Danielle Burgess Cancer Story | YMyHealth

For Danielle Ripley-Burgess, like so many young people, it was the “elephant in the room,” or more like the “elephant in the bathroom” that kept her symptoms hidden for years.

The embarrassing and uncomfortable idea, that is, of talking to someone about the bleeding she was seeing in her stool. So embarrassing in fact, that she was mortified when her mother put toilet paper in their shopping cart in public, as she worried she would run into one of her sixth grade classmates.

Ripley-Burgess always says that her story “starts in the toilet paper aisle,” because not long after that is when she began seeing symptoms, ones that she waited years to even share with her mom.

After experiencing off-and-on bleeding that progressed to an every-time in the bathroom experience with progressively larger amounts, she got checked out by a doctor and was quickly sent for a colonoscopy. The results: Stage III Colorectal Cancer. She was only 17 years old.

From never having heard the words “colon” or “rectum, or knowing that you could get cancer in that area to being a three-time colorectal cancer survivor and becoming the Vice President of Disease Awareness and Education of the patient advocacy organization, Fight CRC, Ripley-Burgess shares her personal story and the ongoing story of Young-Onset Colorectal Cancer. She sheds light on education initiatives, what it will take to lower the screening age below 45, and how advocacy makes a difference.

Personal Story

Health and priorities growing up

As a child of the ‘90s, Ripley-Burgess was a part of a typical suburban American family when it came to her health and eating. It was during that decade, as many of us will remember, that Sam’s Club and its many snacks came on the scene. Her and her family would eat things like pop tarts and frozen dinners.

While she does not remember her family talking about health much or learning about her family’s medical history, she does remember them regularly taking walks around the neighborhood and going to a primary doctor almost yearly. Her checkups were mainly for sports physicals, as she played sports.

Ripley-Burgess during treatment after her first colorectal cancer diagnosis at age 17. Her then high school boyfriend (who later became her husband) at her side.

Symptoms leading up to diagnosis

Being active and young, she easily rationalized the blood in her stool and bleeding she was seeing intermittently. At the time, she was at the end of eighth grade and thought it was the start of her period. Then, she thought the bleeding was coming from eating red-colored foods. So, she stopped eating things like Twizzlers, strawberry popsicles. None of that worked.

When she asked her mom to do a search online, it seemed like the cause must be hemorrhoids. Afterall, Ripley-Burgess was a young, healthy, volleyball player.

But by junior year of high school all of that changed. There was more blood every time she had a bowel movement, and it went from being some small spots of bright red to darker red, sometimes even black. There was so much blood sometimes that it would change the entire toilet bowl to red. She could not hide these symptoms anymore and thankfully when she did see the doctor, she was fast-tracked to get a colonoscopy, in which her tumor was found.

Other than the main symptom of rectal bleeding and blood in her stool, she remembers fatigue and some episodes of sharp stomach pain, but it was hard to put all of these pieces together.

Experience finding resources for younger patients

Back then, Ripley-Burgess like many other young patients who were also diagnosed in the early 2000s were told by doctors they she was one of the only ones in the US with colorectal cancer at a young age.

“When the nationally recognized cancer center is saying to you, ‘you are one of the only ones out there with colorectal cancer this young’ you really believe you're the only one,” Ripley-Burgess said. A lot of us have found each other along the way with the growth of social media.”

When she was diagnosed, the internet was just in its infancy, so the burden of finding information fell on her parents.

“If you look at the beginning of the curve showing early-age onset cases on the rise, that’s when I was diagnosed. Now we're 20 years into this but back at the beginning for young people with colorectal cancer, you didn't know anything and you thought you were the only one,” Ripley-Burgess said.

Treatment options and choice

Since she already had late-stage disease at 17 when she was diagnosed, her doctors hit her cancer with a very aggressive treatment approach. They actually gave her a treatment her for Stage IV patients. She had several surgeries, a three-drug cocktail of chemo, and radiation.

“It was six months of hell,” Ripley-Burgess said. “But it was effective.”

Physical and emotional challenges of treatment

Ripley-Burgess was on therapy that made her pretty sick. “The doctors had told my parents that they were going to give me a pretty big dose and see how much I could take. They weren’t kidding,” she said.

She experienced lots of nausea and mouth sores, so she could not eat a whole lot and lost a lot of weight. From radiation the side effects were hard, as it burned her skin. Her whole pelvis did not feel quite right, and towards the end of the radiation treatments her skin felt like it was on fire.

Fortunately, she did not fully lose all of her hair.

Ripley-Burgess and her boyfriend (now husband) at their junior prom.

Social life impacts of young diagnosis

How cancer impacts a young person’s social life, Ripley-Burgess astutely points out, depends on when your diagnosis occurs in relation to where your life is at.

She was in her junior year of high school—when lots of things were happening. Her friends were in school, taking the ACTs, applying for college, and in serious relationships, while she was home, homebound, and in cancer centers.

“In the midst of it all, I had to exit that whole social world to go fight. How it changed things for me socially was really one of the most painful pieces of being diagnosed in high school, but it also showed me like what true genuine relationships look like, for example, my current marriage,” Ripley-Burgess said.

Her then boyfriend has been her husband for more than 20 years now, and she is still friends with some of her friends from high school today.

“You choose how you get to see things. There are some definite downers, but then I’m choosing to see that it actually showed me relationships worth pursuing,” she reflected.

Maintaining positive self-image

Kind gestures from her friends really made a difference in helping Ripley-Burgess stay positive and not go to those low places. One thing that still really sticks with her is how her boyfriend who was at school a few hours away would come home every weekend to see her. By having that to look forward to, even on the days when she was so sick from treatment, she would want to get better for him.

Her friends would invite her to hangout as well. So, having normalcy in between treatments from socializing to thinking about college, dress shopping and looking at hairstyles that fit her short hair ahead of upcoming dances, all helped her maintain a positive self-image.

Young-Onset CRC

Misconceptions about CRC and young onset CRC

After the past two decades having been both a CRC patient and advocate, Ripley-Burgess has found these two misconceptions about CRC:

People who are sick and are living with CRC must look sick.

“In some people’s minds our culture has this image of a person who is sick with cancer as being someone who is in bed at home dying. It's just really this misperception that if you have cancer and you're actively fighting cancer, like you're going to disappear from the face of the earth,” she said.

“There's a lot of people out there who are still engaged, involved, and contributing while they are on treatment. And they could be really sick on the inside, but they look great on the outside, and they're still showing up for their life.”

She thinks that surprises people sometimes, and they don’t know what to do with it or how to engage with that person.

People’s lives stop with a cancer diagnosis.

“Their lives will change and be altered, but their lives don’t just stop,” she said.

Ripley-Burgess with her doctor before a procedure. They are holding up the book she wrote and published in 2020, Blush: How I Barely Survived 17. It is her coming-of age-memoir and is truly an inspiring and life-changing read.

Key things the public should know about young onset CRC

Three key things you should know about and act on Ripley-Burgess says are:

Knowing your family history and what your risk is – People need to know their family medical history and understand from their doctor if they are at an increased risk for colorectal cancer and what this means for screenings. Also, do not rule out genetic testing if several people in your biological family have a history of cancer.
Becoming body-positive and aware - It’s important for people to become aware of what’s normal for their body, and to feel comfortable in talking about their bowel habits, if symptoms arise.
Educating yourself about colorectal cancer symptoms- Having knowledge of all the different colorectal cancer symptoms that you can get will give you the power to get screened sooner rather than later, and catch any cancers early.

Advice for young people on the fence about colonoscopy

There are several screening options out there, she shared, and there are coverage options for a colonoscopy and/or an at home test, if your doctor wants you to have one and you’re at the screening age. Insurance should cover preventive screenings for patients 45 years and older. Make sure to check how often you need to be tested based on the type of test you choose.

If you need a colonoscopy and are either younger than the screening age of 45, or you need it because you’re seeing symptoms, there are resources that may help cover the test. These include financial health foundations, payment plans at your doctor’s, and programs to help people under the age of 45 who are having symptoms, meaning the colonoscopy will not be considered “preventive” by insurance. Hospital social workers are a helpful resource for finding funding.

“No matter your age, I would tell people in their 20s and 30s and early 40s, if you are having symptoms: One, don't diagnose yourself with the Internet, and two, don't assume you have colorectal cancer but don’t delay getting checked out,” Ripley-Burgess said.

“You really need to keep an eye on your symptoms. If things really don't resolve quickly, you need to see a doctor. I am a big advocate for going ahead and getting a colonoscopy if you're having GI issues and signs of colorectal cancer and you’re young.”

Ripley-Burgess on her way to a Fight CRC Call-On Congress event.

Fight CRC and Young-Onset CRC Advocacy

Decision to become a Fight CRC advocate

Ripley-Burgess initially connected with Fight CRC as a patient to share her story. At the time, the organization was trying to reach more cancer survivors, particularly those who were not into policy and did not understand research, and they asked for her help.

Given her background in Communications, she was a perfect fit for the role. She led them to take an approach that reached out to the wider community with education and awareness first, and then explained to them what Fight CRC was doing in policy and research. It worked! Fight CRC has continued to grow, and more and more advocates join the organization each year.

For five years, she served as the organization’s first Director of Communications. Now she is Fight CRC’s Vice President of Disease Awareness & Education and Chief Storyteller.

Overview of role as VP Disease Awareness & Education and Chief

As VP, she gets to fuse her experience into pointing the compass in the right direction for how her team can make people aware of CRC and preventive screenings—both for people of screening age and under, and how they can guide people through the disease if they’re facing it.

“I also get to focus on truly guiding people through this disease from the day of diagnosis through either end-of-life care or long-term survivorship care, every step of the way,” Ripley-Burgess said. “We want to be there providing resources and support for people who we uniquely know what they've been through. We've got something for everybody.”

Find out your risk for colorectal cancer by taking a quiz that Ripley-Burgess and Fight CRC designed. Access the quiz here.

The story about young onset CRC that still needs telling

The story that’s being told now, Ripley-Burgess said, is that colorectal cancer is on the rise in younger people, and the reason that is receiving more coverage is because the data is there to support it.

“I think the next story that I hope and pray the data comes to support is the ‘why.’ I think that's what we all want to know is: ‘Why is it happening?’ she said. “There are so many theories and lots of research going on to uncover why, but we don’t have the definitive answers yet.”

For now, she says, what we can do is provide education and outreach about signs and symptoms, urge people to see a doctor if something’s off, and the importance of knowing your family history.

Conversations around lowering screening age and insurance coverage

The issue of getting screened under the age of 45 (the recommended age for first colonoscopy) and being covered for it, continues to be tremendously complex.

When we boil it down, Ripley-Burgess told me, we can be as loud as we want that people should get younger than 45, but if a 30-year-old can't afford a $500 co-payment, or a $2,000 colonoscopy bill, then they're not going to get screened. This is why data must drive the policy and national guidelines, because this is what insurance payers will follow.

“That's where our advocacy work is in understanding all of this. We always say we're like conveners that catalyze these conversations and in all these spaces,” she said. “We’re working to get all of these groups talking and working together—that’s what it’s going to take.”

Ripley-Burgess at Congressional Meetings on Capitol Hill during one of Fight CRC’s Call-On Congress annual events. CRC survivors and advocates join from around the country at Call-On Congress each year to meet with their state representatives to advocate for more funding for CRC research and policy changes.

What it will take to lower screening age to under 45

Ripley-Burgess has gotten a glimpse as an advocate of how things work in Washington, DC, and how they work in the research world.

Funding research and data analysis that then showed colorectal cancer cases rising in certain age groups is what got us from 50 to 45 as the age recommended for first screening for average-risk patients, she tells me. Fight CRC was involved in helping to advocate for change and pushing for that research data, and it took years.

“Data is what is needed to create systemic change—the kind of change that applies to everybody,” Ripley-Burgess said. “I'm a young patient. I get it, and I get the anger. It's an injustice that we're all facing. Sometimes the answer we grasp for is the answer we understand. So, in our minds, if we are not in the research lab, and we're not in this day-to-day, we think we should just lower the screening age, right?”

The problem is, as she pointed out, everyone is going to give you a different answer on what age that should be.

“What age it should be lowered to will be found out through research and data. And we will have more power as a community and in early-age onset colorectal cancer advocacy, if we come together in support of the same thing,” Ripley-Burgess said. “We need to support the work that will help us continue to understand why this is happening, and at what age we can start screening to prevent the most cases.”

Perspective on Life After Cancer

When she thinks about the past two decades, it is hard to think of anything in her life that being diagnosed with cancer at young age has not intertwined with. Yet, she has “seen light come from the darkness.”

She married her caregiver, lost her fertility because of treatment but had the beautiful experience of becoming a mom through adoption, and cancer guided her to the job that she loves to do.

Through it all, her mission and passion to educate and advocate for CRC awareness and those with young-onset disease has remained.

“I’m a 23-year survivor. When I was diagnosed, colorectal cancer was still seen as a grandparent’s disease. Now, 23 years later, colorectal cancer is projected to be the top cancer killer among guys our age and second among gals,” Ripley-Burgess emphasized. “Early-age onset colorectal cancer is a huge priority for us at Fight CRC. We are putting a lot of efforts behind it and will keep on it because we know how many lives are at stake it if we don’t.”

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An Interview with Danielle Ripley-Burgess of Fight CRC