Pat Steer

We are glad to welcome advocate Pat Steer to the Fight Colorectal Cancer Research and Treatment News.  She’s been living with stage IV rectal cancer since 2004.  A writer, she’s blogs about her life with cancer, training her beloved dogs, and her passion for good food at Life Out Loud.

Since my cancer diagnosis in 2004, my life has been full of choice and decisions. Cancer forces you to prioritize. Some days, it has seemed like cancer and treatment were calling all the shots in my schedule, changing my plans, and forcing decisions I didn’t want to have to make.

But I’ve made a few choices in the last eight years where I didn’t let cancer force my hand. I train and show dogs, and that’s very important to me. Early on, I decided to make attending my favorite dog shows a priority. I kept up my now-25-year tradition of camping with friends at a local show circuit. I entered a special event dog show held on New Year’s weekend, 2005 – three shows in 48 hours that wore me out, but was so worth the effort.  I covered Westminster in 2008 through 2010 for my column.

All of those decisions meant that sometimes I prioritized dog shows in spite of my treatment schedule. My oncologist, who once told me “I want you to live your life,” carefully moved my treatments around to accommodate the things I really wanted to do. After all, what good is surviving cancer if you can’t do the things you love?

At the same time, sometimes dogs shows and cancer just couldn’t fit together into the same time period. I’ve missed the chance to go to the national English Cocker Spaniel specialty twice now – once, because I was having liver resection and then again in 2011 due to intense treatment for a recurrence. Yes, I can prioritize, but cancer emergencies sure can mess up dog show plans.

There’s one other activity that I’ve made a choice to participate in each year: Fight Colorectal Cancer’s Call-On Congress.

Sometimes I’ve been on treatment or recovering from surgery. That meant I had to participate from afar by calling my congressmen and senators and visiting their local offices. But in 2010, I was able to attend Call-On Congress in person. I promised myself after that experience that as long as I was healthy enough to participate in person, I’d make attending Call-On Congress my first priority every year. And I’ve kept that promise to myself, that choice to make a difference, even when it meant giving up another trip, even if it meant skipping a dog show.

Why is making a trip to D.C. to meet with congresspeople and senators such a big deal?

Three reasons:

1. I gain great energy from meeting other survivors
2. I get a chance to stand close to the electricity of government in action.
3. Call-On Congress made me realize the power of the personal touch.

Every survivor has the opportunity to put an unforgettable face on colorectal cancer. In person, we can take this disease out of the dark, make it more understood, make it real in a way that emails and phone calls can’t duplicate. Our faces and our presence at Call-On Congress turns colorectal cancer into a living, breathing issue to the men and women who decide where the money goes in the Federal budget.

I want my congresspeople and senators, and those legislators I meet in the halls of the Congressional office buildings, to remember my face when they’re voting on funding for colorectal cancer screening programs and research. I want them to look at those line items in the budgets, and see the short woman in glasses who wore a FightCRC t-shirt under her business blazer, who smiled and directly explained why their support was so valued and so needed. I want to put a face on that number.

And the only way to put a face on colorectal cancer is to do it in person.

The deadline to register for Call-On Congress is this Sunday, February 5, 2012. Will you join me and the advocates from the other 50 states in putting a face on colorectal cancer? Will you choose to make a difference in 2012?

In an effort to help patients struggling with cancer expense, the Cancer Support Community has just released Frankly Speaking about Cancer: Coping with the Cost of Care.

You can order a free print copy of the book, read sections online or download it.

The book provides information for people without health insurance and, for those with insurance, help understanding how to manage costs covered by insurance and what might be necessary to pay out-of-pocket.

As a first step, patients are urged to take an active role in finding out just what their expenses for cancer care are likely to be before treatment begins.  Practical questions are included for insurance representatives, the health care team, and pharmacists.  In addition, there are questions to ask lawyers and tax accountants.

Practical tips for coping with the expenses from the book include:

• Get a notebook to record all of your expenses, conversations with the insurance company, doctors appointments, exams, and other pertinent information (date, time and with whom, what they said and contact information, how long spent on the call).
• Get an accordion folder to help you file things so you can find them easily.
• Pick a certain day to be ‘health care bill day.’ Use this allotted time to work on the task of keeping everything organized. This will help to compartmentalize the task and keep it from taking over your everyday life.
• Identify an easily accessible place in your house that will not be disturbed by others where you can store your bills, paperwork, and other items.

In addition Coping with the Cost of Care includes things to consider about working through treatment or how to get disability payments if working isn’t an option.

Contents of the book include places to go both nationally and in your community for financial help, insurance and patient assistance programs to help with the cost of prescription medicines, and an excellent list of resources for more information and assistance.

Kathy, who is a breast cancer survivor, said,

I would’ve liked to talk at the front end about the cost of care as opposed to waiting. I really think it would have been easier if we knew what was going to happen and what bills we were going to see coming in.

Frankly Speaking about Cancer: Coping with the Cost of Care is full of solid information, excellent questions, and practical tips.  And its free!

The headlines were almost as enticing as unwrapping a large bar of Godiva with hazelnuts.

• Eating chocolate can stave off bowel cancer, say scientists.
• Chocolate shown to protect against colon cancer: study
• Study Shows Chocolate Prevents Colon Cancer

As the news spread like chocolate melting in August from a medical journal article to a news release to online media to blogs to Twitter, I didn’t know whether to consider the rats who were fed cocoa for 12 weeks and had changes in their intestinal tract or that having diabetes increases the risk of dying from colorectal cancer by 30 percent or convincing evidence from the World Cancer Research Fund that maintaining a healthy weight is linked to lowering colon and rectal cancer risk.

Digging deeper into the research that was actually done:

• The study wasn’t done in humans but in rats who bred to be at high risk for colon cancer.
• The rats didn’t get to chow down on chocolate bars but were fed plain cocoa as 12 percent of their diets.
• After 8 weeks with half the animals eating extra cocoa, the rats were given azoxymethane (AOM) which induces colon cancer in susceptible rats.
• Four weeks later there were changes in some rat colons called aberrant crypt foci, a very early change that can lead to polyp formation.
• In the rats who were not fed cocoa, there were also changes in proteins that increase cell division and reduce cell death potentially promoting growth of tumors.
• Cocoa in these experimental rats reduced the risk of developing polyps and perhaps colorectal cancer at a very early stage. The study didn’t continue to see if the little guys actually got colon or rectal cancer.
  

Can we jump from plain cocoa in high-risk rats to chocolate, with its sugar and fat, in humans in an effort to prevent colorectal cancer?

And is that the best prevention strategy?

Given that we don’t eat cocoa powder alone but with added fat and sugar, the calorie intense treats should be only that — occasionally treats at the top of the food pyramid.  Surely we don’t want 12 percent of our daily calories to come from cocoa like the rat diet. Consider:

• Hershey bar:  210 calories, 13 grams of fat, 24 grams of sugar
• Two Godiva Truffles: 210 calories, 13 grams fat, 17 grams sugar

Bottom Line: What Really Can Prevent Colorectal Cancer?

• Experts say that positive lifestyle choices could cut the number of new colorectal cancer cases in the United States almost in half — a 45 percent reduction or 64,000 people who wouldn’t get colon or rectal cancer.  Recommendations from the American Institute for Cancer Research (AICR) include not smoking, cutting down on red meat, increasing physical activity, and staying lean.
• And the best way of all — colorectal cancer screening.  If everyone followed screening recommendations, we could prevent at least 60 percent of colorectal cancers.  Stop It in Its Tracks before those polyps ever turn to cancer.  That’s true prevention, not just reducing risk in rats.
  

A few last facts to consider:

• Americans eat 2.8 billion pounds of chocolate annually, about half of all the world’s supply.  It costs us $7 billion dollars every year.
• Annually we eat 12 pounds of chocolate per person.
• The fiscal year 2012 budget for the National Cancer Institute is a little over $5 billion.
• AND in 2012, 143,460 men and women in the United States will be diagnosed with colon or rectal cancer and 51,690 will die.

There’s lots of work to do, and chocolate truffles are not the answer.

Get Screened and Get Your Friends Screened.

But side effects are more difficult.

After a randomized clinical trial comparing Avastin with XELIRI (Xeloda, irinotecan) to Avastin with FOLFIRI (5-FU, leucovorin, irinotecan), researchers concluded that excessive side effects made using the XELIRI combination unwise.

Efficacy-wise there were no sigificant differences between the two regimens for:

• median progression-free survival(10.0 for FOLFIRI and 8.9 months for XELIRI)
• overall survival (25.7 and 27.5 months)
• response rates (45.5 and 39.8 percent)

However diarrhea, fever due to low white cell blood counts, and hand-foot syndrome were significantly more common in patients treated with XELIRI. They also had more treatment delays and dose reductions, and discontinued treatment because of side effects more often.

J Souglakos and his colleagues concluded,

The progression-free survival of FOLFIRI-Bevacizumab is not superior to that observed with the CAPIRI-Bev regimen. CAPIRI-Bev has a less favourable toxicity profile, requiring dose reductions, in order to be considered as an option in first-line treatment of patients with metastatic colorectal cancer.

SOURCE: Souglakos et al., British Journal of Cancer, January 12, 2012.

Moscone Center

We’re getting ready for the 2012 Gastrointestinal Cancers Symposium next week at the Moscone Center in San Francisco.

Kim Ryan, Nancy Roach, and I will be there checking out the latest colon and rectal cancer prevention and treatment research and talking with leaders in the colorectal cancer field.

Colon and rectal cancer is featured on Saturday, January 21, but we’ll also be looking at research results for cancers in the upper digestive tract, liver, and pancreas on Thursday and Friday, visiting exhibits, and meeting with members of the Fight Colorectal Cancer Medical Advisory Board.

• Watch for our reports from the Symposium on the Fight Colorectal Cancer Research and Treatment News.
• Follow our tweets on Twitter @FightCRC.
• In February, join us and Dr. Dan Sargent from the Mayo Clinic for a Report from the 2012 GI Cancers Symposium webinar.

Each year, ASCO gives a few posters special mention as Merit Awards.  We’ll be stopping by to see those related to colorectal cancer.

• Association of NCCN guideline adherence with improved survival in high-risk stage II and stage III colon cancer.  Genevieve Boland, MD, PhD, University of Texas M. D. Anderson Cancer Center.
• A 21-year analysis of lymph node trends in colon cancer: Do quality measures really matter? Danielle Hari, MD, John Wayne Cancer Institute at St. Johns Health Center.
• Association between delays in adjuvant chemotherapy for stage III colon cancer and increased mortality. Alex Haynes, MD, MPH, University of Texas M. D. Anderson Cancer Center.
• Lymph node metastasis in patients with early pathologic T-stage rectal cancers: What does local excision leave behind? Maria Russell, MD, University of Texas M. D. Anderson Cancer Center.

Stay tuned for more breaking research information as we bring it to you.

You can do a lot to prevent colon and rectal cancer this year . . . and in the future.

Number One Resolution — Be screened for colorectal cancer if you are 50 or over, earlier if you are at higher risk.

In addition you can reduce your  colorectal cancer risk by:

• Exercising regularly.
• Keeping your weight normal.
• Eating less red meat, no processed meat at all, and mostly plant-based foods.
• Increasing the amount of fiber in your food.

Start on Monday, January 2, and review your progress toward better diet and exercise every Monday all year.  Research from leading public health schools for The Monday Campaigns shows that most people view Monday as a day for fresh starts.  They were most likely to begin exercising, start a diet, or stop smoking on Monday.

For the latest evidence on food, nutrition, and physical activity and their influence on colorectal cancer, read the World Cancer Research Fund’s Continuous Update Project focus on colorectal cancer.

Happy, healthy New Year!

Won’t you help make our dream of a world free from colorectal cancer come true in 2012.

• Raise awareness that screening prevents colorectal cancer. Make sure you, your family, and your friends are screened for colorectal cancer as soon you reach 50 — earlier if you are at higher risk.
• Tell your friends living with colon or rectal cancer that they can call the Answer Line with their questions and concerns.
• Join us for supportive discussions in the Fight Colorectal Support Community and let others know they’ll find help there.
• Come to Call on Congress and make sure that programs and funding for colorectal cancer prevention and research are strong and growing.
• Finally, do one last, very important thing in 2011 – Make a gift to Fight Colorectal Cancer and ensure that our programs and research grants continue in 2012 and until we end suffering and death from colon and rectal cancer.

Have a great New Year — and get behind the cure.

But, as rates began falling in the 1980′s for both blacks and white patients, decreases for whites were substantially greater than those for blacks.  Between 1985 and 2008, mortality rates for whites with colorectal cancer fell 40 percent, while black rates declined by less than 20 percent.

The decrease in black death rates was higher than those for whites at every stage at diagnosis, but strikingly different when cancer had spread to distant sites.   For whites whose colon or rectal cancer was first found at stage IV, death rates fell by more than 30 percent, while black rates declined by less than 5 percent.

Over time, five year survival after regional and distant diagnoses grew for white patients but remained essentially unchanged for blacks.

Anthony Robbins, MD, PhD and his team from the American Cancer Society analyzed information from the Surveillance, Epidemiology, and End Results (SEER) Program looking for changes in colorectal cancer mortality rates by race and stage at diagnosis from 1985 through 2008.  They found that 60 percent of the disparities between black and white rates were due to late stage diagnosis.

They reported decreases in colorectal cancer death rates between 1985-1987 to 2006-2008 by stage:

Once cancer had spread regionally to lymph nodes or to distant organs, five year survival was lower in blacks than whites. Survival didn’t change significantly over time for blacks over time for regional disease, although there was a small increase that began in 2002 for metastatic cancer.

Percentage of patients living five years or more after diagnosis:

In discussing their observations, Dr. Robbins and his group looked for possible reasons for the disparities that continued even as death rates dropped and survival improved.  Among factors they considered were:

• Less screening for blacks than whites.  Although screening rates have improved for both blacks and whites, colorectal screening for blacks continues to lag behind.
• Differences in treatment for both colon and rectal cancer.  Blacks were less likely to receive adjuvant chemotherapy for stage III colon cancer or surgery for rectal cancer.  They also were treated less often at high volume, high quality cancer centers and got modern chemotherapy less often.
• Although there may be biological reasons for disparities, lack of access to prevention and quality care is more likely, Robbins writes.  In clinical trials where all patients had the same treatment, there were no differences in outcomes between blacks and whites.

Dr. Robbins and colleagues concluded,

In conclusion, colorectal cancer death rates have decreased for each stage of the disease in both whites and blacks since 1985, although for every stage, the decreases were smaller for blacks, especially for distant-stage disease. In the most recent time period, disparities in regional-stage and distant-stage mortality rates accounted for approximately 20% and 60% of the overall black-white disparity, respectively. Efforts to reverse the overall racial disparity in CRC mortality must target late-stage disease.

In an editorial accompanying the article, Electra Paskett, PhD, from the Ohio State University wrote,

In summary, disparities in colorectal cancer outcomes exist, and we know why. It is time to start addressing these disparities so that good health can be something everyone can experience.

Dr. Paskette stressed the importance of:

• Improving screening rates among blacks by making sure insurance covers screening for everyone and that health providers have systems in place and incentives to recommend screening to their patients.
• Making sure that there are not financial barriers to prompt, quality treatment when cancer is diagnosed.
• Using patient navigators to improve use of preventive screening and ensure access to prompt quality care.
• Enrolling more minority patients in clinical trials, including using families and communities to improve accrual.

SOURCES:  Robbins et al., Journal of Clinical Oncology, Early Release, December 19, 2011.

Paskett, Journal of Clinical Oncology, Early Release, December 19, 2011.

What Can Advocates Do?

Patient advocates can play an important role in narrowing the gap in colorectal cancer death rates between blacks and whites in the United States. They can:

• Work to make sure that the full range of colorectal cancer screening options are available to everyone without discrimination due to insurance status, income, race, ethnicity, or the community where they live.
• Insist that every American have full access to insurance coverage and a means to pay for quality evidence-based cancer care.
• Raise awareness of the value of screening to prevent colorectal cancer in ways that are meaningful to minority communities.
• Advocate for funding and programs to provide patient navigation.
• As research advocates, increase enrollment of minorities in cancer clinical trials.

The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal.

Among other things, the legislation

• Strengthened the National Cancer Institute.
• Made the NCI Director a Presidential appointee.
• Provided $400 million to the NCI for 1972.
• Put funding for NCI into a direct bypass budget.
• Gave NCI the power to establish cancer centers and fund research grants.

In 1975 half adults and children with cancer died. Today nearly 7 out of 10 adults and 8 out of 10 children will be alive five years after they are diagnosed.

So are we winning?

Yes

• Between 1990 and 2007, cancer death rates went down 22% for men and 14% for women.
• Over a similar time, death rates from colorectal cancer went down 33.4% for men and 28.4% for women.
• From a single, fifties-era chemo drug for colorectal cancer, we now have 7 approved drugs and targeted agents.
• Colorectal cancer screening, brand-new in 1970, now is a major force in preventing colorectal cancer.
• Chemotherapy after surgery for local and regional colon cancer has pushed the cure rate up to 75%.
• Better imaging and better surgery is now curing more metastatic colorectal cancer.

No

• In 2010, 571,950 people in the United States died from cancer.  That’s more than one person every minute of every day.
• This year 49,380 men and women will die from colorectal cancer, nearly 6 people every hour.
• While fewer people are smoking, obesity is increasing and people are sitting more and exercising less.
• Essentially flat budgets for the NCI since 2003 have meant a loss in research purchasing power of over $1 billion.

“In order to win the war against cancer, we must fund the war against cancer.”  President George W. Bush, September 18, 2002.

Maybe

Have we been asking the wrong questions?

In a recent interview with Medscape Today, Harold Varmus, MD, Director of the National Cancer Institute said that the war on cancer metaphor is no longer valid,

First of all, I think we’ve changed the metaphor. It’s inaccurate, in my view, to think of a war on cancer as though cancer were a single, individual enemy, nor is the metaphor of war exactly right. We now understand that cancer is actually a constellation of diseases, many different diseases arising in different tissues. Indeed the number of diseases that cancer represents has only multiplied over the last 40 years as we understand more and more about how cancers arise.

Second, we understand that cancer is an outgrowth of some fundamental principles of biology, how genes control our development, how development goes awry, how different genes can influence the initiation and progression of cancer.

For more information on progress toward ending suffering and death from cancer:

• American Society of Clinical Oncology CancerProgress.Net Timeline
• American Association for Cancer Research Cancer Progress Report 2011: Transforming Patient Care Through Innovation
• American Cancer Society Cancer Facts and Figures 2011
• NCI Video: President Nixon signing the National Cancer Act of 1971

In the AACR Cancer Progress Report 2011, AACR leaders write,

We live in an unprecedented time of scientific opportunities, and our commitment to prevent and cure cancer has never been stronger.

Fight Colorectal Cancer agrees.

While new colorectal cancers in older people have fallen consistently since 1985, rates for people under 50 have risen, particularly for rectal cancer.

Even more concerning, young people with colon cancer were diagnosed at later, less curable stages than those 50 or older. Almost two-thirds had a stage III or IV cancer compared to half of people diagnosed at a later age.

In the Archives of Internal Medicine, Nancy You, MD, of MD Anderson Cancer Center in Houston, and her colleagues ask, “Young-Onset Colorectal Cancer: Is It Time to Pay Attention?”

You and her team analyzed colon and rectal cancer cases in the National Cancer Database diagnosed in the ten years between 1999 and 2007.

About 1 in 10 were diagnosed before the age of 50 — 64,068 of 588,869 in the total database.

After 2001, there was an average annual increase of 2.1 percent in young onset colorectal cancer compared to a decrease of 2.5 percent yearly for those 50 and older. Rectal cancer increased even more rapidly in younger patients at an average annual change of 3.9 percent.

The median age of younger patients was 44, with 3 out of 4 (75.2 percent) diagnosed in their forties.

Cancer that had spread to either regional lymph nodes (stage III) or to distant organs (stage IV) occurred in:

• 63 percent of young colon cancer patients.
• 57.7 percent of young patients with rectal cancer

Compared to colorectal cancer in older patients, young-onset cancer occured more often in

• the rectum or the lower (distal) colon (69% vs 57.7%)
• patients who were uninsured or had Medicaid (16.5 % vs 4.7%)
• patients who lived in the south or western US (56.2% vs 50.3%)

Younger patients were also more likely to have mucinous or signet-ring subtypes and poor differentiation.

Concluding, Dr. You and her team wrote,

These data argue for heightened awareness of these concerning trends in young-onset CRC. Symptomatic young patients should undergo timely sigmoidoscopy at a minimum, if not a full colonoscopy. Identifying high-risk cohorts for targeted screening should be a priority.

What’s Behind the Trend?

Dr. You and her colleagues focused on lack of access to health care and a lack of awareness of both young patients and their doctors of the importance of symptoms of colon and rectal cancer. Commenting on their analysis, they wrote:

In the absence of routine screening, contributing factors to these trends may include

(1) a reluctance on the part of young adults to seek medical care.

(2) the large percentage of young adults without insurance or ready access to care.

(3) an underappreciation of the increasing risk for young-onset CRC, leading clinicians to overlook or dismiss symptoms that are nonspecific but may be consistent with CRC (ie, rectal bleeding, abdominal pain or cramping, change in bowel pattern).

They also commented on screening changes:

Finally, the predilection of young-onset CRCs for the distal colon and rectum identify these as high-yield anatomic regions for endoscopic evaluation in symptomatic patients and as potentially cost-effective targets for screening programs in presymptomatic young adults.

The Annual report to the nation on the status of cancer published in 2010 was concerned that diet, lack of physical exercise, and obesity may be an important factor and one that may reflect in the future for people over 50 as well.

Being overweight and failing to exercise are adverse trends that appear to increase risk for CRC, especially colon cancer. An estimated 33% of US adults are overweight, and another 34% are obese. Increasing CRC incidence among young adults (aged <50 years) may bean early indicator of the adverse impact of these risk factors.

What can young people do to reduce their risk of colorectal cancer?

Given that current analyses show that the benefits of colorectal cancer screening for average risk adults don’t begin to outweigh screening risks until age 50, young people need to:

• Maintain a healthy weight and increase physical activity.
• Reduce red meat and avoid processed meats. Eat more whole grains, fruits, and vegetables.
• Consider their family risk and get screened earlier if they have a family history of colorectal polyps or cancer.
• If they have ulcerative colitis or Crohn’s disease, follow their gastroenterologist’s directions for regular colonoscopies and biopsies.
• Know the symptoms of colon and rectal cancer and get to a doctor right away if they have any of those symptoms.
• Never accept a doctor dismissing or downplaying symptoms without a full evaluation including a colonoscopy, or, if resources are simply not there, a less costly sigmoidoscopy.

SOURCES: You et al., Archives of Internal Medicine, Online First December 12, 2011.

Edwards et al.,Annual report to the nation on the status of cancer, 1975-2006, featuring colorectal cancer trends and impact of interventions (risk factors, screening, and treatment) to reduce future rates., Cancer, February 1, 2010.