Cancer PreventionWorks: April 2019

Issue: April 2019

ONE LIFE TO LIVE Cervical cancer survivor Kara Million shares her story to bring awareness to HPV screening and prevention

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INSIDE FOUNDATION NEWS

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IN THE WORLD OF CANCER

Prevent Cancer Foundation highlights ®

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Advocate at any age: Molly’s story It’s time for gyms to practice what they preach

PREVENTIVE MEASURES AND GENERAL WELLNESS

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Gamers level up for cancer prevention

ADVOCACY NEWS

One life to live

New 23andMe test: Unintended consequences for cancer prevention

HEALTHY EATING AND FITNESS

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Healthier together: How to create a wellness group

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Recipe: Smoothie Bowl

MAKE A DIFFERENCE

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You can help us complete the picture preventcancer.org 1 Your future & philanthropy

CEO’s

Corner Dear Readers, Spring signifies the emergence of life, so it’s the perfect time to celebrate life through cancer prevention and early detection.

In this issue, you’ll read about what the Foundation has been doing to Stop Cancer Before It Starts!®. One major victory was retaining cervical cancer co-testing as part of USPSTF recommendations.

The importance of the HPV vaccine and testing is echoed in an emotional account of the fight of her life from two-time cervical cancer survivor Kara Million.

As you celebrate life, we encourage you to rejuvenate your wellness routine with new challenges, be aware of what at-home genetic testing can tell you, and advocate to rid your gym of tanning beds.

As we look to the future, we hope to expand our ability to provide lifesaving cancer prevention and early detection to all populations. Thank you for giving life to our mission— we can’t do it without your support.

Carolyn Aldigé Founder and CEO 2 Cancer PreventionWorks: April 2019

PREVENT CANCER FOUNDATION® HIGHLIGHTS 10TH ANNUAL PREVENT CANCER HEALTH FAIR AND 5K WALK/RUN: Despite the looming threat of hurricane weather, everyone stayed dry and the Health Fair and 5k were a success, raising a record $200,000.

SAVE THE DATE: 2019 Health Fair and 5K Walk/Run is November 3!

26TH ANNUAL CONGRESSIONAL FAMILIES ACTION FOR CANCER AWARENESS AWARDS LUNCHEON: The Prevent Cancer Foundation’s Congressional Families Cancer Prevention Program honored Pittsburgh Penguins player Phil Kessel, CBS This Morning co-host Norah O’Donnell and congressional spouses Kasey Crowley (spouse of former Rep. Joe Crowley) and Helen Green (spouse of former Rep. Gene Green) for their efforts in cancer prevention.

NO-SHAVE NOVEMBER: The month-long awareness campaign encouraged people to ditch their razors for cancer awareness. No-Shave November was launched by the Hill family, who lost their father to colon cancer. In 2018, the campaign raised $1.5 million for three charities, including the Prevent Cancer Foundation®. We are beyond grateful to be one of the beneficiaries.

QUANTITATIVE IMAGING WORKSHOP: On November 5-6, the Foundation hosted experts and leaders in imaging science, policy and practice at the Quantitative Imaging Workshop XV: Lung Cancer, COPD and Cardiovascular Disease. The Workshop brought together individuals who are passionate about the accuracy and uptake of CT screening for the early detection of lung cancer, COPD and cardiovascular disease.

Sharon Y. Eubanks, lead council in the federal tobacco litigation, United States v. Philip Morris USA, et al., was honored with the James L. Mulshine, M.D. Leadership Award.

MCLAREN NORTHERN MICHIGAN FOUNDATION VISIT: On November 9, the Prevent Cancer Foundation® visited McLaren Northern Michigan Foundation, recipient of a $25,000 grant from the Foundation to provide lung cancer prevention education and screening services.

Lisa McGovern, Executive Director of the Foundation’s Congressional Families Cancer Prevention Program, was joined by congressional spouses Colleen Ochoa Peters (spouse of Sen. Gary Peters) and Cindy Bergman (spouse of Rep. Jack Bergman).

ALEJANDRO ESCOVEDO TOUR: In January, the Foundation hopped on tour with Alejandro Escovedo, a musician, hepatitis C survivor and spokesperson for Think About the Link®.

Alejandro shared his story about getting tested and treated for hepatitis C to prevent liver cancer.

FOUNDATION NEWS

TOP: Participants and Foundation staff celebrate the end of Awesome Games Done Quick 2019.

BOTTOM: Foundation staff chat with AGDQ organizers on the livestream about the Foundation’s mission and impact.

GAMERS LEVEL UP FOR CANCER PREVENTION From January 6-13, 2019, more than 2,000 people gathered in Rockville, Maryland—with hundreds of thousands joining online—to participate in an epic 160-hour gaming marathon. The event, Awesome Games Done Quick (AGDQ), raises funds in support of the Prevent Cancer Foundation®. Spectators from around the world watched as 150 speedrunners (players) showed their skills, navigated through virtual worlds and beat level after level at record speeds.

Viewers watched intently in person or via livestream on Twitch, donating throughout the week to support the Foundation. The donations came in exciting waves—people gave when a popular speedrunner was up, when their favorite game was played or in support of player challenges.

But it wasn’t just the love of gaming that brought in donations—participants connected deeply and personally with the Foundation’s mission.

“Longtime watcher, first time donor,” said viewer “Rudepaul,” who donated during the game Aria of Sorrow (All Bosses). “My mom started chemo recently and this event has taken on a new meaning for me...let’s beat some bosses, beat some records and beat cancer!”

In the late hours of the final marathon day, Twitch users started a motion for a donation train, calling everyone to donate $5 at once. Their momentum paid off and donations flooded in, pushing the fundraising total from $1.86 million past the $2 million mark in a matter of minutes, and causing a roaring cheer from the crowd.

AGDQ ultimately raised a whopping $2.4 million for the Foundation, the most in its nine-year history. To date, AGDQ has raised more than $11.3 million to help fund research, technology and community grants in the U.S. and internationally, as well as cancer prevention and early detection education and outreach.

Want to host your own fundraising event? Visit youcanpreventcancer.org to get started. preventcancer.org 3

ADVOCATE AT ANY AGE: MOLLY’S STORY By age 7, Molly Murdock knew she wanted to make a difference in her community. When she was assigned a school project on global citizenship, she chose to focus on sun protection. Her mother, grandfather and uncle all had melanoma, and her brother suffered a bad sunburn at school, so it was an important issue to her.

Living in Maryland, she knew about HB 427, a law recently passed that allows students to use sunscreen in school without a doctor’s note.

What she didn’t know was how far this project would take her.

She named her project K.I.S.S.P. (Kids in School Need Sun Protection) and spent her summer learning more about skin cancer. In July 2018, she delivered a speech to her school board to make them aware of the law and the requirement for an official sunscreen use policy. Thanks to her advocacy, her county was the first in the state to create a policy.

But Molly wanted more—she wanted all kids to have lifesaving sun protection. She started fundraising and raised more than $1,200 to buy sunscreen, hats and sunglasses for children in need.

TOP: Aliah Williamson of WDMV interviews Molly Murcock about her project.

BOTTOM: Molly receives a challenge coin from Maryland Governor Larry Hogan.

“I plan on spreading awareness about skin cancer forever,” said Molly. “I would love to have my project message spread statewide and nationally and continue to push for legislation for all kids to be able to bring sunscreen to school…it’s so important that kids understand that what they do now will affect them later.”

Molly’s work led her to local TV appearances, a meeting with Maryland Governor Larry Hogan and the creation of her own nonprofit named after her project.

We can’t wait to see what she does next!

BE LIKE MOLLY: Does your county require a doctor’s note to use sunscreen in school? Have one ready so your child can stay safe in the sun—and talk with your local government officials about creating supportive policies for sun protection in schools.

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ADVOCACY NEWS

EVERY YEAR, THERE ARE AN ESTIMATED 400,000 NEW CASES OF SKIN CANCER IN THE U.S. CAUSED BY INDOOR TANNING.

IT’S TIME FOR GYMS TO PRACTICE WHAT THEY PREACH When you think about the gym, you typically think “healthy,” right?

Regular physical activity is an important way to lower your cancer risk, and gyms help millions of Americans stay active.

But there could also be danger lurking in your local gym or fitness center: tanning beds.

According to a recent study, almost half of fitness centers in the U.S. have tanning beds. And people who use tanning beds at their gyms tan more than other tanners—67 percent more.

While some people may see this as an added benefit of their membership, it is putting them at increased risk for skin cancer. Every year, there are an estimated 400,000 new cases of skin cancer in the U.S. caused by indoor tanning.

Tanning beds work by emitting harmful ultraviolet (UV) rays to help skin “tan.” They’re now considered a Group 1 carcinogen by the World Health Organization, like tobacco, asbestos and radon—all dangerous, cancer-causing substances.

Send a letter, email or tweet to your local gym and urge them to put their members first and remove their tanning beds.

It’s time for fitness centers to practice what they preach and protect their members’ health by removing tanning beds. preventcancer.org 5

ONE LIFE TO LIVE

By Kara Million It was that time of year again …the annual wellwoman check-up. Some women dread it so much they skip their exams. But not me…I went every year.

One year, the nurse asked if I wanted to be screened for human papillomavirus (HPV). I had never heard of HPV, but she explained it’s a sexually-transmitted virus that most people come in contact with at some point. The test is similar to the Pap test and would detect if I had been exposed to any HPV strains known to cause cancer.

My response was, “Sure—let’s get everything checked out while I’m here.” I wasn’t worried about the outcome. I had been married for a couple of years and didn’t show any symptoms of an STI. A week or so later, I got a call from the nurse with my results. The Pap test had come back fine, but the HPV screening was positive for a strain of HPV that could cause cancer. The nurse assured me I didn’t have cancer, and the only thing to do at this time was to come in more frequently for my Pap test. So I went, every six months.

After that, everything remained status quo. I had my son in 2006 and my daughter in 2008. Being a busy mom of two kiddos in diapers, I let my exam slip. I finally scheduled my appointment 15 months after my daughter was born—and that visit changed everything.

When the doctor called and asked that I come in later that day, I knew something was wrong.

Sitting in the exam room, holding my husband’s hand, she came in and said, “The test results came back and you have cancer. I’m so sorry.”

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Time stopped. I cried—sobbed to be exact—into my husband’s arms. That moment still brings tears to my eyes even now, 10 years later.

After more biopsies and imaging, I was diagnosed with stage IIIA cervical cancer. A hysterectomy was not going to cure me—the cancer had traveled into my vaginal canal.

My treatment was six weeks of daily radiation and weekly chemotherapy, followed by two treatments of brachytherapy (internal radiation). I was still hopeful and ready to start. I wanted this cancer out of me.

My treatment started easy at first. I would do my radiation treatments during my lunch break. It wasn’t too bad—I had little nausea and I didn’t lose my hair.

By week three, the radiation was starting to burn my skin. By week four, I had to start my leave of absence from work as I was now in pain and the radiation was wreaking havoc on my bowels.

I also had my two brachytherapy treatments,

PREVENTIVE MEASURES AND GENERAL WELLNESS

Still hopeful, my husband and I went to the appointment, where for the second time, we heard the words we had been dreading: “The cancer is back.”

which consisted of being confined to a bed for three days while being radiated internally for 15 minutes every hour. The only thing that kept me sane was the pain medication that helped me sleep through it. Being radiated in the genital area was extremely painful…the most pain I have ever experienced.

The weeks passed and I started to heal, both physically and psychologically. I resumed my life with my family and went back to work. It was only a short year later when at one of my check-ups, my doctor saw something during the exam and took a biopsy. My heart broke.

I called my husband and we went home and did the exact thing you’re NOT supposed to do— search the Internet for answers. We didn’t find any encouraging information about surviving recurring cervical cancer. What we did find was high mortality rates and a procedure that sounded very barbaric: a total pelvic exenteration (TPE).

It consisted of not only a radical hysterectomy, but also the removal of the bladder, rectum, anus, vaginal canal—basically anything that touched the female reproductive system. This procedure also left the patient with colostomy and urostomy bags for the remainder of her life. No way in this day and age was this the treatment plan.

MOVING THE NEEDLE ON CERVICAL CANCER CO-TESTING Research shows that routine cervical cancer testing with both a Pap test and HPV test (co-testing) finds more cases than either test alone and detects cancer earlier, when successful treatment is more likely.

But despite the clear benefits of co-testing, the United States Preventive Services Task Force (USPSTF) failed to include it in their draft cervical cancer screening recommendations in 2017.

So we fought back.

The Foundation worked tirelessly to shine a national spotlight on the issue. From an op-ed in U.S. News and World Report to a briefing on Capitol Hill with Think About the Link®, we attacked from every angle. And it worked!

Our efforts started a movement in Congress, with members from both sides of the aisle taking action. Ultimately, Reps.

David Young (R-Iowa) and Rosa DeLauro (D-Conn.) were able to cement co-testing recommendations into an appropriations bill, securing them until 2022.

The USPSTF soon heard the call from the powerful voices of our advocates and in the summer of 2018 changed its recommendations to include co-testing—a move that will undoubtedly save many lives.

Still hopeful, my husband and I went to the appointment, where for the second time, we heard the words we had been dreading: “The cancer is back.”

Continued on next page preventcancer.org 7

Continued from previous page

I felt completely numb as the doctor explained my only option. I needed surgery to remove the growing cancer and to get a large enough margin so it would not come back—a surgery to remove my reproductive system, bladder, anus, rectum and vaginal canal. It also included removing a long strip of my abdominal wall to fill the void left in my pelvic region. She was telling me what I had feared most…the surgery I had read about, the surgery I feared I would not live through…a TPE. Surgery was scheduled just a few short weeks later. I went into “mom mode.” The thought of leaving my two children motherless brought me to tears. I couldn’t even say the word “surgery” without breaking down. I knew it had to be done—it wasn’t an option or a choice. If I wanted to live, to be there for my children, I had to have the surgery.

HPV is the leading cause of cervical cancer. It caused my cancer and it has forever changed my life.

The surgery took 13 hours and I was in the hospital for three weeks. But what a gift I had been given…LIFE. The recovery was hard at first, but I slowly started to get better. It took a year to get back to about 80 percent of what I had been before the surgery. I settled into my “new normal” way of life…my LIFE with my children, my husband, my family and friends.

They say you are a survivor the moment you are diagnosed. On June 25, 2019, I will be a 10-year survivor. I am thankful to be here today for my kids, my husband and my family and friends.

I am thankful to be here to speak to other TPE patients and help them through their cancer journeys. I am one of the lucky ones.

HPV is the leading cause of cervical cancer. It caused my cancer and it has forever changed my life. HPV can also cause several other cancers, such as vulvar, vaginal, penile, anal 8 Cancer PreventionWorks: April 2019

Kara with Rep. Rander Weber (TX-14) at a Prevent Cancer congressional briefing.

and oropharyngeal (back of throat) cancers. At some point, 80 percent of adults in the U.S. are affected by HPV. Pap tests to check for pre-cancerous cells in women continue to be one of the most important preventive exams available. Thankfully, the number of new cervical cancer cases is slowly starting to decrease thanks to the HPV vaccine. If only it had been available when I was a teenager.

If only it had been available to those men and women who have lost their battles due to HPVrelated cancers.

Fortunately, my children will not endure my same fate. They have been vaccinated against developing any HPV-related cancers. It is a gift that I can give them that will protect them for a lifetime.

Please remember to always schedule your wellness exam and don’t skip your appointments. There is always somewhere more comfortable to be than in your doctor’s stirrups— trust me, I know. But it is so very important, not only for your health, but possibly your life. And please don’t forget about your children—have them vaccinated against HPV-related cancers.

Prevent cancer. You only have one life to live.

IN THE WORLD OF CANCER

NEW 23ANDME TEST: Unintended consequences for cancer prevention Imagine spitting into a tube, sending it off to a lab and within weeks knowing whether or not you would ever develop colorectal cancer.

Sound too good to be true? That’s because it is.

The FDA recently approved a new direct-to-consumer genetic test for colorectal cancer by the company 23andMe Inc. The test looks for two genetic changes in your DNA that indicate the hereditary condition MUTYH-associated polyposis, which is associated with a higher risk of colorectal cancer.

Although the test may help some people identify their risk for this condition, a negative result from the test does not rule out the possibility of developing colorectal cancer.

The test exclusively monitors for MUTYH-associated polyposis, and does not test for any other genetic variants or syndromes that increase the risk of cancer, such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colorectal cancer, also known as Lynch Syndrome.

So, while your spit may tell you if your genes indicate ONE rare condition that increases colorectal cancer risk, it cannot predict your overall risk of cancer. Genetic testing, regardless of result, should never take the place of colorectal cancer screenings, which should begin at age 45 for those at average risk. Talk to your health care professional about which option for colorectal cancer screening is right for you.

Only 5-10 percent of all cancer cases are caused by inherited genetic mutations. If you’re considering genetic testing, meet with a genetic counselor who can discuss the full picture of your health and risk factors (including family history), and your options after taking the test. You should check with your insurance company before meeting with a genetic counselor to see if the counseling session and genetic testing are covered by your insurance.

MARCH 2019 MARKS THE 20TH ANNIVERSARY OF COLORECTAL CANCER AWARENESS MONTH In 1999, the Prevent Cancer Foundation® led the charge to designate March as National Colorectal Cancer Awareness Month. To achieve the designation, the Foundation worked closely with legislators, the American Digestive Health Foundation and the National Colorectal Cancer Roundtable. The designation became official on November 19, 1999, with a declaration by the U.S. Senate, followed shortly by a resolution of the House of Representatives and an official proclamation by the White House.

The Foundation raised awareness by creating popular “buddy bracelets” featuring the tagline, Preventable. Treatable.

Beatable®. Colorectal cancer continues to be one of the Foundation’s focus areas and every year we visit communities nationwide with our Prevent Cancer Super Colon®. preventcancer.org 9

HEALTHY EATING AND FITNESS

HEALTHIER TOGETHER: How to create a wellness group If you’re looking for extra motivation to kick-start a healthier lifestyle, try creating a wellness group to challenge others. After all, a little competition is healthy.

Here’s how it works: 1. Recruit wellness challengers. Reach out to friends, family or co-workers to find others interested in joining you.

2. Set your goals. Do you want to focus on exercise, healthy eating, mental health or all three? Select realistic challenges, such as exercising three times a week or drinking water instead of soda.

3. Track your progress. Use a calendar or journal to record each day you complete a challenge.

RECIPE: SMOOTHIE BOWL Smoothie bowls are a quick and healthy breakfast option. It’s so easy to pack in tons of nutrients and they feel more filling than drinking a smoothie—plus you get to add toppings.

Serves 2.

INGREDIENTS: • 1 ½ cup frozen mixed berries • 2 bananas, frozen • A handful of baby spinach • 1 tablespoon peanut butter

4. Stay motivated. Share tips, successes and setbacks with each other through a group text, Facebook group or Slack channel.

• 3 tablespoons unsweetened almond milk

5. Make it social. Meet up for a healthy meal, workout class or walk. By completing challenges together, you hold one another accountable.

• Agave or honey (to taste, optional)

6. Reinforce good behavior. Offer a prize for the person who completes the most challenges at the end of the month. For friends, it might be a small money pool everyone contributes to. For family, it might be skipping out on a household chore.

7. Reflect. At the end of the month, think about how your body feels and how you can continue healthy habits. Don’t get discouraged if you don’t reach your goals right away—just take it one step at a time!

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• 1/3 cup Greek yogurt Toppings (optional): Fresh fruit, nuts, granola, chia seeds, coconut flakes, a drizzle of honey or agave DIRECTIONS: If your bananas aren’t already halved or sliced, defrost them just enough to peel and halve. Add ingredients to a blender in the order listed and puree until smooth. Taste and add additional milk, peanut butter or sweetener if needed. Pour into a bowl and finish with your desired toppings.

IN THE WORLD OF CANCER

YOU CAN HELP US COMPLETE THE PICTURE Since 2007, donors like you have helped fund the Prevent Cancer Foundation’s community grants program. With your support, we have awarded critical funding to more than 80 organizations across the U.S., providing education, screenings and vaccinations to community members in need. However, each year we receive many more highly-qualified applications than we are able to fund—projects with the potential to save lives.

Seventeen states have yet to receive a community grant from the Prevent Cancer Foundation® (shown above). Our goal is to be able to support organizations in every U.S. state and territory, but we can’t do it without you. Your donations bring us one step closer to reaching every state— maybe even yours.

Take a look at some of the amazing projects you helped fund in 2018: • The Hepatitis B Foundation aims to reduce rates of liver cancer in African immigrant and refugee communities in Philadelphia by offering free hepatitis B and C screenings and follow-up support services.

• University of Southern California – Keck School of Medicine’s project aims to provide smoking cessation and lung cancer education and screening services to the surrounding Korean-American community.

Dr. Christopher Lee of the USC Keck School of Medicine greets a community member.

• The OhioHealth Foundation’s critical work will provide HPV vaccinations to high-risk women under age 26 in central Ohio, including victims of sex trafficking.

Help us reach all U.S. states and territories this year! Visit www.preventcancer.org/donate.

YOUR FUTURE & PHILANTHROPY Even if you live to be 150, you need an estate plan. Join nearly 200 individuals and couples who have included Prevent Cancer Foundation® in their plans.

By joining the Edward Perry Richardson Legacy Society, you become part of a special group that has pledged to include the Foundation in their wills, charitable trusts, retirement accounts or life insurance policies. Or talk to us about establishing a charitable gift annuity—earning income for life.

Celebrate life and plan ahead. Plan ahead for you. Plan ahead for the unexpected. Plan ahead for loved ones. Plan ahead to Stop Cancer Before It Starts!® Contact Jody Hoyos at jody.hoyos@preventcancer.org or 703-837-3684 for more information. preventcancer.org 11

Find this issue and more at preventcancer.org/newsletter

TO SUBSCRIBE, CONTACT: Prevent Cancer Foundation® 1600 Duke Street, Suite 500, Alexandria, VA 22314 Toll-Free: (800) 227-2732 Main: (703) 836-4412 Email: pcf@preventcancer.org Visit: preventcancer.org Cancer PreventionWorks is published by the Prevent Cancer Foundation®, a 501(c)3 nonprofit organization dedicated to the prevention and early detection of cancer.

All contributions are tax deductible to the fullest extent allowed by law. The Prevent Cancer Foundation® is a member of the Combined Federal Campaign (#11074).

1600 Duke Street, Suite 500 Alexandria, VA 22314

UPCOMING EVENTS AND NEWS April 24-26: Dialogue for Action® on Cancer Screening and Prevention April 24: Prevent Cancer Advocacy Workshop

IN THIS ISSUE

Gamers level up for cancer prevention

Healthier together: Create a wellness group

One life to live

Advocate at any age: Molly’s story

April 25: Cancer Prevention Laurels Awards Luncheon May 9: Prevent Cancer Foundation® Annual Spring Gala. More information at: preventcancer.org/gala