Colorectal Cancer Blog

Down the Rabbit Hole

Does anyone else feel that we have fallen through the rabbit hole?  The news is filled with reports about how terrible the economy is, but new blockbuster movies bring in millions of dollars every weekend and restaurants are bustling.  Gasoline is threatening to go below $1 a gallon, while we still pay a fuel surcharge for flying or taking a cab.  We are seeing unemployment growing at an alarming rate, while the healthcare sector gained a record number of jobs. 

Particularly troubling is the growing gap between those who “have” and those who “have not”.  One segment of the population frets over the long-term effect of botox while another segment cuts their anti-nausea drugs in half because they can’t afford the full prescription.  The “haves” complain about the taste of prep for colonoscopy while the “have-nots” suffer abdominal pain, blood in the stool, and anemia but cannot be tested for colon cancer because they have no health insurance.

I am an American through and through.  Eagle Scout.  God and Country award.  I believe in democracy and the basic concepts of capitalism.  Still, something is wrong here.  How can you have liberty and the pursuit of happiness if your life is cut short because you can’t afford to go to the doctor? 

Years ago I read a book by a very conservative writer.  He argued that in a democratic capitalist society three forces are at work—government, business, and a loose coalition of organizations such as churches, non-profits, service groups, etc.  At any given time one of these two may have a disproportionate amount of power.  When this happens, the other two sectors join forces to implement change.  For example, businesses were using child labor until social groups teamed up with government to pass labor laws.  The idea is that at any given time things may be out of balance, but over a period of years the balance will be restored.

These days we are certainly out of balance.  We have, indeed, fallen through the rabbit hole.  The fractured and dysfunctional nature of our healthcare system is killing people, ravaging families, and destroying dreams.  Now we know that it is also strangling businesses.  Simply put, the cost of healthcare covered by industry prevents American companies from being competitive in the global marketplace.  Isn’t it time to address this imbalance?  While we are busy bailing out banks and mortgage lenders who made untold fortunes using practices everyone knew were irrational and unsustainable, or propping up car companies who kept cranking out cars no one wants, perhaps we can also find a few billion here or there to work on healthcare.  After all, it is hard to sustain the American dream when you are on your deathbed.

Secrets

I am a regular reader of PostSecret.  This website grew out of a project in which people were asked to write their secret on a postcard and mail it in.  The response was overwhelming and has now generated books, speaking tours, postcards from around the world, and a website. 

One recent postcard read:  Thanks to the chemotherapy, I'll never have kids of my own...it makes me feel irrelevant to the human race.  This note evoked an immediate desire to know more, to become engaged.  Of course, like all the secrets, this is anonymous, so communication is not possible.

Many aspects of cancer are poignant.  The fight often brings conflicting emotions--hope and despair, community and isolation, tears and laughter.  Becoming sterile or infertile because of chemotherapy may be the cruelest irony of all.  The treatment that may give you live takes away your ability to create life.

One reader of the secret sent in a response to the card:  The chemotherapy had the same effect on me.  I just remember that I wouldn't have had kids of my own had I died either.  Personally, I prefer life.

I am not sure how I feel about that comment.  I agree with it, but it doesn't feel quite right to me.  What is the cost of staying alive?  What price are we willing to bear?  These are questions every patient must face, and the trade-off is not simple or easy.

Another reader provided a powerful response that, to me, truly offers hope:  I felt totally alone and irrelevant for the first 11 years of my life.  Then a woman just like you (she had cancer as a child) became my foster parent and eventually adopted me.

As I read this I was reminded of consequences.  We cannot see the effect of our decisions--large or small--on the rest of our life or on the lives of others.  Cancer diagnosis leads to a cure.  The cure leads to infertility.  The infertility leads to adoption.  And the adoption makes all the difference to a lost and lonely 11 year old.  If the cancer had not occurred would this young child ever have found love, family, home?  Who knows. 

I do know this--we have no idea what the next chapter of our story will hold.  If we could see all the pain and struggle that lies ahead of us we would be shaken to the core.  If we could see all the joy and laughter we would go dancing in the sun.  Cancer, chemotherapy, childlessness--none of these is the final chapter.  Even when we die, as we all must do, the story will go on.  It will be told in the lives of those who have touched by our life, and for that touching, been changed forever.

This drug's for you....

Personalized medicine sounds so chic, so sophisticated, so elite.  What can be better than having treatment tailor-made just for me!

The problem with a custom product--whether it is a car, a couch, or a chemotherapy regimen--is that the cost of such a product goes up dramatically.  And sometimes you don't get what you want.  Years ago I knew a woman who had a pair of shoes made by a genuine cobbler.  She was living in London at the time and decided, despite the outrageous cost, that this was her one shot at something truly custom-made.  The good news was that these were the most comfortable shoes she had ever owned.  The bad news is that they were uglier that the north side of a cow headed south, if you know what I mean.  The cobbler molded the shoes to her feet; that is why they were comfortable.  But she had, in her words, "pork-chop feet" that were, to put it kindly, oddly shaped.  The result--weird looking, comfortable, very expensive shoes that sat in the back of the closet, unused.

The CEO of Lilly recently declared that the advent of personalized medicine will usher in a new, more efficient era of drug development.  He notes that the typical drug approved by the FDA is only effective in half of the patients who receive the drug.  Clearly this is an outrage.  Clearly we can do better. 

He further argues that personalized medicine will result in lower drug costs.  This is where I hit a stumbling block.  The process of moving a drug from discovery to market is very, very expensive.  To a large extent those expenses are constant, regardless of the sales potential of the drug.  Personalized medicine means, in part, that once a drug has gone through this entire outrageously long and expensive process, it will only be prescribed for half the number of patients that might otherwise have received it.

This means that patients will, over the next few years, receive fewer and fewer drugs that have no chance of helping them.  This is a wonderful, fantastic development.

What we will all need to watch, though, is the unintended consequence of changing economics in drug development.  As the pool of patients decreases, the price point of the drug must increase in order to offset development costs.  It is wonderful to think that a cancer patient can eventually receive a drug custom-made for their genetic profile.  i can only hope that we can somehow work out the money issues so that drug is, in fact, available and not sitting in the back of the closet like a pair of pork-chop shaped shoes. 

...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.

Change we need...

So we have a new president.  I live in Washington, DC, a heavily Democratic city.  I also live in a transitional neighborhood that is a few blocks from a traditionally black university.  When the networks declared Obama the winner last night, the neighborhood was filled with shouts of joy, with horns honking, with fireworks.  I was thinking, though, about a patient.

He called our Help Line yesterday, looking for somewhere to turn.  He has four children, very little money, and no health insurance.  He also has Stage IV colon cancer.  He is at a loss as to where to go for treatment, how to pay the bills, how to avoid bankruptcy, eviction, chaos.  And he is one of many.

We are getting more and more calls like this--people pushed to the brink of poverty, or beyond, by a catastrophic illness they never saw coming.  No insurance.  Now, no hope of getting insurance.  Bills mounting.  Unable to work.  What do you say to a person who feels they are worth more to their family dead than they are alive?

We have a new president, who will be faced with many, many challenges.  With the collapse of the economic bubble the attention of Americans drifted away from healthcare.  In recent polls, health care ranked low on the list of priorities for people determining how they would vote.  What does that mean for this man with four children and metastatic cancer?  What does it mean for families with hospital bills in the six figures? 

Somehow we must find a way of pushing the atrocious state of our health care system back to the forefront.  It is hard, after all, to enjoy the pursuit of happiness when you are one illness away from being destitute.

Bad Advice

Yesterday I was at a health fair with a major corporation.  This company has excellent health benefits, and i found that a large number of people with whom I spoke had already had a colonoscopy.

I was astounded, then, to hear that so many of these good folks had received bad advice.  Listen:

"I went the doctor when I was 50 and she told me that screening for colon cancer is optional, that even if I wanted to do it I could easily wait until I am 55 or 60.  I was sure relieved that I don't have to do that now."

"When I had my colonoscopy, they removed several polyps that turned out to be pre-cancerous.  They told me I need to get another colonoscopy in 5-7 years."

"My Mother and Uncle both had colon cancer.  I had polyps removed.  Now my daughter is 41 and is having some bleeding and pain.  The doctors tell her not to worry about it, she doesn't need to get a colonoscopy."

When I hear these stories I think of the faces of people I have met.  Of the woman in Nashville whose husband was told he could wait until he was 55 to get screened.  He was diagnosed with metastatic cancer when he was 53.  Of the many, many people I have met who were told they were too young to worry about colon cancer, despite having a family history and having pain and bleeding.  Every one of them have colon cancer.  Every one was misdiagnosed for months or years while the tumors grew.

This week a handful of people are now educated about the best way they can reduce their risk of getting colorectal cancer.  It makes me forever grateful to the hundreds of Colon Cancer Alliance volunteers who go out into their community to tell the story, to sound the alarm, to offer comfort and help and information and support.

Sometimes it feels like a voice crying in the wilderness.  But enough of us joining our voices together can create a roar that the whole world can hear.  Now that is good news.

"...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.

Another case of rejection

The phone rang in my office a few days ago.  It was a reporter who wanted a comment on a study showing that a very low percentage of patients with colorectal cancer receive adequate follow up care.  Maybe 1/3 of people who finish therapy actually are able to receive the regular check-ups that can warn of a possible recurrence.

How can I possibly comment on that?  This is outrageous beyond comprehension!  Do I respond with a scream?  With sobs of frustration?  Do I rant and rave?  Demonstrate weeping and gnashing of teeth? 

The biggest fear patients have, once they have finished treatment, is this:  “Will the cancer come back?”  Once your body has betrayed you and turned against itself, you never really have confidence that it won’t happen again.  So patients look to those follow up visits with trepidation and fear.  And when they hear the news that the scans all look good, it is like being born again to new hope. 

Now this study shows that many patients never get those follow up visits.  And why?  They can’t afford them.  Their provider won’t cover it.  The doctor fails to order the tests.  The situation is absurd and just fundamentally wrong—people who have already been dealt the bad hand that is cancer now being denied the tests that will let them know if they are OK or not.

The reporter asked, “Does this study resonate with what you know in working with patients?”  Answer—absolutely!  I cannot count the times I have heard of patients having to fight with their provider to cover a PET scan or some other follow up test.

Then the tougher question, “Why do you think this is happening?”  Why, indeed…

Here’s what I said:  “We can point to a lot of factors in why this is happening.  The status of our health care system.  Providers who make decisions without understanding the medical impact of those decisions.  Doctors who don’t have enough time to continue the follow up. 

“These factors, though, are symptoms of an underlying problem, which is this:  colorectal cancer has not received the level of attention it deserves and needs in order to assure that everyone involved in this disease knows they are working in the spotlight.  We have not generated enough passion, energy, media buzz, moral outrage around this highly prevalent, yet highly preventable disease.  Because of this people can experience crappy, unconscionable care and—in many cases—not even know they are getting less than the best.  We need a lot more voices, and a lot more avenues by which those voices can be heard, in order to change the landscape for patients.” 

Here’s a start.  If you have a story about having trouble—for yourself or a loved one—getting the proper follow up tests done to monitor for possible recurrence, please send me a note.  Just a couple of sentences outlining your experience.  With enough stories and enough voices we can push the media to report on this more.  Maybe, together, we can crank up the spotlight a bit.

Trust and Obey

I have been thinking lately about trust, and about obedience.  About the importance of having confidence in your treatment team, and the difference between confidence and unquestioning compliance.

I know a long-time advocate, a Stage IV survivor, who is passionate about keeping abreast of the latest treatment options.  She has learned that the standards have changed around when to do colon resection.

A little background is in order.  When you hear that you have cancer the first thing you want to do is get that horrible thing removed from your body.  And typically that is what people did with colon cancer.  The first thing that happens is abdominal surgery to remove the primary tumor.  In recent years, though, that approach has been called into question, particularly for patients who have metastases to the liver.  The fact is, most cancers in the colorectal area grow slowly.  In fact 2/3 of the people who die from this cancer actually lose their live because of the tumors that have spread to the liver.  For this reason, unless the patient has a bowel obstruction, a lot of doctors choose now to focus on the liver first and schedule a colon resection later.

So this advocate goes to a medical education event.  This is a meeting where doctors can fulfill their requirements to engage in ongoing education in their field of study. Before the lecture began, my friend was chatting with two surgeons who focus on colon resection, and mentioned the newer approach of, when possible, delaying colon surgery.  Both surgeons rejected this approach, saying they always do the colon surgery first. 

The lecture started and the presenter—a top-notch surgeon—happened to address this specific issue.  He showed data proving that patients have a better outcome if the treatment team is able to focus on the liver first rather that jumping straight into colon resection.  My friend looked over her shoulder to see how the two surgeons were taking this information, thinking they would now see that they should change their practices.  Instead, they two doctors were standing at the back of the room drinking coffee, eating snacks, and talking with each other.  They had not looked at the data or heard the information.  Of course they still received their education credits for attending the meeting.

What is the moral of this story?  The field of medicine is changing quickly, and very few doctors can keep up with everything.  Bottom line—patients need to find a treatment team in whom they have confidence and with whom they feel comfortable.  But they should never, ever accept the treatment protocols without asking questions and learning for themselves what the current standards of care are for their disease.  This does not mean second guessing the doctor, but it might mean saying, “I know you are planning this chemotherapy regimen, but I have heard that some people take this other regimen.  Why choose one over the other?”

Trust, I believe, is important.  It builds confidence and hope.  It encourages patients to stick with the treatment when it is long past fun or even tolerable.  But blind obedience driven by an assumption that “the doctor knows best” is a crapshoot at best.  You might come up lucky, but then again….

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.