Colorectal Cancer Blog

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.

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.

EASTER

I know that not everyone observes Easter, but if you live in the United States you can't escape the riotous explosion of bunnies, chocolate, and colorful eggs.  If you are an observant Christian, you know that these have as little to do with the story of Easter as flying reindeer have to do with the story of Christmas.

The story of Easter is this:  Jesus died for the sins of humankind, was buried in a tomb, and rose again.  No rabbits involved.  So where do the eggs come in?  We find a clue in the date for Easter.  In the original Bible story, the events celebrated today took place in the context of Passover, a time that commemorates the liberation of the Hebrew people from slavery.  The Easter holiday, though, has been unlinked from this event and is now held on the first Sunday after the first full moon after the vernal equinox.  In other words, it has become a rite of Spring.  Rites of Spring are invariably about fertility--hence the egg.

What does this have to do with cancer?  Whether we are talking about Passover, or Easter, or rites of Spring, the underlying theme is the same:  hope against all odds.  The story of Passover is about a people living under a powerful and cruel regime, yet suddenly finding themselves liberated, emancipated, free.  The story of Easter is about the triumph of life over death, of good over evil.  And rites of Spring were an affirmation that out of the cold, dark, winter-barren soil could suddenly spring new crops to sustain life for another year.

Hope is essential to life--and to life with cancer.  Some express hope by fighting this disease as they have never fought before.  Some express hope through prayer and worship.  Some find hope in preparing for the worst, yet working for the best.  Some find hope in knowing that death is, ultimately, part of life, and that if, having fought the good fight, that is what awaits, then so be it.

Some people believe that hope changes things.  Makes the drugs work better.  Kicks the immune system into high gear.  Brings down divine help on the soft, loving wings of angels.  And that may be so.  Regardless, this much I do know to be absolutely true:  whether or not hope changes your circumstances, hope always changes you.  And maybe, just maybe, that's enough.

Happy Easter

Tim

THE GOOD CANCER PATIENT

Every once in a while a cancer patient gets to be a celebrity.  The media need a nice, tear-jerking story and they decide to focus on cancer because it always grabs attention.  Suddenly the patient has their picture in the paper or is interviewed on television, and the various details of their diagnosis--and prognosis!--are laid out for public consumption.  If they have small children or a spouse with a disability, or have lost their job or their home, then so much the better.

I recently had a conversation with one such "cancer star" about this phenomena, and she had a perspective that surprised me.  She said, "Once you have had your story told in public, you feel as though you have to live up to the role of being a "good" cancer patient."  She had trouble giving herself permission to be angry or depressed, to argue with her doctors or to complain to her nurses.  She was afraid she would let down the people who looked to her story as a source of hope.

So much of what we see about cancer focuses these days on nobility and hope.  People are quoted as talking about the gift of cancer.  I think, though, that this this is misleading.  I remember an email I received several months ago in which the person wrote, "(Cancer) is not the mild and peaceful battle that I read about and I am trying everything to cope."

Seems to me that fighting cancer teaches you about things.  You learn lessons about priorities and relationships.  You learn to advocate for yourself.  You learn how to be selfish.  And selfless.  These are good lessons to learn, but they don't make cancer a gift.  All in all, I suspect people would prefer discovering these things through a different avenue.

So what is a "good" cancer patient?  I think it is someone who is honest.  Honest about their hopes, and their fears.  Honest about their times of peace, and their times of despair.  Honest about loving their family so much that they want to protect them from all the work and stress and anxiety that being a cancer caregiver entails.  And honest about sometimes needing absolute, unquestioning pampering.

A cancer diagnoses brings with it incredible demands and expectations.  It is nothing short of cruel for us to expect patients to play some chipper, cheery, heroic role simply to make their disease more palatable for society.

My advice to the patient who had become something of a cancer celebrity was this:  Be yourself.  If someone doesn't like it, let them have the cancer next time.

Tim

 

First Blog

I have to confess that when I first heard about "web-logs", I thought, "Huh?"  I didn't get it.  Maybe I'm too old or too stodgy or too private.  (I may have been one of those people who said, "If the good Lord had wanted us to fly....")

But time goes on and we change and, hopefully, grow.  I am starting this because I have the rare and wonderful privilege to be submersed in the issue of colorectal cancer on a daily basis.  I meet with companies and other nonprofits.  With patients and caregivers.  With government groups and members of the medical community.  In each meeting I learn something.  Some new idea around treatment, or a new trick for managing side effects.  Some new aspect of the cancer world.

This blog is a chance to pass some of that information along.  Maybe it will help, or maybe not.  But I am willing to give it a shot, if you are willing to travel along with me for a while.  I warn you, though, that this will not be all peace and love.  I am an extremely hopeful person, but am also something of a skeptic.  I am not cynical, but have to say that those rose-colored glasses just never did suit me well. 

One more thing--I am much better at dialogue than monologue.  Let me know what you think, and please pass along your information and ideas.

Tim