Colorectal Cancer Blog

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.

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….

Team Players

Yesterday I had the privilege of moderating a roundtable event that focused on using a multi-disciplinary team approach to care for patients with colorectal cancer.  The meeting involved a treatment team from M. D. Anderson in Houston, who presented how this approach to care works in their hospital.  We then spent the bulk of the day in dialogue among the participants, who represented nearly a dozen organizations working in the field of colorectal cancer.

In the meeting we addressed three questions:

--Does a multidisciplinary team approach result in better outcomes for patients?

--If so, what are the barriers that prevent this approach from being utilized everywhere?

--What can we, the participants in the roundtable, do to change this?

The answer to the first question is a resounding, “Yes!”  A multidisciplinary team approach is better for patients—particularly for patients with metastases to the liver.  The science around managing liver tumors has changed dramatically in the past few years, and these changes require close cooperation between the oncologist, the liver surgeon, and the radiologist.  The traditional approach to this cooperation is through a consultation.  One doctor will call another one, send over charts, and ask for an opinion.  Or, the oncologist will look at the liver scans, decide that surgery is impossible, and not even confer with a surgeon.

In a multidisciplinary team approach, the doctors all sit down together in a room and discuss patients one at a time.  They look together at charts, at scans, at test results, and the reach consensus on the best treatment approach.  This has several advantages.  It encourages a synergy of ideas.  It allows for debate when the best treatment is unclear.  And it helps prevent anything from being overlooked.

More than this, the team working together helps ensure that short-term gains do not close off long-term options.  For example, if the tumors in a liver are too numerous or large to be removed through surgery, it is possible to shrink the tumors through chemotherapy or other techniques.  But, if too much chemotherapy is given, the liver might be so damaged it can’t recover from surgery.  Finding the right amount of chemotherapy requires that the oncologist and surgeon work closely together.

Another great aspect of a multidisciplinary team approach is this:  the team includes more than just the doctors.  Nurses, physician assistants, and other staff are in these meetings.  This means the doctors benefit from hearing about the patient from a more personal perspective.  Does the patient have a support network?  Are they willing to go through another surgery?  How are they tolerating the chemotherapy?  Are they likely to go through with the treatment plan? 

This approach has the capacity to transform a patient into a person.  And this is a rare and wonderful thing.

So why isn’t this method being used everywhere?  More on that later….

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.

...perchance to dream...

A few days ago this country marked the 40^th anniversary of the tragic assassination of Dr. Martin Luther King, Jr.  From time to time in this past week I have pulled out my copy of his essential writings and speeches and refreshed my memory of this amazingly inspirational body of literature.  And, as is inevitable when thinking about King, I began to reflect on dreams, and the ability to bring about change.

I took on the job of CEO of the Colon Cancer Alliance for one reason—I believe we can change the world.  Reflecting on the paths others have taken to usher in transformation is helpful, even essential.  Let me be very clear.  I do not compare myself to Dr. King, nor do I compare the work of CCA to the remarkable accomplishments of the movement he shepherded.  I do hope, though, we can learn some lessons from him and from others who have dared to work for change.  Here is what I think:

Change requires, first of all, vision.  The absolute conviction that transformation can occur.  Last fall we all read the reports—featured on the front page of papers across the country--that deaths from cancer had declined.  But if you read the details, you find that the change is a matter of 2-3 percentage points.  In contrast, if everyone were screened for colorectal cancer, death rates would drop by 80% or more! I believe we can accomplish this.  I believe we can cut the number of deaths from 50,000 a year to fewer than 10,000.  I believe we can relegate this disease to a footnote in the history of cancer. And I, for one, will not be satisfied with efforts and interventions that increase compliance by 5%.  Or 10%.  That, to me, is a failure of vision.

Change requires risk, exposing yourself to the possibility of failure.  At CCA, we have created new tools and programs designed to be aggressive about the importance of screening.  A new “scratch off” screening awareness tool asks the question, “Do you want to die of colon cancer?”  (Drop me a note if you want one and I will send a copy to you.)  The Undy 5000 calls on people to participate in a 5k run/walk wearing their boxer shorts.  These things will offend some people.  Some groups will want to distance themselves from messages that are too harsh or edgy.  But they will also get people talking about this disease.  Frankly, if we don’t take the risk to do outrageous things we will never change the world.  And that is not an option.

Change requires passion.  For me, that one is easy.  I am sick and tired of meeting people who were diagnosed Stage IV simply because no-one ever told them they should be screened.  I am sick and tired of young people going misdiagnosed—told to eat more fiber or drink more water—simply because their doctor didn’t think they could have colon cancer and refused to order a colonoscopy.  I am fed up with call after call after call from people desperately needing a colonoscopy but unable to afford it.  I am talking about people who have family history, abdominal pain, and blood in their stool and can’t get a colonoscopy.  That tens of thousands of people die needlessly in this country every year is nothing short of moral bankruptcy.  This is wrong.  It is evil, and sinister, and shameful, and it must not stand!

In this world we are faced with much that needs changing.  We cannot win all the battles, nor can we forever chase cause after cause, tilting at windmills.  We must, all of us, choose which fights to fight.  So why engage in this one?  Why colorectal cancer, and not any one of the thousands of other causes?  Maybe because this is a fight we can win.  This is a cause in which we can triumph.  Here, in this space, we can absolutely change the world.  Shall we engage the enemy together?

Liver Anyone?

In a classic twist of reason and fate, people with advanced colorectal cancer end up talking far more about their liver than they do their guts.  This makes sense, of course.  The liver is the most common site for metastasis of colorectal cancer, and the majority of deaths caused by this cancer are due to liver failure.

No surprise, then that the rising stars of cancer treatment are the liver experts.  And they are doing some amazing work these days.

The process for treating the metastatic form of this cancer is to remove the tumor from the colon or rectum, then use chemotherapy to knock out tumor cells in other parts of the body.  The problem arises when you have tumors in the liver.  How do you get rid of those?  In the old days a surgeon would look at the liver and determine how many tumors were present and how large they were.  That information was fed into a formula and a decision was made to cut or not to cut.  Now it is much more fluid.  It turns out we can lose a lot more liver that we thought and still do OK.  And, it turns out that a liver that is too tumor-ridden for surgery can sometimes be changed into a liver that is operable.

These days doctors are using a number of methods to attack liver tumors.  Chemotherapy sometimes shrinks the tumors so a previously inoperable liver becomes operable.  Sometimes doctors will insert a small needle directly into the liver, finding the tumor with the help of imaging devices like MRI or CT scan.  Once there they can use electrical current to generate local heat and kill a circle of cells about the size of a golf ball.  Or they can freeze cells.  Or kill them with microwaves.  Or subject them to localized radiation. 

The technology is absolutely fascinating. But that’s not what I want to say here.

The Broadway musical Rent features a song that asks, “How do you measure… a year?”  The answer is this:  “In daylights, in sunsets, in midnights, in cups of coffee.   In inches, in miles, in laughter, in strife.” 

We can talk all we want about the fancy technology.  We can use technical language like RFA, cryoablation, radioactive yttrium, and caudate lobectomy.  But what it boils down to is this:  because of these developments, men and women—husbands and wives, fathers and mothers, sons and daughters--will have the chance for a few more cups of coffee with the ones they love.  A few more sunsets, a few more miles walked together, a few more laughs, a few more tears. That, more than all the technology in the world, gives me hope.

Field of Dreams

I lay awake last night worrying about money.

When I came to CCA just over a year ago, I sent a survey out to hundreds of our members, asking for feedback on where we should go.  Two messages were clear:  do more outreach so other patients can benefit from your programs; and, do more about screening.

For the past several months, we at CCA have been working to do exactly that.  We updated our logo and website so our “look” reflects the quality of service and care we provide.  We created a new screening tool, modeled after a lottery card.  We started the groundwork for a new 5k run/walk event.  We started reaching out to companies about doing promotions around awareness for colorectal cancer. 

The good news is, all of this is working.  We now get 30,000 hits to our website a week!  We have placed stories about the importance of screening in newspapers, magazines, and on television.  And already other cities are contacting us asking when we can bring the Undy 5000 to their location.

I am absolutely convinced these initiatives, and others, will change the landscape for this disease.  I am certain beyond a shadow of a doubt that this is the right path for the Colon Cancer Alliance, and—far more important--that the path will lead to transformational change in the level of attention paid to this disease. 

All this work takes time and money, however, and so far these things are costing us more money than we are bringing in.

So I find myself worrying about the most stupid, silly thing—money.  Vision is so rare these days.  Passion is hard to find.  Commitment and sacrifice are in short supply.  Yet when I look the CCA staff and volunteers, I see these things in abundance. 

In contrast, money is everywhere.  Most experts estimate that in the United States alone, around 9 million households have net worth of over $1 million.  In a country where a man can spend $80,000 on prostitutes, where we spend over $250 billion on fast food a year, surely enough money is around to save tens of thousands of people from having to go through cancer treatment.

So I have taken a risk.  In response to the request (or demands!) of patients, I have pushed for investment in programs that have the potential to elevate the dialogue about this disease.  These programs will change the world.  They may also run us to poverty.  But given that every day of every month of every year, over 100 people die in this country simply because they weren’t screened, how could we stand by and do nothing?

The movie Field of Dreams made famous the line, “If you build it, he will come.”  I believe that.  We have built something big and bold that has the capacity to change the world.  I absolutely believe that the money to keep it going will, indeed, come. 

I also still lie awake at night.

Time and Money

I have been thinking about rectal surgery lately. 

OK, those aren’t words you hear every day, but let me explain.   In the past, if you had rectal cancer your outcome was shaped heavily by the surgeon who operated on you.  Several studies from the 1990’s showed that the likelihood of recurrence for rectal cancer varied from 4% to 55% based on surgery alone. Now survival rates for people with rectal cancer are improving, and it is largely based in a refined surgical technique.

I am not a physician, but as I understand it the issue relates—in part--to a network of fatty connective tissue that surrounds the rectum.  Tumor cells can get into this network and migrate away from the tumor.  The early method of removing rectal cancer involved literally tearing the rectum away from this connective tissue (think of pulling the skin off a chicken breast) then cutting out the bad section of the rectum.   The problem with this approach is that it allows tumor cells to remain in the body as part of that fatty tissue, and allows those cells to circulate freely in the peritoneal cavity. 

In recent years, the best practice has been for surgeons, rather than tearing the fatty tissue, to cut it away and to clear an area at least 1-1/2” away from the tumor.  This simple change in technique results in significantly better outcomes.  But there’s a catch:  the newer, better procedure is more difficult and, more significantly, takes a lot more time. 

Who pays for the extra time?  Can surgeons charge more because they are doing fewer procedures?  Can the hospital charge more for the longer time in the operating room?  Do the nurses and anesthesiologist get paid for the extra time they commit?  And, will insurance reimburse for these extra costs?  If not, who covers the difference?

Someone, somewhere thought of a better way of doing surgery.  It was harder and more time-consuming, but ultimately saved lives.  In an era when doctors are pressured to spend less and less time with patients and on procedures, I am encouraged to know that a more time-consuming, expensive method of surgery won the day, simply because it is the best for the patient.