Colorectal Cancer Blog

"...I don't know who to turn to..."

A couple of weeks ago I sent out a letter asking people to make a donation to support the mission of the Colon Cancer Alliance.  The response has been gratifying and humbling.   Then a letter came that has stuck with me.  Here is part of what the letter said:

 “…you can find me to ask for money…but where were you when I had cancer as was so desperate I didn’t know where to turn?  From the chemo or radiation or the cancer I was out of my mind.  I desperately needed help but couldn’t find any.  I didn’t know where to turn.  Even still today as I suffer from the consequences of my rectal cancer I don’t know who to turn to.  I feel so alone.   I keep reading about these wonderful organizations who help people with cancer, yet my husband and I are alone.  I spend a great portion of my life crying these days, trying to figure out what to do next.”

I don’t know this person’s story.  They are in our records, so at some point they were in touch with our organization.  If they called our Help Line I am sure they were offered support and information, even the opportunity to be assigned a “buddy” with a similar diagnosis to talk to.  Did this person attend our conference or a seminar and never make further connections?  Did they hear about us and ask to be added to our newsletter list, but did nothing more?  Or—and this is what worries me most—did they try to reach us and we didn’t respond well enough?

The story speaks to the core of what we are trying to change.  Cancer is an isolating disease, and colorectal cancer is particularly isolating.  We work hard to get out this simple message:  You are not alone!  Clearly, we must do more to communicate this.  And we are working on it, in four key ways:

1.         Focus on customer service.  We must return calls quickly and be as responsive as possible to everyone who contacts us.  Our workload is heavy, and the demands are great, but this must be a priority.

2.         Accelerate the growth of a strong volunteer network.  CCA volunteers are a fantastic bunch, working at local health fairs, calling other patients, sharing information and ideas.  We need more and more volunteers to support people like the patient who wrote this letter, and we must do all we can to recruit, train, and encourage those volunteers.

3.         Expand the online community.  Earlier this year we created a special web site, www.mycrcconnections.org, that is a virtual community for people affected by colorectal cancer.  On this site, patients and caregivers connect with each other around specific issues or just the general idea of dealing with cancer.

4.         Undy 5000.  No-one with this diagnosis should ever feel alone!  The isolation comes, in part, from the fact that colorectal cancer has not received the same level of recognition as other diseases, despite the fact that every year as many people die of this cancer as die of breast cancer and AIDS combined.  In a few days, the first of a series of Undy 5000 5k run/walk events will take place.  In this event we will give out boxer shorts instead of t-shirts, and will encourage everyone to run in their boxers.  We do this for one reason—to generate attention and conversation.  Maybe through the Undy 5000 we can help more patients understand that others are going through their same experience.

Is this enough?  Of course not.  It’s never enough.  But it is a start. 

I am deeply grateful to this patient for articulating their story.  It is another reminder of who I work for, another bit of motivation to work harder, work smarter, be more compassionate, be more committed.

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….