Colorectal Cancer Blog

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. 

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.

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….

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.

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?

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.