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. 

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.

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. 

New and Improved

We hear a lot about the need for new treatments for cancer, but not all new developments are about newer and better drugs.  Consider this: 

·         What if you could know ahead of time if the chemotherapy you are about to take will actually work?  Instead of going through weeks of useless treatment you could start on alternative therapies or different protocols.   And wouldn’t it be easier to handle the neuropathy or rash or thinning of hair if you knew, with a high degree of accuracy, that the treatment would work?  Very soon products will be readily available that will take a step toward exactly this kind of care. 

·         Another product is now going on the market that counts circulating tumor cells.  The idea is that the more circulating tumor cells you have, the tougher the fight against metastatic colorectal cancer will be.  This information can be used to shape therapy.  If nothing else, it is another tool in the arsenal of an informed patient that will help in making decisions about care.

·         If you are diagnosed with Stage IV colorectal cancer, you are certain to receive some kind of chemotherapy.  But what if you are Stage II?  Should you go through chemo or not?  In theory, since no cells were found in the lymph system, everything should be OK.  This is a tough decision, though.  What if you decide to forgo the chemo, and then have a recurrence?  Or what if you go through the chemo (maybe unnecessarily!) and have some weird reaction that causes long-term problems?  Which is it, the lady or the tiger?  Under which cup lies the magic ball that will keep you cancer free?  In the near future tests will be available that promise to be far more accurate than current approaches in determining if any tumor cells have broken out of the colon.   Armed with this information, patients can make better, more confident decisions about whether or not to undergo further treatment.

But wait, there’s more!  OK, maybe not, but I have to say that all of these developments begin to sound like ads for the newest and best product, As Seen on TV!!!.  Every company will tell you that their device, drug, treatment, whatever, will revolutionize care.  The good news is that some of them are right.  The bad news is that some of them won’t quite pass the Mythbusters test.  Even if they do work, a lot of questions remain.  Who gets the test?  Only people being treated at the top-notch cancer centers, or someone being treated in a community hospital?  Who pays for the test?  Will these new developments deepen the quality of care divide that already exists between those who can pay and those who cannot?  Who makes the decision?  We already know that some doctors don’t offer expensive therapies to patients who they don’t think can afford them.  This clearly seems wrong, but what is the alternative? 

Tough questions.  Difficult decisions.  Isn’t it fantastic, though, that new developments are available?  That we can even have these debates?  The road from where we are to where we should be is rocky and fraught with peril.  But, at least we have a path before us, and the path leads always to more hope.  That’s not bad.