Cancer Prevention Works spring 2024

DARE TO IMAGINE A WORLD WHERE CANCER IS PREVENTABLE, DETECTABLE AND BEATABLE FOR ALL SPRING 2024

New results from Early Detection Survey released for

Cancer Prevention and Early Detection Month

Page 2 CEO’s Corner, Awesome Games Done Quick

Page 3 5 years after testicular cancer diagnosis, AGDQ’s Keizaron is cancer-free

Page 4 Cancer prevention in Kenya

Page 5 2024 Global grantees

Page 6 2024 Early Detection Survey Results

Page 8 I never knew my mom had cancer: Caitlin’s story

Page 9 Colorectal cancer screening options: what’s right for me?

Page 10 Prevent Cancer Foundation’s 2024 Advocacy Workshop, 2024 Prevent Cancer Dialogue

Page 11 How will you take back the day?

CEO’S CORNER DEAR READERS,

It’s unusual to encounter someone who hasn’t been impacted by cancer in some way. Prevention and early detection are important so that our loved ones can stay ahead of cancer. Over 2 million Americans are diagnosed with cancer each year, and at the Prevent Cancer Foundation, we remain committed to creating a world where cancer is preventable, detectable and beatable for all. That’s why we are pleased to recognize this April as the first official National Cancer Prevention and Early Detection Month.

As we raise awareness about the importance of cancer prevention and early detection throughout the month, I hope you feel empowered to take proactive measures for your health. You can start with this issue of Cancer Prevention Works, where you’ll learn about the latest findings of the 2024 Early Detection Survey, what patient navigation is and how it plays a role in reducing cancer disparities, and more.

Your support makes it possible to spread our message and give people the tools they need to check their health. Together, let’s continue to make significant progress to prevent, detect and beat cancer.

JODY HOYOS CEO

GAMES DONE QUICK RAISES OVER $2.5 MILLION FOR THE PREVENT CANCER FOUNDATION AT ANNUAL GAMING MARATHON

Awesome Games Done Quick (AGDQ) raised more than $2.5 million for the Prevent Cancer Foundation this January.

All-star gamers from around the world gathered both virtually and in Pittsburgh, Pa. to speedrun—play as fast as possible—their favorite games in support of the Foundation. The gaming community showed their support for cancer prevention and early detection by tuning in for a combined 10,499,485 hours and making over 36,000 separate donations throughout the week.

In a partnership lasting over a decade, Games Done Quick has helped fund many of the Foundation’s research efforts, including four global grant projects currently underway. Because of the AGDQ community, the Prevent Cancer Foundation and our partners can make invaluable strides in cancer prevention and early detection around the world.

Games Done Quick photo by Wes “Fish” Chan.

AWESOME GAMES DONE QUICK’S KEIZARON IS FINALLY CANCER-FREE

Five years after a testicular cancer diagnosis left him scrambling for answers, Steven Eisner is officially cancer-free.

“It’s like I had a giant gorilla on me, and now the gorilla is just gone,” Eisner said.

Eisner, known within the gaming community as Keizaron, is a speedrunner and a frequent participant at Awesome Games Done Quick (AGDQ). Keizaron spoke to the Prevent Cancer Foundation in 2018 about his diagnosis, saying that he noticed an unusual firmness in his right testicle during a self-check. He said that having access to resources from the Foundation had prepared him with what to look for and what to do when he noticed a change.

“I’m confident that in five years I will officially declare myself cancer- free,” he told the Foundation at the time.

And five years later, at AGDQ 2024, Keizaron announced that very news during an interview with Heather Mackey, the Prevent Cancer Foundation’s Senior Director of Cancer Prevention and Early Detection. His announcement was met with cheers from the hundreds of people attending in person, and the tens of thousands more streaming the event online.

Although testicular cancer can occur at any age, it is most often seen in young people ages 20-39. Keizaron, who is now 33, recalled the psychological challenge of battling something so serious at a relatively young age.

“There’s so many people that were in the waiting room that were 60 [years old]...I felt so young compared to everyone else that was there,” he said.

“It was also just in general like kind of a wake-up call of, ‘Hey, this could happen to anyone. It doesn’t matter if you’re 10 years old or 100 years old.’”

Keizaron wants his good news to serve as an example of how routine cancer screenings and checks really can save lives. “[People] might just be terrified because hearing the news, ‘you have cancer’—those are three words you never want to hear in the same sentence.”

“A lot of people just don’t do what they need to do [to screen themselves against cancer] because they’re scared. My advice would be, don’t be scared…don’t worry about looking weak or anything like that. You’re stronger for knowing that you are a human who was vulnerable to a terrible disease and you’re taking the effort to make sure that you go through every step to prevent it. And if you do have it, [you’re taking] every step to get past it.”

Keizaron’s cancer journey has changed his outlook. “I’ve learned to live life a lot more than before,” he said. “Whether it’s something as innocuous as, ‘I’m going to go ahead and try this roller coaster I was terrified of,’ it kind of just makes me appreciate the fact that I’m still here.”

To learn more about testicular cancer, signs and symptoms, and information on screenings and self-checks, scan this QR code.

Photo by Kevin Kuzminski

CANCER PREVENTION IN KENYA

By Lisa McGovern, Executive Director, Congressional Families Cancer Prevention Program, Prevent Cancer Foundation

Cervical cancer is the leading cause of cancer deaths in Kenya, with more than 3,200 dying annually from the disease. Yet, many Kenyan women report they avoid screenings for fear of being told they will die. This avoidance leads to late diagnoses and poor outcomes.

In August, I traveled to Nairobi, Kenya’s capital, to meet the inspirational women of KILELE Health, the recipient of a global grant from the Prevent Cancer Foundation. KILELE is making cancer prevention tools accessible to the roughly 40,000 Kenyans living in Mbeere, a remote, resource-poor region of the country.

“Kilele” means “peak” in Swahili, and the staff of KILELE Health work to equip cancer survivors and caregivers with the knowledge and skills to literally climb mountains and transition to life beyond cancer. By summiting some of Africa’s most challenging mountains, including Mount Kenya, the women of KILELE aim to prove that cancer is not a death sentence. Their message is that when cancer is detected early, you can not only survive – you can thrive!

With the Foundation’s support, KILELE provides human papillomavirus (HPV) vaccinations and cervical cancer screenings and treatments to residents of Mbeere. These efforts also address myths and misconceptions hindering women’s access to lifesaving, preventive health care. HPV vaccines have been available in Kenya since 2019, but distribution has been disrupted by misinformation and vaccine hesitancy. As a member of the Prevent Cancer Foundation team, it was an honor and a pleasure to see firsthand how KILELE Health has been combatting these obstacles.

During my trip, I met with KILELE’s executive director, Benda Kithaka, a powerhouse health advocate with a welcoming smile and infectious energy. We were joined by Mary Nyangasi, Head of the National Cancer Control

Program who enthusiastically reported that she discovered Prevent Cancer Foundation’s screening quiz and shared it widely throughout Kenya. I also met cancer survivors Jane Kabaki, Kui Karur and Pamela Savai who affirmed that, “Cancer does not define me.”

Climbing mountains is not for the faint of heart and the survivors who participate in these ascents often have never done it before. Their courage is not just personally transformational; it helps to destigmatize cervical cancer and impacts countless lives. In the words of mountaineer Conrad Anker, “The summit is what drives us, but the climb itself is what matters.”

KILELE is playing a meaningful role in shaping the future of health care in Kenya. With increasing awareness campaigns, improved access to HPV vaccinations and enhanced screening programs, the nation is making significant progress toward combating this disease. By empowering women with knowledge about routine screenings and the benefits of early detection, KILELE and the Prevent Cancer Foundation are creating a path toward a future where cervical cancer becomes preventable, rather than a common tragedy.

2024 Global Grantees

THIS YEAR, THE FOUNDATION HAS AWARDED FOUR GRANTS IN SUPPORT OF INTERNATIONAL CANCER PREVENTION AND EARLY DETECTION PROJECTS. EACH PROJECT RECEIVED A ONE-YEAR, $95,000 GRANT:

Basic Health International - Mexico

This project will develop and implement a training curriculum for low-cost, self-collected human papillomavirus (HPV) sampling and will provide treatment for those at high risk in an under-screened population.

Cameroon Baptist Convention Health Services - Cameroon

This project will address cervical cancer in three urban, medically underserved neighborhoods by screening women for cervical cancer and vaccinating their children against HPV.

Memorial Sloan Kettering Cancer Center - Nigeria

This project will train Nigerian radiologists to use a tablet-based, mobile breast ultrasound with AI support for timely diagnosis of breast cancer, to bridge the gap of limited diagnostic imaging.

The University of Texas MD Anderson Cancer Center - Zambia

This project aims to improve breast cancer detection and survival rates in Zambia by using an international collaborative training model to train the country’s first specialized breast radiologists.

Demonstrating thermal ablation in Cameroon.

2024 EARLY DETECTION SURVEY RESULTS REVEAL

NEARLY SEVEN IN 10 U.S. ADULTS ARE BEHIND ON AT LEAST ONE ROUTINE CANCER SCREENING

Are you up to date on your routine cancer screenings? According to the Prevent Cancer Foundation’s 2024 Early Detection Survey, the answer is: probably not. The survey revealed that nearly seven in 10 U.S. adults are behind on at least one routine cancer screening.1

The second annual survey, released during Cancer Prevention and Early Detection Month in April, indicates more U.S. adults are behind on routine cancer screenings compared to last year. Survey participants cited their top reasons for not being up to date, including not knowing they need to be screened (43%), not having a family history of the disease (38%) and not having any symptoms (33%).

All these reasons reflect a need for greater education and awareness around routine cancer screenings, which should be given to people of average risk, regardless of whether they are experiencing any signs or symptoms. Family history, in particular, seems to be a great source of confusion around screening—though the vast majority of cancers are diagnosed in people with no family history of disease, many people indicated they were under the incorrect assumption that no family history of cancer means you don’t need to be screened.

One of the top reasons for being behind on screenings— simply that people didn’t know they needed to be screened—was the same across nearly all survey participants, regardless of age, sex or race/ethnicity. Other common reasons varied among different racial and ethnic groups in the U.S.:

• Hispanic and Latino adults most often indicated an inability to afford the cost (34%) or fear of a cancer diagnosis (29%) as top reasons for not being up to date on screenings.

• Black or African American adults most often indicated skepticism of the health care system (15%) or not having child care (10%) as top reasons for not being up to date on screenings.

• Asian adults most often indicated nervousness about the screening examination (30%) or worry over contracting a contagious illness (18%) as top reasons for not being up to date on screenings.

• White adults most often indicated not having any symptoms as a top reason for not being up to date on screenings (36%).

These reasons paint a more detailed picture of how different barriers can affect whether someone receives care—and the consequences are alarming. These barriers can directly put people’s health in jeopardy. Across all populations, these barriers make it more difficult to achieve better health outcomes. When cancer is detected early, it can lead to less extensive treatment, more treatment options and better chances of survival.

Despite these differences, there is a consensus among U.S. adults about what will make them more likely to schedule their routine doctor’s appointment or cancer screening:

• More than half (53%) of participants reported that text, phone call or email reminders would make them more likely to schedule their appointments.

• Thirty-eight percent (38%) of participants said the ability to schedule online or through an app would make them more likely to schedule. This answer was most popular among Gen Z adults and Millennials, with nearly half (47%) saying they would be more likely to schedule their appointments with this as an option.2

Early Detection = Better Outcomes. It is crucial to advocate for your health and talk to your health care provider about the routine cancer screenings you need. The Prevent Cancer Foundation is here to help you have these conversations. You can utilize a number of free resources, such as simple screening checklists for the screenings you need at every age, information on free and low-cost cancer screenings and a tool to create your own personalized screening plan.

As you celebrate the first-ever Cancer Prevention and Early Detection Month this April, remember this: You don’t need to wait for symptoms to check your health through cancer screening tests. Early detection of cancer can mean more treatment options, more healthy days ahead, and more time with the people you love.

For more information on the routine cancer screenings you need at every age, visit preventcancer.org/betteroutcomes or scan the QR code.

1 The cancer screenings studied in this survey were for breast cancer, cervical cancer, colorectal cancer, oral cancer, lung cancer, prostate cancer, skin cancer and testicular cancer.

2 In this survey, Gen Z is defined as adults ages 21-27 and Millennials are defined as adults ages 28-43.

I NEVER KNEW MY MOM HAD CANCER: Caitlin’s story

By Caitlin Kubler, Senior Director of Advocacy, Prevent Cancer Foundation

I’ve always been searching for knowledge. From a young age, I was curious about space, animals, art, science—and especially the medical field. I pursued my passion in the medical field and became an EMT out of high school, volunteering with the local fire department and getting my degree in health sciences management at George Mason University, not knowing my world was about to completely change.

My sisters and I were home from college and sitting around the dinner table enjoying a delicious meal my mom had spent all day preparing, when out it came, like she just asked one of us to pass the mashed potatoes. “Back when I had cancer…” We all looked at each other in total shock.

“I’m sorry, what?” I interrupted her. “Wait, you had cancer?! When?”

I recall each of us asking my mother a series of prodding questions and she remained calm through each response. It appeared this was the first time any of us, apart from my father, knew my mom had been diagnosed with colorectal cancer and later, successfully treated.

It was her gynecologist who recommended a stool-based colorectal cancer screening test. She was not yet 50, the recommended screening age at the time (now it’s 45 for those at average risk), but her doctor thought something did not seem right and insisted she try the test and see a gastroenterologist. Her test came back positive and per guideline recommendations, she underwent a follow-up colonoscopy and other diagnostics. Doctors confirmed that cancer had perforated the wall of her colon and had spread to her lymph nodes.

My mother ended up having the entire right side of her colon removed, along with her appendix and 13 lymph nodes. She spent 11 months receiving chemotherapy and other treatment, all while working full-time. Any signs or symptoms from her cancer disappeared after five years. Today, she is 74 years old and happily enjoying her retirement.

It’s painful to think back on the fact my mother went through her cancer journey mostly alone and that she’d decided to omit such a significant life event from her daughters. But I take with me today the fact that she is miraculously here to tell her story and teach us that knowledge is power—actually, knowledge is empowerment. As a result of my mom sharing her diagnosis with us, my sisters and I are empowered to take charge of our health and have each started routine colorectal cancer screenings (earlier than most due to our elevated risk from family history). I’m happy to say for us it’s so far, so good.

Caitlin Kubler and her mom, Virginia, in 2021.

I now spend my professional career advocating for policies that support cancer prevention and early detection. I know that Early Detection = Better Outcomes, and I work to provide education so we all can be our own best advocates for our health.

It can be hard to talk about these things—even with the ones you love—but knowing your family history and checking your health is worth it. While most people who get cancer do not have a family history of the disease (which is one reason routine screening for everyone is so important), a personal or family history of cancer or certain other diseases may increase your risk. Next time you gather with your family, don’t be afraid to have these conversations and leave the discussion empowered to take care of your health.

Colorectal cancer screening

options: What’s right for me?

There are many colorectal cancer screening options. Talk with your health care provider about which screening is right for you. The best screening is the one that gets done, so despite potential discomfort, put it on the calendar.

Colonoscopy: Every 10 years

In this procedure, a tube with a light and a camera gets inserted through the rectum into the colon to look for irregularities. Not only does this procedure screen for cancer, but during a colonoscopy, your doctor can also remove pre-cancerous polyps (growths), making it preventive against cancer, too. Before a colonoscopy, the person getting screened needs to prepare by fasting for some time and drinking bowel preparation fluids or taking oral medication to clean out the colon. Sedation is generally required for a colonoscopy.

VISUAL TESTS

Note: If you take any of the other tests and get abnormal results, you must get a colonoscopy, too.

Virtual colonoscopy: Every five years

Less invasive than a traditional colonoscopy, the virtual colonoscopy is a procedure that uses a CT-scan and X-rays to examine the colon for abnormalities. It does require similar bowel prep to the colonoscopy, but no tubes are used and sedation is not required.

Flexible sigmoidoscopy: Every five years

Compared to a colonoscopy, this procedure examines only the lower part of the colon. The procedure involves a tube with a camera so the doctor can view the inside of the colon. Cleaning of the bowel with prep ahead of time is required. A flexible sigmoidoscopy can be done with or without sedation.

Use this QR code to download your own family history chart you can fill out to ensure you and your health care provider have the valuable information to help determine which cancer screenings you need, when to begin screening and how often you should be screened.

STOOL-BASED TESTS

Guaiac based fecal occult blood test (gFOBT) or Fecal immunochemical test (FIT): Every year

These stool-based tests are sent to a lab to detect if there is blood in the stool. After getting a kit from a health care provider, you can take the test at home and mail-in your results.

Multitarget stool DNA test (mt-sDNA): Every three years

This stool-based test detects whether blood or DNA mutations are present. You take the test at home and mail in your results to the lab.

Think you’re Too Young for This Sh*t? Think again. Colorectal cancer is on the rise in younger adults. If you’re 45 years of age or older and of average risk, talk to your health care provider about getting screened.

PREVENT CANCER FOUNDATION’S 2024

ADVOCACY WORKSHOP: BRIDGING GAPS IN PATIENT NAVIGATION AND CANCER SCREENING

To get a cancer screening, logistics like child care, transportation, cost and taking time off work can be the difference between getting necessary health care and putting it off. Patient navigation is proven to be effective in overcoming barriers and improving cancer screening rates. Think of patient navigation as a “personalized GPS,” a navigation system to help you and your loved ones better understand the health care system and its many pathways to Better Outcomes.

To address this topic, the Prevent Cancer Foundation’s annual Advocacy Workshop returned virtually on Wednesday, March 6, where experts spoke on the state of patient navigation in cancer care. Speakers discussed screening and prevention in patient navigation programs and policy (including the 2024 Medicare Physician Fee Schedule codes) and their roles in reducing cancer care disparities.

The Workshop featured thought leaders in patient navigation, including:

• Electra D. Paskett, Ph.D., Marion N. Rowley Professor of Cancer Research at The Ohio State University

• Elizabeth Franklin, Ph.D., MSW, Head, US Public Affairs and Patient Advocacy, Oncology, Sanofi

• Gladys Arias, MPA, Principal, Health Equity Policy Analysis and Legislative Support, American Cancer Society Cancer Action Network

• Anabella Aspiras, Assistant Director, White House Cancer Moonshot Engagement

Scan the QR code to view the Workshop and presentation slides.

VIRTUAL SERIES

INTERESTED IN LEARNING MORE ABOUT PATIENT NAVIGATION?

In this session, speakers will share best practices in which successful patient navigation implementation can help reduce disparities and improve cancer screening. Moderated discussion and Q&A will immediately follow these presentations. SCAN

HOW WILL YOU TAKE BACK THE DAY?

If you are ready to host your own fundraiser, you can get started in just two easy steps:

• Scan the QR code below or go to givebutter.com/ preventcancerfoundation to create your personal fundraising page.

• Share that page with family and friends!

“June 19th is my least favorite day of the year. [In] previous years, I would spiral into being an anxious and depressed mess, stuck in a loop reliving the day my mom died. Now I’m doing something positive with my grief…I’ve put together a charity compilation on my label of cover songs that benefit the Prevent Cancer Foundation, Songs for Moms vol. 1.”

Chris’ story is one we hear all too often. For those impacted by cancer, whether it is your own diagnosis or that of a loved one, the date of diagnosis or loss can feel hard to face. Taking back your day with a new positive memory can be a great way to channel those difficult feelings and associations.

Putting together a fundraiser to benefit the Prevent Cancer Foundation is a meaningful way to commemorate that date and turn one of your hardest days into a way to help others so they never have to go through what you did.

Fundraisers like Chris’ charity compilation are critical to helping the Foundation continue its work to imagine a world where cancer is preventable, detectable and beatable for all. Thank you for “taking back the day” with the Prevent Cancer Foundation.

Chris with his mom.

Main: (703) 836-4412

Email: pcf@preventcancer.org Visit: preventcancer.org