Colorectal Cancer Blog

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.