Colorectal Cancer Blog

This drug's for you....

Personalized medicine sounds so chic, so sophisticated, so elite.  What can be better than having treatment tailor-made just for me!

The problem with a custom product--whether it is a car, a couch, or a chemotherapy regimen--is that the cost of such a product goes up dramatically.  And sometimes you don't get what you want.  Years ago I knew a woman who had a pair of shoes made by a genuine cobbler.  She was living in London at the time and decided, despite the outrageous cost, that this was her one shot at something truly custom-made.  The good news was that these were the most comfortable shoes she had ever owned.  The bad news is that they were uglier that the north side of a cow headed south, if you know what I mean.  The cobbler molded the shoes to her feet; that is why they were comfortable.  But she had, in her words, "pork-chop feet" that were, to put it kindly, oddly shaped.  The result--weird looking, comfortable, very expensive shoes that sat in the back of the closet, unused.

The CEO of Lilly recently declared that the advent of personalized medicine will usher in a new, more efficient era of drug development.  He notes that the typical drug approved by the FDA is only effective in half of the patients who receive the drug.  Clearly this is an outrage.  Clearly we can do better. 

He further argues that personalized medicine will result in lower drug costs.  This is where I hit a stumbling block.  The process of moving a drug from discovery to market is very, very expensive.  To a large extent those expenses are constant, regardless of the sales potential of the drug.  Personalized medicine means, in part, that once a drug has gone through this entire outrageously long and expensive process, it will only be prescribed for half the number of patients that might otherwise have received it.

This means that patients will, over the next few years, receive fewer and fewer drugs that have no chance of helping them.  This is a wonderful, fantastic development.

What we will all need to watch, though, is the unintended consequence of changing economics in drug development.  As the pool of patients decreases, the price point of the drug must increase in order to offset development costs.  It is wonderful to think that a cancer patient can eventually receive a drug custom-made for their genetic profile.  i can only hope that we can somehow work out the money issues so that drug is, in fact, available and not sitting in the back of the closet like a pair of pork-chop shaped shoes. 

Another case of rejection

The phone rang in my office a few days ago.  It was a reporter who wanted a comment on a study showing that a very low percentage of patients with colorectal cancer receive adequate follow up care.  Maybe 1/3 of people who finish therapy actually are able to receive the regular check-ups that can warn of a possible recurrence.

How can I possibly comment on that?  This is outrageous beyond comprehension!  Do I respond with a scream?  With sobs of frustration?  Do I rant and rave?  Demonstrate weeping and gnashing of teeth? 

The biggest fear patients have, once they have finished treatment, is this:  “Will the cancer come back?”  Once your body has betrayed you and turned against itself, you never really have confidence that it won’t happen again.  So patients look to those follow up visits with trepidation and fear.  And when they hear the news that the scans all look good, it is like being born again to new hope. 

Now this study shows that many patients never get those follow up visits.  And why?  They can’t afford them.  Their provider won’t cover it.  The doctor fails to order the tests.  The situation is absurd and just fundamentally wrong—people who have already been dealt the bad hand that is cancer now being denied the tests that will let them know if they are OK or not.

The reporter asked, “Does this study resonate with what you know in working with patients?”  Answer—absolutely!  I cannot count the times I have heard of patients having to fight with their provider to cover a PET scan or some other follow up test.

Then the tougher question, “Why do you think this is happening?”  Why, indeed…

Here’s what I said:  “We can point to a lot of factors in why this is happening.  The status of our health care system.  Providers who make decisions without understanding the medical impact of those decisions.  Doctors who don’t have enough time to continue the follow up. 

“These factors, though, are symptoms of an underlying problem, which is this:  colorectal cancer has not received the level of attention it deserves and needs in order to assure that everyone involved in this disease knows they are working in the spotlight.  We have not generated enough passion, energy, media buzz, moral outrage around this highly prevalent, yet highly preventable disease.  Because of this people can experience crappy, unconscionable care and—in many cases—not even know they are getting less than the best.  We need a lot more voices, and a lot more avenues by which those voices can be heard, in order to change the landscape for patients.” 

Here’s a start.  If you have a story about having trouble—for yourself or a loved one—getting the proper follow up tests done to monitor for possible recurrence, please send me a note.  Just a couple of sentences outlining your experience.  With enough stories and enough voices we can push the media to report on this more.  Maybe, together, we can crank up the spotlight a bit.

Trust and Obey

I have been thinking lately about trust, and about obedience.  About the importance of having confidence in your treatment team, and the difference between confidence and unquestioning compliance.

I know a long-time advocate, a Stage IV survivor, who is passionate about keeping abreast of the latest treatment options.  She has learned that the standards have changed around when to do colon resection.

A little background is in order.  When you hear that you have cancer the first thing you want to do is get that horrible thing removed from your body.  And typically that is what people did with colon cancer.  The first thing that happens is abdominal surgery to remove the primary tumor.  In recent years, though, that approach has been called into question, particularly for patients who have metastases to the liver.  The fact is, most cancers in the colorectal area grow slowly.  In fact 2/3 of the people who die from this cancer actually lose their live because of the tumors that have spread to the liver.  For this reason, unless the patient has a bowel obstruction, a lot of doctors choose now to focus on the liver first and schedule a colon resection later.

So this advocate goes to a medical education event.  This is a meeting where doctors can fulfill their requirements to engage in ongoing education in their field of study. Before the lecture began, my friend was chatting with two surgeons who focus on colon resection, and mentioned the newer approach of, when possible, delaying colon surgery.  Both surgeons rejected this approach, saying they always do the colon surgery first. 

The lecture started and the presenter—a top-notch surgeon—happened to address this specific issue.  He showed data proving that patients have a better outcome if the treatment team is able to focus on the liver first rather that jumping straight into colon resection.  My friend looked over her shoulder to see how the two surgeons were taking this information, thinking they would now see that they should change their practices.  Instead, they two doctors were standing at the back of the room drinking coffee, eating snacks, and talking with each other.  They had not looked at the data or heard the information.  Of course they still received their education credits for attending the meeting.

What is the moral of this story?  The field of medicine is changing quickly, and very few doctors can keep up with everything.  Bottom line—patients need to find a treatment team in whom they have confidence and with whom they feel comfortable.  But they should never, ever accept the treatment protocols without asking questions and learning for themselves what the current standards of care are for their disease.  This does not mean second guessing the doctor, but it might mean saying, “I know you are planning this chemotherapy regimen, but I have heard that some people take this other regimen.  Why choose one over the other?”

Trust, I believe, is important.  It builds confidence and hope.  It encourages patients to stick with the treatment when it is long past fun or even tolerable.  But blind obedience driven by an assumption that “the doctor knows best” is a crapshoot at best.  You might come up lucky, but then again….

Independence Day

We have just celebrated July 4, a holiday that makes us think about freedom. The Sousa marches, the displays of fireworks, images of patriotism—these all evoke in our minds the great champions of liberty. “Give me liberty or give me death!”

I grew up when the United States lived under the shadow of threat from the Soviet Union. School days were punctuated by bomb drills and by lessons on the horrors of the Soviet regime. “You have no freedom! They can lock you up with no trial! Their press is controlled by the government! They encourage their citizens to turn each other in for any rebellious thinking—even having children turn in their parents!”

I could never understand how people could live under such restriction, why they didn’t chaff at the harsh control and, in the end, rebel against the oppressors. When I was in high school, though, I heard a talk a by a man who had been a missionary in Russia. He told us that freedom means different things to different people. That in Russia, people looked to the government to take care of them. The principles of communism were that they didn’t have to pay for health care or worry about food or fret over whether they would have a job or not. For the people there, these were elements of freedom. And if that meant that they had to live under an authoritarian regime, then so be it.

In the United States, of course, we have different definitions of freedom. We live under the adage of Benjamin Franklin: “They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety.” 

So what does this have to do with colon cancer? I think it is about attitude. Some people are diagnosed with cancer and become absolute tigers. They read up on the disease, learn of every acceptable and alternative therapy, research the best doctors, get second opinions, and third, and fourth. Others give themselves into the hands of their physicians, obediently following the path laid out before them by doctors they trust.

Which way is right? Is either path wrong? I tend to be of the first camp, so it is easy for me to embrace the idea of fighting tooth and nail. I know, through the many, many patients who the Colon Cancer Alliance has touched, that some treatment paths lead to better outcomes. Minimally invasive surgery can shorten hospital stays and reduce complications. Using a stint to repair a colon resection may reduce the need for ostomy. Being treated in a cancer center that utilizes a true multi-disciplinary team approach offers the best chance for successful management of liver metastases. 

I must also admit, however, that treatment and care are about more than just science. We cannot underestimate the value of receiving care in a place that is familiar, that is located nearby, that is staffed by people you know. 

Everyone wants the very best care. It may well be true, though, that different people interpret differently what that means. Isn’t it nice to have the freedom to choose?

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.

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.