You think we’ve made a lot of noise during this Colorectal Cancer Awareness month?

We’re only going to get louder. On Monday morning, Fight Colorectal Cancer survivors and advocates will ring the opening bell on NASDAQ—representing 1.2 million colorectal cancer survivors in the U.S. who are only going to get louder as our numbers grow.

Good news or bad news? Both, really. As Boomers age, more Americans will get cancer—and with better treatment and earlier diagnosis, there will be more cancer survivors.

In just 10 years, the number of cancer survivors in the U.S. will increase by nearly a third—to almost 18 million survivors of all types of cancer in 2022. That population explosion and other eye-opening facts are reported in “Cancer Treatment & Survivorship Facts & figures 2012-2013,” a 35-page report just released by the American Cancer Society.

Some facts about colorectal cancer:

• Colorectal cancer is the second most common in the nation’s current 13.7 million cancer survivors. (Among men, 43% are prostate cancer survivors, with colorectal cancer second at 9%. Among women, 41% are breast cancer survivors, with colorectal and uterine cancer second at 8% each.)
• Almost half (45%) of all cancer survivors are 70-plus years old. For colorectal cancer, the median age for diagnosis is 70.

Survivor care needs to catch up

Survivors cover a wide spectrum—from those who’ll never have another trace of the cancer to those who live with continuous therapy to keep the cancer controlled.

Yet “many survivors, even among those who are cancer free, must cope with the long-term effects of treatment….As more people survive cancer, it is vital that healthcare providers are aware of the special needs of cancer patients and caregivers,” the study’s senior author Elizabeth R. Ward, Ph.D., told Reuters Health News Service .

But a 2012 study presented at last summer’s (June 2012) ASCO annual meeting found that only 22% of 1000 primary care providers correctly identified peripheral neuropathy—which can persist for months, years, or permanently–as a late effect of the commonly used chemotherapy Eloxitan (oxaliplatin).

“Most long-term survivors of colorectal cancer report a very good quality of life,” the American Cancer Society report noted,  but some survivors will have bowel problems, and as many as 40% of those treated for local or locally advanced colorectal cancer (which has invaded nearby organs) will have a recurrence.

Delayed diagnosis: so much more to do

Of the 10 most common cancers, only lung and non-Hodgkin lymphoma had a higher percentage of new cancer cases diagnosed at the regional or metastasized stages, according to the new report.

During the 2001-2007 time period, only 39% of colorectal cancers were diagnosed when it was still localized, when the 5-year survival rate is 90%. A full 20% (and 24% among African Americans) were diagnosed when the disease had already spread (metastasized), when the average 5-year survival rate hovers at 12%.

Take-away for colorectal cancer survivors

• Whether you’re discharged as “free of cancer” or still under active treatment, be sure your oncologist sends complete information to your primary care provider.
• Develop and understand your own “survivorship plan.” (Read here for specifics.)
• Help us improve those statistics–real people–diagnosed late instead of early when this cancer is curable: All year long, educate your family, friends, neighbors, political representatives about the need to get screened for colorectal cancer.

Sources: “Cancer Treatment & Survivorship Facts & figures 2012-2013,” American Cancer Society, March 2013;  “Number of US Cancer Survivors to Increase by a Third by 2022,” March 20 2013 Reuters, and “Better Information Needed for Primary Care Providers Who Treat Cancer Survivors,” June 15 2012 ASCO Post.

Tips From a Member of Our Medical Advisory Board

Al B. Benson III, MD, FACP FASCO is Professor of Medicine, Feinberg School of Medicine,  and Associate Director for Clinical Investigations, Robert H. Lurie Comprehensive Cancer Center, Northwestern University

One of the nation’s most respected experts in colorectal cancer, Dr. Benson has supported and worked with Fight Colorectal Cancer for years as an active member of our Medical Advisory Board.

Written by Dr. Al Benson, March 18 2013, Chicago, Illinois

Although March is Colorectal Cancer Awareness Month, this disease is so frequent yet in most cases preventable that we should be striving every month of the year to make even more people aware of the importance of colorectal cancer and colorectal cancer screening. The good news is that we are seeing a trend that showing more people are getting screened and more people are surviving this disease. Even so, we have much more work to do to prevent and treat colorectal cancer.

Important information to know – from screening to diagnosis for colorectal cancer:

1) Know your family history. In some cases, colorectal cancer risk is inherited and the genetic risk can be passed on to generations within a family. For those with a risk for inherited colorectal cancer, genetic counseling and testing is strongly recommended. Also if you have an immediate family member who has had colorectal cancer, your risk for developing the disease is greater. Let your doctor know about the details of your family history. If you are unsure of your family history, discuss it with your relatives to be as complete as possible.

2) If you are of African-American descent, you are potentially at higher risk for developing colorectal cancer and screening should begin earlier, at age 45.

3) There is growing recognition that obesity, diabetes and lack of exercise are contributing factors to the risk of developing colorectal cancer and these risks should also be discussed with your doctor.

4) Talk with your doctor if you experience bleeding from the rectum. Many people assume bleeding is “just hemorrhoids,” which might be true, but it also could be a sign of colorectal polyps and/or cancer. Discuss any bleeding with your doctor as well as other symptoms including change in bowel habits (e.g., recent but persistent diarrhea and or constipation), persistent abdominal pain, weight loss or loss of appetite, or increasing fatigue.

5) If you are diagnosed with colorectal cancer, make sure you ask which members of the medical team will be important for your care. A gastroenterologist, surgeon, medical oncologist, radiation oncologist (for rectal cancer), nurse, nutritionist, psychologist, social worker, financial counselor, genetic counselor are some examples of team members who you may really need to help with your diagnosis and treatment.

6) Ask if you are a potential candidate to participate in a clinical trial. All of our current therapies and advancements in the treatment of colorectal cancer have come about because people through the years participated in a clinical trial. Oncologists consider clinical trials to be one component of the standard of care. Further advances in colorectal cancer treatment will require many people willing to enroll in our clinical trials.

7) There are resources available for you. Fight Colorectal Cancer has great information available for you. The National Comprehensive Cancer Network (NCCN) has created guidelines for treatment used around the world by health care professionals. There is a patient version of colorectal cancer guidelines  that you can obtain on the internet and bring to your doctor.

I hope some of these tips will offer you and your family some additional guidance as we continue our efforts to control this common cancer.

Jennifer Bretsch – Alexandria, Virginia

by Carlene Canton

Jennifer Bretsch lost her friend Shawn Felty to colon cancer when he was only 39 years old. His fight, his grace and his courage inspired her and changed her life.

Shawn was diagnosed with stage IV colon cancer and fought valiantly for two years. Jennifer was by his side through the surgeries and chemotherapy. She encouraged him, researched treatments, and attended many of his appointments.

Shawn passed away two years after his diagnosis. After his death, Jennifer felt compelled to find a way to continue fighting for improvements in education, awareness, screening, research and funding that would make a difference. Because Shawn had Crohn’s Disease, a condition that put him at higher risk for colorectal cancer, Jennifer wanted to work with an organization that researched risk factors as well as treatment options. With a background in national health care initiatives she knew she wanted to work with an organization that was passionate, credible and responsible.

“I did my homework” she says. “And when I looked at Fight Colorectal Cancer I saw immediately how well organized this group was and the difference it was making. I saw that the organization was an excellent steward of its financial resources. It was smart and forward looking, and it was attracting passionate advocates, patients, and survivors.” She made arrangements to take part in her first Call-on Congress in 2010.

“I was tentative,” she recalls. “I was not at all sure I was comfortable going to legislators and telling my story. But I discovered that when you’re locked arm- in- arm with other advocates taking life-saving messages to elected officials with the goal of bringing about change, it’s very powerful.  Colorectal cancer is preventable but awareness is essential. When you hear so many stories about people like Shawn who did everything they were supposed to do and still died from this disease it’s gut wrenching.”

Now 3 years later, Jennifer, 39, sits on Fight Colorectal Cancer’s Grassroots Advocacy Committee** and serves as a mentor, reaching out to others coming to Call-on Congress for the first time.

“I find myself going back to my first experience and those first emotions,” she says. “I tell the newcomers that within hours of arriving they will meet and bond with other advocates in a way they may not have ever done before. And within a very short time they will know that joining with Fight Colorectal Cancer is one of the best decisions they have ever made.”

She says that, knowing full well that many of the advocates are active patients and survivors – and she is not. And yet, she feels immensely welcomed. “All the patients and survivors that take part have someone like me in their lives and they clearly and dearly appreciate my efforts. I have made so many friends.”

“Now when I go to Call-on Congress it’s not just for Shawn,” Jennifer says. “It’s for all the people I have met along the way, like Rose and Eric Hausmann, Tom Foeller, Cindy Robinson, and the late Kate Murphy and Erica Paul. And I realize that meeting them, knowing them, is the continuing gift of having known Shawn. The satisfaction that I am making a difference is Shawn’s ongoing gift to me.”

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**The Grassroots Action Committee is the catalyst of our grassroots advocate community, and helps Fight Colorectal Cancer achieve our strategic goals and objectives by empowering grassroots advocates across the country. These active volunteers serve a one-year term and help us achieve our strategic goals and objectives.

Committee members are selected via an application process and must have attended the Call-on Congress. If you are interested in learning more about the Grassroots Action Committee or serving on the Committee contact us.

Have a question or need more information about ways to get involved? You can contact any member of the Grassroots Action Committee by emailing Advocacy@FightCRC.org.

Some people who go in for a routine screening colonoscopy (fully covered by most insurance) can end up with a surprise bill of several hundred dollars, if the doctor detected and removed one or more polyps.

Under current law, Medicare beneficiaries must pay a coinsurance when their screening colonoscopy also involves the removal of polyps or other tissue—because it is reclassified as a “treatment” procedure. Additionally, while current law also requires most private payers to cover colorectal cancer screenings without cost-sharing (copays/ coinsurance/ deductible), private payers have interpreted the rules differently. Some private payers waive cost- sharing when a screening involves the removal of polyps or other tissue; others do not.

Two weeks ago, we scored a partial victory. The Department of Health and Human Services issued a regulation change stating that private insurance companies cannot charge patients for the removal of a polyp during a screening colonoscopy. The HHS ruling this week was a result of a very productive meeting that we had at HHS last summer with a cooperative group of patient advocacy organizations and professional doctors’ associations.

This is progress, but this ruling doesn’t fix the Medicare policy—yet.

This is what Fight Colorectal Cancer does: Fight for you

For those of you who are new to Fight Colorectal Cancer, you’ll quickly learn that one of our strengths is being a respected, well-known voice in Congress and key federal agencies (e.g., National Cancer Institute, the FDA, Centers for Medicare and Medicaid Services, Dept. of Defense). Our staff and advocates monitor events 24/7 and work behind the scenes—often for months or years–on tedious details and complex issues with the decision makers. We’ve been partnering with other organizations since 2012 on this particular, knotty problem.

In last year’s Congress, Fight Colorectal Cancer was instrumental in the introduction of legislation in the House (H.R. 4120) that would correct Medicare law, and has lobbied the Department of HHS for a change in regulation.

We are working with our congressional allies to see if this HHS ruling may somehow spur the Medicare fix, while also continuing to work toward the reintroduction of a House bill (and a Senate bill) to get the job done in the 113^th Congress.

As soon as we get new House and Senate bill numbers for this year, we’ll issue an  Action Alert here so you can begin lobbying your congressional representatives.

What this means for patients:

• If you have private insurance, have a routine screening colonoscopy (not ordered to check out symptoms, or as a result of a positive stool blood test); and have precancerous polyps removed, your insurer cannot charge a copayment. (The HHS has ruled that removing precancerous polyps is an “integral part of a colonoscopy.” Under the Affordable Care Act, no copays can be charged for approved screening tests.)
• If you have private insurance, and your doctor determines that you are in a high-risk category (e.g., you have a family history of colorectal cancer) that is covered by screening guidelines, the same rules apply: No copayment for a screening colonoscopy that includes removal of precancerous polyps.
• If you have Medicare coverage, you may still be charged a copayment if a screening colonoscopy includes removal of a polyp.
• If you have either private or Medicare coverage, it appears that a followup colonoscopy ordered because of a positive FOBT (stool test for blood) is not considered a screening procedure, and is not covered by this rule change.

 Yes, it’s complicated. If you have questions or concerns, please call our Answer Line at 1-877-427-2111.

For more information:

* Click here for clarifications of Affordable Care Act coverage of screening, including colonoscopy:

* Read here about Fight Colorectal Cancer’s 2013 Legislative goals.

* For tools on making your voice heard, our 2012 Advocacy Handbook  is a great start. A 2013 version for this year’s Congress is in final production. Stay tuned.

Tom Foeller – Portland, Oregon

by Carlene Canton

Tom Foeller joined the Grassroots Action Committee* this year but he is certainly no stranger to Fight Colorectal Cancer or to cancer itself. Diagnosed with stage III rectal cancer in 2006, Tom fought long and hard for the strength and health he enjoys – and puts to good use – today. Now as a four-time participant in Call-on Congress, a former regional director for Fight Colorectal Cancer and an active member of the Fight Colorectal Cancer Oregon contingent, thoughts of how to reach and help colorectal cancer patients and how to motivate congressional change are never far from Tom’s daily thoughts.

After diagnosis, Tom devoted all his energy and resources to beating cancer which he did with three surgeries and a year of treatment including surgery, radiation and chemotherapy .He spent a large part of his recovery on his living room couch recuperating with his dog Seco at his side. Retiring two years early from his job at Bonneville Power Administration in Oregon allowed him to dedicate his energy to his recovery.  And after recovering he didn’t stop but kept fighting. This time not only for his own health but for the legislative changes needed to make sure that screening could catch colorectal cancers earlier and other families would not have to suffer as his did.

His work has been inspirational to many, including his wife Meri and his children and three grandchildren.  He has developed and maintained political contacts in Washington, DC and at home in Oregon. Some of his state and national representatives know him and his story. He even discussed the importance of health care over lunch with President Obama and 2 other Vietnam-era Veterans on July 24, 2012. Legislators know and respect that he represents others who share some of his cancer-related experiences but can’t yet be the voices or the citizen lobbyists they want to be. He speaks for many and many listen.

When he is not fighting the Fight CRC fight for colorectal cancer prevention, screening and care, Tom is enjoying an active retirement. In  2007 he got the words every cancer patient wants to hear and today he remains cancer-free more than seven years after his first surgery. Tom is also very active on several boards and committees in his area, saying it’s a pleasure to be able to give back to the community.

“Meri and I have been enjoying our family and friends,” Tom reports. “I’ve been playing city-league softball for three seasons now, and basketball for four. We’ve taken some long distance sailboat voyages and had some great vacations. We have enjoyed dance and Spanish lessons, yoga, and walking our dog. We bought an ocean-going sailboat and will be heading north soon.

“My disease, in a weird way, brought ALL these things to the forefront of my life. I’m living my dream, have a “second wind”, and appreciate every minute of it! I thank God, Meri, my doctors and health care workers, family and friends, and Seco, too, for all you’ve done for my life!

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*The Grassroots Action Committee is the catalyst of our grassroots advocate community, and helps Fight Colorectal Cancer achieve our strategic goals and objectives by empowering grassroots advocates across the country. These active volunteers serve a one-year term and help us achieve our strategic goals and objectives.

Committee members are selected via an application process and must have attended the Call-on Congress. If you are interested in learning more about the Grassroots Action Committee or serving on the Committee contact us.

Have a question or need more information about ways to get involved? You can contact any member of the Grassroots Action Committee by emailing Advocacy@FightCRC.org.