Colorectal Cancer Blog

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.

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.

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. 

The Cure

I received an email earlier this week asking what the Colon Cancer Alliance is doing in the area of research.  I can’t quite get that question out of my mind.

The actual answer is not tough, of course.  The fact is that we have not done a great deal in this area.  We provide information about clinical trials.  We keep close contact with companies who have products on the market.  We track companies who are working on new approaches.  (In fact, next week I am visiting two such companies to learn more about their work.)  We let patients know about surveys and data collection.  And we have signed on, along with a bunch of other people, to documents calling for more funding to the NIH.

A part of me wants to do more.  I spent eight years (a long, long time ago) as a lab tech in medical research laboratories.  I remember seeing for the first time a machine that could analyze tens of thousands of bits of DNA at the same time, and still get a kick out of looking at gels and scans and data plots.  I also am old enough to remember the initial calls to find a cure for cancer.  The idea was that if we threw enough money at the problem we could find the magic elixir that would slay this beast in all its different forms.

So why isn’t CCA doing more in this area?  The easy answer is this—it is not a good use of our limited resources.  Research is expensive.  The programs that led to current treatments for colorectal cancer cost hundreds of millions of dollars.  Despite the cost, a lot of companies are doing new work in this area.  Earlier this year I attended a meeting at which small biotech companies showcased the products they are developing.  At least a dozen of these companies are working in colorectal cancer.  Each company is spending millions on this development.  In the face of this kind of investment, our efforts would have little or no impact.

Still, we could do more.  We could raise funds for start-up research grants.  In the academic world, young investigators often have a new idea they want to test.  They can’t get funds from the NIH until they have data.  They can’t get data without funds.  At this juncture an investment of $50,000 can be the difference between an amazing new approach being developed and this idea being relegated to a rusty cabinet in a musty closet. 

I keep coming back to screening, though.  In the days of my youth we dreamed of a cure for cancer.  With colorectal cancer, though, we have a better solution—we can prevent over 80% of the cases simply through screening.  In contrast, researchers feel they have made a major breakthrough if they find a new therapy that improves life expectancy by 3%.  So, should we spend our limited resources on getting people screened or should those funds become a drop in the bucket required to get a 3% improvement in outcomes?  The numbers demonstrate clearly where we should invest—in screening. 

I have to say, though, that this leaves me dissatisfied. What about the people who fall outside the screening guidelines?  Do we just abandon them?  What about the people who are already diagnosed?  Do we just say, “Well, why didn’t you get screened?” 

Here is my hope.  I hope that the efforts we are launching will have a major impact on screening rates across the country.  I hope that this changes the way we talk about and think about this disease, and that everyone (including primary care physicians who advise 25 year-old patients with persistent abdominal pain and rectal bleeding to eat more vegetables!) will be better sensitized to colorectal cancer.  I hope every patient will seek out and find a network of support and information that will enable them to take control of their treatment and insist on the latest and best care. 

And while I wish desperately that CCA could be the source of funding for some new approach that will result in the “magic bullet” for this cancer, we simply can’t focus on that right now.  I doubt the magic bullet exists.  I think that if it does exist it will be expensive to find and market.  So we will work on supporting patients, and on pushing screening.  And we will watch some percentage of people grow sicker as they wait desperately for “the cure”, knowing that too many of them won’t make it….

I hate this disease.

Where the sun don't shine...

Most people don’t have colon cancer.  Most people never even have a problem with polyps.  Even those who do have a polyp or two removed generally have no further problems.  For some people, though, it is a very different story.

We all know that colorectal cancer is more prevalent than is widely recognized in society.  One out of 18 people in the United States will be diagnosed with this cancer.  And right now the odds are about 2 to 1 they will be diagnosed in the later stages.  We also know that the key to stopping this disease is screening. 

Sometimes in screening a polyp is discovered.  This means you have to get screened more often.  Sometimes, a polyp is discovered the next time.  And the time after that. Some people have colons that are, for whatever reason, polyp-generating machines.  Odds are, at some time one of those things will get nasty.  So life becomes a litany of annual prep, annual time spent in the bathroom catching up on reading, annual colonoscopies.  And annual cycles of fear, wondering if this time something more than a polyp will be found.

Today an announcement was made that may mark the beginning of the end for this ritual.  Researchers have evaluated the efficacy of a new treatment.  They tested a combination of a synthetic amino acid, DFMO, and a non-steroidal anti-inflammatory drug, sulindac, to treat patients with recurring polyps.  The results of the study were so dramatic the oversight committee ended it early, saying it would be wrong to keep the control group on placebos when the treatment seemed so effective.

Of course, there is always a hitch.  The study group was small, and the study didn’t last long.  Some scientists say that the study has not yet proven the combination truly works, and has not yet proven that the combination is safe.  (DFMO by itself is toxic.)  Researchers probably need a couple of years to do further trials before some of these questions are answered.

Most people don’t ever have polyps, and most of those who do have no recurrence.  For that segment of the population who live in fear of those nasty little clumps of cells growing back year after year, this new report—no matter what the caveats—might just be a much needed ray of light.

Outside the Guidelines

March is Awareness Month for colorectal cancer, and we face a flurry of activity during this month.  In part I think that is great, since it generates some media.  On the other hand it seems a bit silly. After all, people are diagnosed with colorectal cancer every month of the year, not just March.

If you know much about the Colon Cancer Alliance, you know that we are in our second year of partnership with Salix Pharmaceuticals and Walgreens, the largest drug store chain in the country.  In the month of March, Walgreens has signage about screening in every one of their 6100 stores and, as part of that campaign, I participated in a series of 14 radio interviews pushing screening.  We also receive support from Amgen for our regional seminars for patients.  Amgen contracted with Joan Lunden to help with publicity, and Joan and I conducted 20 television and 3 national radio interviews.  This is where it gets interesting….

After the Joan Lunden media event, I received an email from a patient who expressed concern that the interviews gave out incorrect information.  Joan stated that the majority of people diagnosed are 50 years old or older.  In the interviews she and I both said that most people should be screened for colorectal cancer starting at that age.  This patient was much younger when diagnosed, and took exception to that message. 

How to respond to this?  We receive calls on a regular basis from people who were diagnosed before they reached 50.  The youngest patient ever to contact us was a 15 year-old girl!  Still, the data show that 90 percent of people are diagnosed later in life.  Of course, with over 150,000 new diagnoses every year, this means that 15,000 people are diagnosed before they reached the age when they should be screened.  If you are one of those 15,000 you don’t really care about data—you just wish someone had pushed you to have a colonoscopy earlier.  And, most likely you were misdiagnosed for a year or two because no-one thought a person your age could have colorectal cancer.

So what should we do?  Screen everyone at 40?  At 30?  At 15?  Clearly that is not the solution.  Seems to me that we have to look at this issue in a multi-pronged approach.  We should push to get everyone over the age 50 screened.  This will have the biggest impact for the most people.  We should also talk about other circumstances that mean earlier screening, such as a family history of cancer or polyps, being African-American, being a heavy smoker.  And, we absolutely must educate the public on the importance of being aware of your body and paying attention to things like abdominal pain, changes in bowel habits, blood in stool, etc. 

Unfortunately, even if we accomplish all of these things some people will still be missed.  I guess that this is just another proof that cancer doesn’t fight fair.