Colorectal Cancer Blog

To Screen or Not To Screen...

I recently received a call from a woman whose father is dying of colon cancer. He is in his early 70’s and had never been screened. By the time his doctors found the cancer, it had spread to his liver and lungs.

This week we heard that screening for prostate cancer may do more harm than good—particularly for older men. I understand that, I suppose. Prostate cancer tends to grow slowly, and the significance of test results is not entirely clear.

I worry, though, that in a twist of logic we will generalize a very specific recommendation. That the message will shift from “Men over 75 should not be screened for prostate cancer” to “No-one should be screened for prostate cancer” to (and this is the scariest part) “I shouldn’t be screened for any cancer.”

Every day in the United States more than 100 people die of colorectal cancer because they weren’t screened when they should have been. Every day. 

Colorectal cancer is the second leading cause of cancer death in this country, yet a simple screening will reduce the risk of having this disease by 80% or more.

The debate about prostate cancer screening will go on for a long time. One thing is not debatable, though—cancer screening in general, and screening for colon cancer in particular, saves lives.

All that glitters

I wonder, sometimes, what a perfect life would look like. Just about every society through time and around the world has envisioned a better place, a better life. Heaven, Nirvana, Shangri-La—these are all descriptions of someplace without the struggle of where we live now. I have to say, though, that walking streets of gold or sitting around drinking mead don’t sound all that appealing. I suspect that after the first couple of weeks it would all be a bit tiresome.

So what does a better life look like? More money? We are surrounded by messages telling us that money is the answer. We venerate the rich, flock to seminars on wealth accumulation, and spent untold amounts of cash on lottery tickets hoping somehow to find the key to a better life. But I have rarely found a person who felt that they had enough wealth. The quest for money is like a beast that is all mouth and no stomach—you feed it and feed it and feed it and it never gets full. 

Maybe a better life means being one of the beautiful people. The amount of money spent on cosmetic surgery each year is staggering—and growing. Remove some fat here, add some padding there, paralyze a few nerves, tighten up some skin, and maybe at the end of it all we will find contentment.

I would love to see a study of the messages we receive through media. If a visitor from another planet were to determine our values based on the messages we receive through television, radio, and the internet, what would their impression of us be? I suspect they would determine that we value above all else money, sex, power, and revenge. Is that who we are? Is that who we wish to be?

What does a perfect life entail? I suspect the true answer is simpler. If someone were to offer me a million dollars for my house I would sell it. A hundred thousand for my car---done! But what if someone offered me $10,000 in exchange for the memory of the first date with my wife? What if I could get $25,000 for the memory of seeing my daughter for the very first time, or watching my middle child ride his bike for the first time, or hearing my youngest (now a senior in college!) tell me he feels fortunate to have me as a father? 

The perfect life. A life full of treasured memories, of priceless friendships, of cherished opportunities to see and experience the beauty of this world.

Yesterday I received the word that another friend had been taken by the monster that is cancer. She had not yet turned 40 and left behind a husband and a young daughter. She talked to me a few months ago about leaving a legacy for her little girl. She said nothing about money, about fame, about physical beauty. Rather she said, “I left her advice, with instructions that she read one portion when she is six, another when she becomes a teenager, another when she goes to college.” I want her to know, throughout her life, how much I love her.

The perfect life would not have cancer or loss or death, if we could help it. But really, if we had to choose between a loving mother fight cancer and a heartless parent fighting for a bigger slice of the pie, wouldn’t we choose love? If we had a choice between a loved one taken from us by death or someone taken from us by apathy and selfishness, wouldn’t we choose the pain of love lost over the pain of love ignored and abused?

Maybe, after all is said and done, our lives are more perfect than we know, if we only had eyes to see it, ears to hear it, hearts to feel it. Maybe, the things that make life worth living can never be touched by sickness and death. This, in part, is the legacy this young mother left her daughter. And me. And, perhaps, you as well.

Journeys

My day started out with journeys. I walked from the office to a tea room to meet a survivor with an amazing story. He was diagnosed Stage III in his mid-40’s. No family history, misdiagnosed for a long time because if his age. He went through the standard fare of surgery and chemo, and had some problems with neuropathy along the way. 

So far this sounds like a depressingly familiar path, doesn’t it? Here is where it changes, though… The man I met is planning to ski to the South Pole! 

Here’s the deal. This November he will fly to Argentina and assemble with a couple of other people. They will be dropped off at the edge of Antarctica, from where they will ski over 700 miles, pulling behind them sleds weighing over 200 pounds. He is training now by doing 4 hour walks, pulling two car tires behind him. (You can imagine the comments he gets along the way....)

Journeys. A life-long dream. A trip through the world of cancer. An expedition to the South Pole. We met today because he wants to use this trip, and his story, to help spread the word about colorectal cancer. 

Now another journey. It was hot this morning and I was rushing as I walked to the tea room, worried I would be late. My path took me past the White House, but before I could get there I was stopped by security guards. All pedestrian and street traffic was shut down. We had to wait several minutes while the Presidential motorcade pulled out of the White House and passed by. 

Then it struck me: President Bush was on his way to the private funeral service for Tony Snow, who died last Saturday of colon cancer. 

I couldn’t escape the irony. The President in a line of cars and SUV’s and vans and motorcycles, traveling to offer sad farewells to a man who succumbed to colon cancer. And me, walking to a little shop to share a cup of tea with a man who will trek to the South Pole in defiance of the colon cancer he has beaten. 

Journeys. We cannot anticipate where the road of life will lead us. Unexpected challenges and delights wait for us around every bend. If we are very lucky, we will have the privilege of travelling with some companions along the way. And if we are smart we will cherish their company. 

I treasure the few conversations I had with Tony over the past few months. I treasure the chat I had over tea with the man who will do something unthinkable to most people. The two of them were fellow travelers along the cancer path, though they never met or knew each other. Heroes, both of them, who chose to define their life by what they could accomplish rather than by the limitations imposed on them by cancer. 

Maybe, after all, it is not so much where the path leads us that counts, but rather how we walk the path. If we walk with courage, with love, with generosity, with hope—as these two men have done—then we can look back on the journey of our life and know that we, too, in our own small way have walked the hero’s path. That we have chosen to rise above the twists and turnings along the way, however difficult they may be. And maybe best of all, we can make it through with the sure knowledge that we have never, ever walked alone. 

Tony Snow

Tony Snow died yesterday. He will be remembered as White House press secretary, and conservative journalist. I will remember him, though, as a courageous survivor and eternal optimist.

I cannot say with honesty that I knew Tony well. I did have the opportunity to speak with him on several occasions after he was diagnosed with a recurrence of colon cancer. He was interested in helping the Colon Cancer Alliance with a fundraising event, but we were never able to get it scheduled.

The man I encountered in those conversations was remarkable for his strength and honesty.  He was incredibly warm and personable. I happened to speak with him the day after his appearance on the Colbert Report. When I mentioned I had seen the show he asked, “How did I do?” As though a consummate professional needed any affirmation. I told him he came across well—not an easy feat on that particular show.

Battling colorectal cancer the second time around gave Tony new insights. He was absolutely committed to doing something to fight this disease, and was particularly interested in the challenges of obtaining and keeping insurance after a cancer diagnosis. He told me, “Right now I am on COBRA from the White House, and I don’t know what will be involved in getting insurance when that runs out. It is not really a problem for me, because I am sure I can work it out—but what do you do if you aren’t in the position of being former White House Press Secretary?”

He once told me he considered himself lucky. He had access to the best treatment teams, and his recurrence—at that time—was limited to the peritoneal cavity. But he also knew that the tumors were growing. He said, “Right now I feel good, and I am working out like a fiend so my body will be as strong as possible if things start getting worse.”

His words were strangely prophetic. Ultimately, working out, having the best treatment team, keeping a positive attitude—these things were not enough for him to prevail.

So we have lost another friend to the insatiable beast that is cancer. But from that friend we have been given the opportunity to remember the lessons that he lived out in his battle: hope cannot be defeated, even by death; those things that are truly important can never be taken away from us; what controls our body does not have to control us; even in our own struggles we must make room for compassion toward others.

Thank you, Tony, for these life-lessons. We miss you already.

Independence Day

We have just celebrated July 4, a holiday that makes us think about freedom. The Sousa marches, the displays of fireworks, images of patriotism—these all evoke in our minds the great champions of liberty. “Give me liberty or give me death!”

I grew up when the United States lived under the shadow of threat from the Soviet Union. School days were punctuated by bomb drills and by lessons on the horrors of the Soviet regime. “You have no freedom! They can lock you up with no trial! Their press is controlled by the government! They encourage their citizens to turn each other in for any rebellious thinking—even having children turn in their parents!”

I could never understand how people could live under such restriction, why they didn’t chaff at the harsh control and, in the end, rebel against the oppressors. When I was in high school, though, I heard a talk a by a man who had been a missionary in Russia. He told us that freedom means different things to different people. That in Russia, people looked to the government to take care of them. The principles of communism were that they didn’t have to pay for health care or worry about food or fret over whether they would have a job or not. For the people there, these were elements of freedom. And if that meant that they had to live under an authoritarian regime, then so be it.

In the United States, of course, we have different definitions of freedom. We live under the adage of Benjamin Franklin: “They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety.” 

So what does this have to do with colon cancer? I think it is about attitude. Some people are diagnosed with cancer and become absolute tigers. They read up on the disease, learn of every acceptable and alternative therapy, research the best doctors, get second opinions, and third, and fourth. Others give themselves into the hands of their physicians, obediently following the path laid out before them by doctors they trust.

Which way is right? Is either path wrong? I tend to be of the first camp, so it is easy for me to embrace the idea of fighting tooth and nail. I know, through the many, many patients who the Colon Cancer Alliance has touched, that some treatment paths lead to better outcomes. Minimally invasive surgery can shorten hospital stays and reduce complications. Using a stint to repair a colon resection may reduce the need for ostomy. Being treated in a cancer center that utilizes a true multi-disciplinary team approach offers the best chance for successful management of liver metastases. 

I must also admit, however, that treatment and care are about more than just science. We cannot underestimate the value of receiving care in a place that is familiar, that is located nearby, that is staffed by people you know. 

Everyone wants the very best care. It may well be true, though, that different people interpret differently what that means. Isn’t it nice to have the freedom to choose?

Tick Tock

Time is a challenge. 

When I was younger I loved the Harry Chapin song “Cat’s in the Cradle”. Some of you will remember that this is a ballad about a father who was incredibly proud of his son, yet never managed to find time to spend with him. The boy learns to walk while the father is gone on business. He asks his father to play ball with him, but the man is too busy. The years pass and now the father craves time with his son, but the young man has filled up his life with other things. The window of opportunity has passed. Now that I am older, I find myself identifying all too often with the father.

Over a week has gone by since I added to this blog. I start each day with good intentions of writing a few sentences, but then the day goes by. Proposals to write. Job applicants to interview. Calls to answer. You come in early and leave late, with a “to do” list that seems to grow by the day. Truly, time is a challenge. 

It makes me wonder how anyone has the time to have cancer. And cancer is, among many other things, very time consuming. Visits with the oncologist, and the surgeon, and the radiologist, and the nutritionist. Surgery and recovery. Sessions with the IV pole delivering the next round of chemo. Where do you fit it all in?

It’s all about priorities, isn’t it? We somehow find the time to do what is important. We fill our lives up to the brim with busy-ness and complain about our hectic schedule. Then something big comes along—like cancer—and everything changes. All of a sudden time is not the challenge it once was. The struggle of a hectic schedule pales in comparison to the battle for your life. 

I suppose that this is one of the lessons cancer can offer—to focus on what is truly important. Family. Friends. Beauty. Hope. Honesty. Peace. Cancer is a harsh, cruel teacher, though. I have met many people who value the lessons learned in battling cancer. But I have met no-one who would intentionally choose to learn those lessons at the feet of such a monstrous instructor.

Wouldn’t it be smarter if we could learn to balance out our days with things of worth, and do so without the tragedy that comes along with cancer? To measure out the minutes and hours of our days in way that makes room for the people we treasure and the activities we enjoy? 

Time is a challenge—and an opportunity. I think I will take the opportunity to learn these lessons now, today, before the next big crisis comes along. I will work on being less busy and more productive. I will start taking a few minutes to engage in the things I cherish. I commit myself to work on these things.

As soon as I can find the time….

What the Definition of “is” is….

I received a call earlier today from a woman who is a two-time breast cancer survivor.  Her father died of leukemia and her sister died of colon cancer.  (Her story is actually even more complicated that this, but you get the picture—this woman has suffered.)

She has had a colonoscopy or two along the way, with nothing abnormal found.  Now, though, she is past due for another colonoscopy.  Given the history of cancer in her family—including a sibling with colon cancer—this is critical to her care.  Lucky for her, she has health insurance.  And, lucky for her, the insurance covers colonoscopy.   Except….

Cancer, you know, attacks more than the body.  It attacks your friendships, your love life, your career, your mental health.  And it attacks your financial well being.  Imagine two bouts of chemo, two bouts of surgery, two bouts of radiation.  With co-pays, deductibles, lost work, uncovered expenses—with all of that, how many of us would have much left?

So this caller’s insurance covers colonoscopy, but she has a $250 co-pay.  And she can’t afford it.  The money simply isn’t there.  Given her expenses and debts, she is already anticipating working well beyond normal retirement age.  Given her ravaged financial situation a loan isn’t really an option.  And insurance companies are not known for establishing payment plans.

A piece of legislation is being kicked around in Congress that would institute a federal mandate, requiring all insurance companies cover the cost of screening for colorectal cancer.  Some insurance companies oppose this legislation, simply because they oppose all mandates.  But really, they aren’t worried.  After all, it depends on what the definition of “is” is. 

A plan that pays for FOBT but not colonoscopy can say that screening is covered....

A plan that pays for colonoscopy, but with a $1000 deductible can say that screening is covered....

A plan that pays for colonoscopy, but has no appointments available for the next six months can say screening is covered....

What do we mean by "is"?

Insurance companies are an easy target to bash, and that is not what I am trying to do here.  In fact, many co-pays, deductibles, etc. are established by employers and, sometimes, by employees.  Choose a larger co-pay and you have lower premiums.  That is pretty attractive in these financial times.  Bottom line, I am not optimistic that a federal mandate will result in the reality that patients who need a colonoscopy will be able to get a colonoscopy.

At a minimum, here is what we need.  Everyone should get a free colonoscopy (or virtual colonography) at age 50.  No deductible.  No co-pay.  It should be free.  You should get a day off work without leave for that test, or at least be able to take only a half-day.

And, everyone should be required to be screened when signing up for Medicare—either have a colonoscopy (or virtual colonography) or have an FIT done for three years in a row.  Those tests should be free—but should be required as part of being in a Medicare plan.

Is this enough?  No, of course not.  It leaves out people diagnosed when they are in their 20’s or 30’s or 40’s.  It ignores growing data about earlier onset of cancer for African Americans and for smokers.  It doesn’t provide for ongoing screening into your 70’s.  Still, it is a start.  If we did only this we would save 100 lives a day—every day of every year. And we would save money!  The costs of this program would be more than offset by reduced healthcare costs. 

When I think about my caller from earlier today, I am embarrased. We should be ashamed that a country like ours puts people like this good woman in the situation she is in.  We should be ashamed that we have been so knotted up in competing agendas that we haven’t at the very least gotten the cancer screening part of healthcare right.  We should be ashamed that a nation founded on the promise of life, liberty, and the pursuit of happiness does not provide a basic test that will help a citizen have the opportunity to fulfill that promise. 

We can be better than this.  We must be better than this.  And, with all of us working together, we will be better than this.  I just hope it happens in time to help the woman who called me today. 

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.

On the horizon....

This past weekend I was in Chicago for the annual meeting of ASCO—the American Society of Clinical Oncology.   A few days before that I attended the largest annual meeting for gastroenterologists—Digestive Disease Week.  These meetings are generally where big, new data is presented, where the latest and best is offered up to the professionals working in the field.

This year, not a lot came out in the area of colorectal cancer.  Some additional information was released about the connection between a particular mutation and the patients likelihood to respond to a particular treatment.  (About 25% of patients have this variation, and they are unlikely to respond to this type of agent.)  Some posters were presented about the importance of multidisciplinary care, or about advances in managing liver metastases.  One even demonstrated that increased side effects to a particular treatment correlates with increased benefit from that treatment. 

I was struck, though, by the amount of energy and resources being poured into this field of study.  One poster session I attended had 25 rows of poster presentations.  These are generally early studies from graduate students and young investigators, and often signal trends in treatment and care.  I met with representatives from three companies who are looking at ways to monitor disease or measure treatment.  One company counts tumor cells in the blood; more than 3 cells from colorectal cancer in a 7.5 ml vial of blood is a bad indicator.  Another looks at a particular compound generated only by colon cells.  If that compound is found outside the colon it means the cancer has broken through and spread outside the colon. 

Clearly, the treatment world for people with colorectal cancer will be very different five years from now—and much better.  I am excited about the brave new world that is looming for patients.

Of course, I have a slightly different vision.  I dream of a day when we can manage to get so many people screened we actually don’t need these new developments.  When the medical community finds a way even to screen for early onset colorectal cancer.  Can you imagine a time when the big cancer meeting has no gastrointestinal track because no one gets the cancer anymore?  That’s a world I can live with.

Just the facts…..

The story is told of a scientist walking down a country lane with a friend.  The friend comments, “Those cows sure are a pretty shade of brown.”  To which the scientist replied, “Well, they are brown on this side.”   The point is, the scientist could not see the other side of the cows and was unwilling to comment on something for which there was no direct observation.

The core of science and medicine is data.  “Evidence based medicine” is the hallmark of the day.  This begs the age old question, though, “What is truth?”

Trying to follow the data in a particular field (say, for example, colorectal cancer) is like watching a tennis match.  A lot of back and forth before anything is decided.

The fact is, scientists are human.  And tests are complicated.  And the right kind of statistical analysis can make the numbers look beautiful.  Much as we cherish the image of a researcher as a rigorous “I can only see this side of the cow” kind of person, the reality is shaped by a lot of factors.

Here are some of the issues faced by science:

--What question to you ask?  Suppose you are eating a nice, juicy apple and I ask you, “Please answer yes or no:  Is that thing you are eating round or is it an apple?”  What kind of data would I get?  Asking the wrong question may result in beautiful data, but the data is likely to be meaningless.  What if you combine two chemotherapy drugs, giving full doses of each?  Will that make treatment twice as good?  Turns out that some combination therapies work better than single therapy. Some work the same.  Some are less effective.  It is all in the balance and combination.  But if you look only at the first question you could conclude that combining therapies doesn’t work.

--How much data is enough?  Good scientists never like to stop accumulating data.  At some point they must, painfully, simply report their findings.  The challenge is being sure you have enough data to make the results meaningful.  We all know that if you flip a coin 10 million times, all things being equal you will get “heads” half the time and “tails” half the time.  We also know that you can flip a coin three times and get “heads” all three times.  Several months ago a report came out that combining some supplements with a particular therapy interfered with that therapy’s ability to work.  A few months later another report came out showing that those supplements actually make the therapy work better.  The difference?  More data.

--Aberrations.  The worst thing to happen in research is to have one or two outliers.  All your data lines up neatly. Your charts look great, your graphs are nice and orderly.  Except for those one or two data points that don’t fit the profile.  It is terribly tempting to dismiss those data points.  To ignore them and hope they will go away.  In all likelihood they are nothing.  Unless they aren’t. 

So data and truth aren’t necessarily the same thing.  I am not saying that scientists are lying.  Despite a few high-profile cases of researchers fabricating data, the vast majority of investigators do what they do because they have a passionate, burning desire to find out stuff.  I do believe, though, that data in and of itself is a trap.  Truth comes from lots of different studies over a long period of time.  We can move medicine forward on data, but should not be confused that we truly understand the truth of all that is happening in the human body.

This weekend is the annual meeting of ASCO:  The American Society of Clinical Oncologists.  This is the meeting where all the new information on cancer research is presented.  Thousands of talks and poster sessions and conversations.  Over 30,000 cancer docs from all over the world.  The news will, no doubt, report on several new findings, on new studies with new data.  A lot of it will be exciting.  And some of it will even represent the truth.