for feedback on where we should go.  Two messages were clear:  do more outreach so other patients can benefit from your programs; and, do more about screening.

For the past several months, we at CCA have been working to do exactly that.  We updated our logo and website so our “look” reflects the quality of service and care we provide.  We created a new screening tool, modeled after a lottery card.  We started the groundwork for a new 5k run/walk event.  We started reaching out to companies about doing promotions around awareness for colorectal cancer. 

The good news is, all of this is working.  We now get 30,000 hits to our website a week!  We have placed stories about the importance of screening in newspapers, magazines, and on television.  And already other cities are contacting us asking when we can bring the Undy 5000 to their location.

I am absolutely convinced these initiatives, and others, will change the landscape for this disease.  I am certain beyond a shadow of a doubt that this is the right path for the Colon Cancer Alliance, and—far more important--that the path will lead to transformational change in the level of attention paid to this disease. 

All this work takes time and money, however, and so far these things are costing us more money than we are bringing in.

So I find myself worrying about the most stupid, silly thing—money.  Vision is so rare these days.  Passion is hard to find.  Commitment and sacrifice are in short supply.  Yet when I look the CCA staff and volunteers, I see these things in abundance. 

In contrast, money is everywhere.  Most experts estimate that in the United States alone, around 9 million households have net worth of over $1 million.  In a country where a man can spend $80,000 on prostitutes, where we spend over $250 billion on fast food a year, surely enough money is around to save tens of thousands of people from having to go through cancer treatment.

So I have taken a risk.  In response to the request (or demands!) of patients, I have pushed for investment in programs that have the potential to elevate the dialogue about this disease.  These programs will change the world.  They may also run us to poverty.  But given that every day of every month of every year, over 100 people die in this country simply because they weren’t screened, how could we stand by and do nothing?

The movie Field of Dreams made famous the line, “If you build it, he will come.”  I believe that.  We have built something big and bold that has the capacity to change the world.  I absolutely believe that the money to keep it going will, indeed, come. 

I also still lie awake at night.

Outside the Guidelines

March is Awareness Month for colorectal cancer, and we face a flurry of activity during this month.  In part I think that is great, since it generates some media.  On the other hand it seems a bit silly. After all, people are diagnosed with colorectal cancer every month of the year, not just March.

If you know much about the Colon Cancer Alliance, you know that we are in our second year of partnership with Salix Pharmaceuticals and Walgreens, the largest drug store chain in the country.  In the month of March, Walgreens has signage about screening in every one of their 6100 stores and, as part of that campaign, I participated in a series of 14 radio interviews pushing screening.  We also receive support from Amgen for our regional seminars for patients.  Amgen contracted with Joan Lunden to help with publicity, and Joan and I conducted 20 television and 3 national radio interviews.  This is where it gets interesting….

After the Joan Lunden media event, I received an email from a patient who expressed concern that the interviews gave out incorrect information.  Joan stated that the majority of people diagnosed are 50 years old or older.  In the interviews she and I both said that most people should be screened for colorectal cancer starting at that age.  This patient was much younger when diagnosed, and took exception to that message. 

How to respond to this?  We receive calls on a regular basis from people who were diagnosed before they reached 50.  The youngest patient ever to contact us was a 15 year-old girl!  Still, the data show that 90 percent of people are diagnosed later in life.  Of course, with over 150,000 new diagnoses every year, this means that 15,000 people are diagnosed before they reached the age when they should be screened.  If you are one of those 15,000 you don’t really care about data—you just wish someone had pushed you to have a colonoscopy earlier.  And, most likely you were misdiagnosed for a year or two because no-one thought a person your age could have colorectal cancer.

So what should we do?  Screen everyone at 40?  At 30?  At 15?  Clearly that is not the solution.  Seems to me that we have to look at this issue in a multi-pronged approach.  We should push to get everyone over the age 50 screened.  This will have the biggest impact for the most people.  We should also talk about other circumstances that mean earlier screening, such as a family history of cancer or polyps, being African-American, being a heavy smoker.  And, we absolutely must educate the public on the importance of being aware of your body and paying attention to things like abdominal pain, changes in bowel habits, blood in stool, etc. 

Unfortunately, even if we accomplish all of these things some people will still be missed.  I guess that this is just another proof that cancer doesn’t fight fair.