Colorectal Cancer Blog

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.

Journeys

My day started out with journeys. I walked from the office to a tea room to meet a survivor with an amazing story. He was diagnosed Stage III in his mid-40’s. No family history, misdiagnosed for a long time because if his age. He went through the standard fare of surgery and chemo, and had some problems with neuropathy along the way. 

So far this sounds like a depressingly familiar path, doesn’t it? Here is where it changes, though… The man I met is planning to ski to the South Pole! 

Here’s the deal. This November he will fly to Argentina and assemble with a couple of other people. They will be dropped off at the edge of Antarctica, from where they will ski over 700 miles, pulling behind them sleds weighing over 200 pounds. He is training now by doing 4 hour walks, pulling two car tires behind him. (You can imagine the comments he gets along the way....)

Journeys. A life-long dream. A trip through the world of cancer. An expedition to the South Pole. We met today because he wants to use this trip, and his story, to help spread the word about colorectal cancer. 

Now another journey. It was hot this morning and I was rushing as I walked to the tea room, worried I would be late. My path took me past the White House, but before I could get there I was stopped by security guards. All pedestrian and street traffic was shut down. We had to wait several minutes while the Presidential motorcade pulled out of the White House and passed by. 

Then it struck me: President Bush was on his way to the private funeral service for Tony Snow, who died last Saturday of colon cancer. 

I couldn’t escape the irony. The President in a line of cars and SUV’s and vans and motorcycles, traveling to offer sad farewells to a man who succumbed to colon cancer. And me, walking to a little shop to share a cup of tea with a man who will trek to the South Pole in defiance of the colon cancer he has beaten. 

Journeys. We cannot anticipate where the road of life will lead us. Unexpected challenges and delights wait for us around every bend. If we are very lucky, we will have the privilege of travelling with some companions along the way. And if we are smart we will cherish their company. 

I treasure the few conversations I had with Tony over the past few months. I treasure the chat I had over tea with the man who will do something unthinkable to most people. The two of them were fellow travelers along the cancer path, though they never met or knew each other. Heroes, both of them, who chose to define their life by what they could accomplish rather than by the limitations imposed on them by cancer. 

Maybe, after all, it is not so much where the path leads us that counts, but rather how we walk the path. If we walk with courage, with love, with generosity, with hope—as these two men have done—then we can look back on the journey of our life and know that we, too, in our own small way have walked the hero’s path. That we have chosen to rise above the twists and turnings along the way, however difficult they may be. And maybe best of all, we can make it through with the sure knowledge that we have never, ever walked alone. 

Tony Snow

Tony Snow died yesterday. He will be remembered as White House press secretary, and conservative journalist. I will remember him, though, as a courageous survivor and eternal optimist.

I cannot say with honesty that I knew Tony well. I did have the opportunity to speak with him on several occasions after he was diagnosed with a recurrence of colon cancer. He was interested in helping the Colon Cancer Alliance with a fundraising event, but we were never able to get it scheduled.

The man I encountered in those conversations was remarkable for his strength and honesty.  He was incredibly warm and personable. I happened to speak with him the day after his appearance on the Colbert Report. When I mentioned I had seen the show he asked, “How did I do?” As though a consummate professional needed any affirmation. I told him he came across well—not an easy feat on that particular show.

Battling colorectal cancer the second time around gave Tony new insights. He was absolutely committed to doing something to fight this disease, and was particularly interested in the challenges of obtaining and keeping insurance after a cancer diagnosis. He told me, “Right now I am on COBRA from the White House, and I don’t know what will be involved in getting insurance when that runs out. It is not really a problem for me, because I am sure I can work it out—but what do you do if you aren’t in the position of being former White House Press Secretary?”

He once told me he considered himself lucky. He had access to the best treatment teams, and his recurrence—at that time—was limited to the peritoneal cavity. But he also knew that the tumors were growing. He said, “Right now I feel good, and I am working out like a fiend so my body will be as strong as possible if things start getting worse.”

His words were strangely prophetic. Ultimately, working out, having the best treatment team, keeping a positive attitude—these things were not enough for him to prevail.

So we have lost another friend to the insatiable beast that is cancer. But from that friend we have been given the opportunity to remember the lessons that he lived out in his battle: hope cannot be defeated, even by death; those things that are truly important can never be taken away from us; what controls our body does not have to control us; even in our own struggles we must make room for compassion toward others.

Thank you, Tony, for these life-lessons. We miss you already.

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. 

What's the ROI?

Why do we choose to help?  I mean, really—why do we choose to help others?  It isn’t self-interest.  That dollar we gave the guy on the street could have bought a cup of coffee (OK—I buy cheap coffee).  That hour we spent tutoring a child could have been spent relaxing in front of the television.  That bag of clothes donated to the local thrift shop could have been sold on eBay for a few extra bucks.

When you invest in the stock market or buy a lottery ticket you expect a return on your investment.  When you invest in people’s lives the return on investment is different, yet—in my experience—more real, more lasting, more valuable. 

The Colon Cancer Alliance is, at its heart, about investing in people.  Our donors send money to us that they could have used putting gas in their car.  Our volunteers take time out of their lives to promote screening, to listen to a patient, to walk a 5k path in their boxer shorts (shameless plug for the Undy 5000!) when they could have used that time catching a nap.  Some donors and some volunteers make significant investments in the organization.  This is different from charity, from the coins we toss to people who are needy or the used books we donate to the library fund.  This is real investment, genuine “give-‘til-it-hurts” stuff.  People on chemo who put together a fundraising event.  People who make significant donations to remember their loved one.  People who remember CCA in their will.  People who put in hours of volunteer time every week to help others affected by colorectal cancer. 

Why do this?  Because the return on investment is huge.  Imagine a husband who has waited decades for retirement, only to find that his wife is diagnosed with cancer at age 64.  What does it mean to that man that he can pick up a phone and call someone who understands his absolute terror, someone who can give him information, support, care, hope?  Imagine a daughter whose father isn’t around to walk her down the aisle, whose father succumbed to cancer too soon.  What does it mean that this young woman can turn her wedding into an opportunity to create a fund in her father’s name?  A fund that will help spread the word about screening so other young women won’t have to walk the aisle alone?

These investments are not about margins and puts and calls and commodities and mutual funds.  These investments are about life and death, about hope and despair.   Every dime given, every minute volunteered brings us one step closer to ending the suffering caused by colorectal cancer.  Now that’s a return on investment that we can all treasure.

Collateral Damage

My son introduced me to a web site that displays postcards on which people have written, anonymously, their secrets.  It is a powerful site that is, by turns, funny, tragic, poignant, and flippant.  The cards change every week, and I now have a weekly ritual of looking at the site to see what is new.

This week’s secrets all involve Mother’s Day, and you can imagine the range of sentiments displayed in the cards.  (Everything from Ozzie and Harriet to Mommie Dearest.)  One card, though, has stuck with me.  The write states: 

I am not going to cope when my mom has lost her battle with cancer. 

I am going to kill myself.

I hope there is an afterlife.

I have watched a lot of people grieve over the years.  Some people they hide their grief behind a mask of nonchalance or aloofness.  Others share their grief through shrieks of pain that seem to rend the soul.  I have thought many times that there is no bad way to grieve, that we all find our way through pain and loss in a way that works for us.  Now I am not so sure.

I admire people who find some way to create something positive out of their grief.  The woman whose mother recently died of colon cancer, and called me about volunteering because she is absolutely committed to ending the disease that took her mother from her.  The man who is battling cancer and working out the anger of having his body turned against him by talking to others who are newly diagnosed.  People who use their anger and sadness to fuel a new passion for helping others are, in my view, truly remarkable.

I understand that not everyone can do this.  Some people run as far away from the cancer world as possible, looking for some sense of peace.  This, too, is remarkable, in its own way.

But to respond to the loss of your mother by taking your own life—that is beyond my ability to accept.  I do understand it.  Years ago a good friend of mine swallowed a bottle of pills.  He told me, “I didn’t really think about killing myself.  I just wanted the pain to stop and this was the only way I could think of to make that happen.”  Understanding is not acceptance, though. Taking your life because your mother—the one who gave you life in the first place, who gave birth to you in pain and blood and joy and tears—seems the ultimate irony and insult.

So I don’t quite know what to do about this secret on a post card, don’t quite know how to think about it.  One thing is certain, though.  Cancer causes a lot of collateral damage.  It doesn’t just impact the patient.  It touches everyone that person touches, and no-one is ever the same.  Maybe our task today is to reach out to those secondary victims.  To extend our support and care beyond the patient to their loved ones.  After all, they, too, are members of the cancer family, too.

The choice to do nothing.

This is the last of a series of reflections on a roundtable event the Colon Cancer Alliance hosted earlier this week, focusing on a multidisciplinary team approach to care. 

At the start of the day I reminded the participants that as we sit through meetings about medical strategies, treatments, data, scans, and all the new developments, as we discuss these things we should never forget who we work for—patients.  I challenged everyone in the room to think of one patient and keep them in mind during the course of the day, to view the discussions and dialogue through the lens of what would best benefit that person.

The patient I considered was in his late 60’s when he was diagnosed with Stage IV colon cancer.  He decided not to have any treatment. None at all.  No resection of the colon.  No chemotherapy.  No radiation.  Nothing.  He was afraid the drugs would make him sick.  Afraid the surgery would leave him with an ostomy.  Afraid the process of being a cancer patient would turn him into cog in a big medical machine that would strip him of his dignity, take away his choices, make him less of a person.

All of those fears are grounded in reality.  Unfortunately, though, a Stage IV diagnosis doesn’t leave you with a lot of good choices.  You can go through the process of treatment until it works, doesn’t work, or you decided to call it quits.  Or you can do nothing.  By doing nothing, the opportunity for dignity and control may be better in the short term, but is almost certainly worse in the long term.  After all, having emergency surgery done by the on-call cutter at the local hospital to address massive pain due to complete obstruction is not a good alternative to intentional, planned resection of the colon by a person whose expertise is precisely this kind of surgery.

But what if this patient could have been treated a different way?  What if the treatment group got together and developed a plan of action.  What if they then brought the patient in and had a real conversation.  The team could say, “This is what we want to do.”  The patient could say, “Here is why I don’t want you to do that.”  And together they could reach a solution that incorporates everyone’s wishes.

I feel I am not explaining this well.  I guess what I want to say is this.  I am excited about the possibilities of having many, many more patients benefit from a treatment group that truly works as a team.  But I worry about the people who will be left out.  The people who cannot or will not advocate for themselves.  The people who don’t have access to providers who are experts at their work.  I worry about the growing gap between people who benefit from the very best of care, and their neighbors whose care is left in the hands of a person who has failed to keep up with the rapid developments of the past few years.  And I worry about people who--like the patient I mentioned earlier--suffer from fears and misconceptions that paralyze them into inaction, when better communication and clearer information could put them on a path to a longer and better life.

I don’t mean to say that I know better what path this patient—or any patient—should follow.  I gave up on that kind of self-deification decades ago.  I remember thinking my grandmother was crazy to have a mastectomy when she was diagnosed with breast cancer in her late 80’s.  But she went through the surgery with flying colors and had several more good years before a stroke ultimately ended her life.  I couldn’t understand the decision of a friend to be treated at a local oncology center rather than travel to a premier oncology hospital.  But staying close to home allowed her more time with her children and ensured she was surrounded by her support network.  Maybe her choice wasn’t the best chance of getting the best treatment, but it was the best choice for her.

I do wish, though, that every patient had the opportunity to make truly informed decisions.  To have the luxury of someone sitting down with them and going through options and plans, benefits and risks, costs and opportunities. 

One of the things that impressed me most about the Colon Cancer Alliance when I was in the process of joining the organization was that we offer exactly this kind of “concierge” service.  Through our volunteers and staff, we can give patients a crash course in colorectal cancer.  And we impact more patients than anyone else in the country.  Still, it is not enough.  Too many people have no internet access, and so can’t peruse our web site or join our online community.  Too many people have no concept of self-advocacy and so never even consider calling our Help Line.  Too many people don’t live near the locations where our seminars and conferences are held, and so have no opportunity to access the information they could receive there.  We must find some other way of reaching out, some way to touch people who are most likely to be isolated, alone, and feeling powerless.

Maybe the decisions would be the same.  Maybe the patient I mentioned earlier would still choose to reject all treatment. But, with a good understanding of the possible future paths the decisions—at the very least—would be made out of hope, not despair.  And hope is a rare and wonderful thing.

Another starfish in the sea...

For the last couple of days I have written about a roundtable meeting I had the privilege of moderating.  The meeting involved about a dozen non-profit groups, all working in the cancer (and mostly colorectal cancer) field.  The energy and passion in the room were palpable, and deeply gratifying. 

We discussed the benefits of a multidisciplinary team approach to treatment of patients with metastatic colorectal cancer, then outlined some of the barriers to this being the way care is offered everywhere.  At the end of the day we moved from theory to action, developing specific action items we can adopt to break down some of those barriers: 

·         We can develop a document for patients that describes the role and function of each member of the treatment team—oncologist, surgeon, interventional radiologist, physician’s assistant, nurse, and on and on (some people have over 50 different people involved in their care!).  We would then list questions the patient should ask each member of the team to help ensure that the team members are truly working together.

·         We can create a form on which patients can capture the name and contact information of their treatment team on one page.  This page can then be photocopied and provided to all the team members so they can easily communicate with others on the team.

·         We can work to change the guidelines for oncologists so they will specify that patients with metastases only to the liver be referred to a specialist in liver resection before chemotherapy begins.

·         We develop a network from the tertiary cancer centers that enables those teams to develop a treatment plan for patients from anywhere in their region, with the idea that the plan would be implemented at local care centers.

We believe these and other steps will change the landscape of care for this patient population.  But we left with some worries.

What about the patient on a ranch in west Texas, or the hills of Appalachian Kentucky?  What about the person living in the bayou of Louisiana or the far reaches of Alaska?  How will they access the care of a treatment team, when they may have only one oncologist within 100 miles?

Sometimes I feel that the work of the Colon Cancer Alliance is a bit like the man who was standing at the edge of the ocean, surrounded by hundreds of stranded starfish and, one by one, throwing them back into the safety of the sea.  A passerby observed him for a while, and then commented, “Why waste your time?  You can’t save them all.”  The man reached down, picked up another starfish, and tossed it into the water.  He then turned to the passerby and responded, “I saved that one!”  And then there were two people, standing at the edge of the ocean, throwing starfish into the sea. 

I guess I can live with that.

What stands in the way?

Yesterday I wrote about the benefits of a multidisciplinary team approach to care.  Given that this approach results in better medical decisions, and in treating patients more like human beings, why doesn’t everyone do it?  At our roundtable meeting, we discussed a variety of barriers to establishing this approach everywhere, and felt, generally, that they fall into three categories:  systems issues, provider issues, and patient issues.

Systems issues:  Most institutions and businesses develop practices that are remarkably resistant to change.  At some point, good people with best intentions hold on to ways of doing things simply because that is what they always have done.  Creating a treatment approach that is truly patient focused requires a change in organizational culture, and this isn’t easy.  Everyone in the organization, from the leadership to the line staff, must commit to the importance of this new approach.  This takes vision, commitment, and work.  More pragmatically, someone must answer this question:  who pays for it?  If a treatment team sits together in a room to discuss patients one at a time, who covers those costs?  You can’t bill insurance for this.  You can’t charge the patient.  Ironically, if the team gets together they can make better (and more efficient) decisions about care.  Ultimately this approach should cost less and result in better outcomes.  But if you can’t pay for it, it won’t happen. And, even if you can change the culture and find a way to pay, for some people getting a team together is a major challenge.  If you live in a rural community two hours away from the nearest town, finding a treatment team won’t be easy.  For many patients, the only oncologist and only surgeon to whom they have access are essentially generalists.  For them, meeting with the “team” may simply mean sitting down and having a good talk with themselves.

Provider issues:  Doctors may not embrace a multidisciplinary team approach simply because it takes them out of their comfort zone.  This is natural; we are all more comfortable with what is familiar to us.  Physicians trained in one specialty sees patients through the lens of their training.  A surgeon is more comfortable with cutting.  An oncologist is more comfortable with chemotherapy.   Collaboration is one thing—the doctor has the opportunity to share his or her expertise with others.  Sitting down at a table with physicians from other disciplines—not to mention with nurses, social workers, and others—to debate treatment approaches is much more threatening.  Providers need a compelling reason to move outside this comfort zone, and so far we have not done a good job of “selling” how significant a shift to a multidisciplinary approach can be.

Patient issues:  Some patients embrace the adage that “the doctor knows best” and go through treatment passively.  This approach provides some comfort and is relatively easy.  Simply do what you are told and hope for the best.  Sadly, this is something akin to flipping a coin to decide if you will get better or get sicker.  Other patients become almost manic in their pursuit of understanding (and, I suspect, of control over their lives).  If you type the words “colorectal cancer” into the search bar of Google, you get over 11 million hits.  I think some patients have read them all, just trying to get a handle on the disease.  This later is the kind of patient who is much more likely to demand a multidisciplinary team approach.  If they have to change the system and push doctors out of their comfort zone, then so be it.  These patients will, by all that is good and right, fight tooth and nail until their treatment team is working together to develop the best options.  As in most things, the key is balance.  Enough orneriness to demand the best care, but enough trust to commit to that care and follow it through.  Until more patients abandon the role of passive victim and embrace some self-advocacy, we will not likely see significant change in approaches to care.

So how do we fix this?  Stay tuned….