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Report: 82% of Young-Onset Colorectal Cancer Patients Were Misdiagnosed

Colorectal Cancer Alliance survey report shows 73% of young-onset patients presented with advanced-stage disease, and 45% were caring for a child under 10 years old at the time of diagnosis.

December 14, 2017 (Washington, D.C.) – The results are in from a groundbreaking global survey of young-onset colorectal cancer survivors, and the concluding report confirms startling data published by researchers and clinicians in the field, while adding the perspective of survivors.

National nonprofit Colorectal Cancer Alliance received 1,535 survey responses over a one-month period from young-onset colorectal cancer survivors who were diagnosed with the disease prior to turning 50 years old. This group of survivors is notable as colorectal cancer is widely considered a disease that afflicts seniors, but the incidence rate in young people is climbing.

Results show a population of survivors who often faced barriers to screening due to their age, were most often misdiagnosed at the start of their journey, and then received a diagnosis of late-stage colorectal cancera disease that is highly treatable if caught early.

More survey results include:

  • 15% reported that an emergency room visit led to a colonoscopy and their diagnosis
  • 62% did not have a family history of colorectal cancer
  • 67% saw at least two doctors before being diagnosed with cancer
  • 71% were diagnosed with colon cancer, and 20% were diagnosed with rectal cancer
  • 82% were initially misdiagnosed before ultimately being diagnosed with colorectal cancer

“This survey report puts a much-needed focus on the experience of young-onset colorectal cancer patients and survivors, who are experiencing subpar care due to a lack of understanding about this issue among physicians and young people alike,” said Michael Sapienza, CEO of Colorectal Cancer Alliance. “The Alliance stands ready to make a positive impact in this area, but data is prerequisitethis report will help shape our efforts.”

The Colorectal Cancer Alliance has committed to investing $3 million for young-onset colorectal cancer research over three years. To kick off the initiative, the Alliance will announce in January the recipient of a $125,000 peer-reviewed research grant from the Chris4Life Research Program, which will fund research into young-onset colorectal cancer.

Since 1994, diagnosis of colorectal cancer in adults ages 20-49 have increased by 51%, according to the National Cancer Institute. There is not a consensus as to why the rate is climbing and there is need for more research in this area.

“We received responses from 26 countries on six continents that together show a global issue of colorectal cancer impacting people under the age of 50, demanding further research and deliberate action to save lives,” said Patrice Brown, senior director of program development at the Colorectal Cancer Alliance. “Far too often we hear stories about colorectal cancer impacting young lives. This report gatherers these stories in one place, giving voice to the unique challenges of young-onset patients and survivors.”

Colorectal cancer is highly treatable if detected early, but because the standard screening age is 50 and patients often aren’t aware of the symptoms of colorectal cancer, the disease is often overlooked in young people, resulting in lack of treatment and eventual diagnosis at later stages.

The report also includes personal feedback about the young-onset diagnosis and cancer journey from the survivors who have lived it. Themes that emerged included challenges related to symptoms being taken seriously by doctors when seeking a diagnosis, finding age-appropriate support, and sexual function during and after treatment.

For more information visit ccalliance.org or download the report here.

About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors, eagerly raise awareness of preventative screening, and continually strive to fund critical research. As allies in the struggle, we are fiercely determined to end colorectal cancer within our lifetime. For more information, visit ccalliance.org.

Never Too Young Advisory Board

Colorectal Cancer Alliance Launches First Never2Young Advisory Board to Address the Rise of Young Onset Colorectal Cancer

Fifty-One Percent Increase in Colorectal Cancer in Adults, Ages 20-49, Since 1994

December 4, 2017 (Washington, D.C.) – The Colorectal Cancer Alliance convened the inaugural Never2Young (N2Y) Advisory Board to address the concerns and needs of young colorectal cancer survivors, who are often overlooked due to their age because it’s typically seen in adults over 50 years old. This past weekend, more than 20 board membersall of whom are under 50 years oldconvened at Georgetown Lombardi Cancer Center in Washington, D.C., to strategize the best way to serve survivors and caregivers, such as:

  • Creating ageless resources to educate young people and medical professionals about this rising incidence of colorectal cancer;
  • Leveraging social media to save the lives of young people from a disease they don’t even realize they have the potential to get;
  • And developing resource guides for young onset colorectal cancer survivors and their caregivers to help them on their journey.

“Through local and national efforts we plan to raise awareness about young onset colorectal cancer and remove the stigma of colorectal cancer,” said Kim Newcomer, Never2Young program manager at the Colorectal Cancer Alliance. “One of the most powerful tools we have is education. We must take this message directly to young people and the medical community.”

Since 1994, diagnosis of colorectal cancer in young adults, ages 20-49, have increased by 51%, according to the National Cancer Institute. Colorectal cancer is highly treatable if detected early, but because the standard screening age is 50, young people with the disease tend to be diagnosed at later stages.

The N2Y Advisory Board provides a strong voice for the young onset colorectal cancer community by going straight to the source: All of the members have been directly impacted by colorectal cancer, either as a survivor or patient. Members flew into Washington for the meeting from across the country.

“It is important for me to be here as an advocate to bring awareness about young onset colorectal cancer and to let people know an early diagnosis is possible when you have the right information and become an advocate for your health,” said Anna Dahlgren, a N2Y Advisory Board member who was diagnosed with stage 1 colon cancer at the age of 32.

The Colorectal Cancer Alliance has also committed $3 million over the next three years to raise awareness and fund research to put an end to colorectal cancer in young adults.

For more information about the Never2Young Advisory Board and the Colorectal Cancer Alliance’s efforts to end young onset colorectal cancer, please visit www.ccalliance.org.

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About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors, eagerly raise awareness of preventative screening, and continually strive to fund critical research. As allies in the struggle, we are fiercely determined   to end colorectal cancer within our lifetime. For more information, visit nationofallies.org.

Baltimore Ravens Tight End Raises Awareness for Young Onset Colorectal Cancer & Honors Uncle During the NFL’s My Cause My Cleats Charity Week

WHAT: National non-profit the Colorectal Cancer Alliance will be making its first NFL awareness debut during the league’s My Cause My Cleats Charity Week, which allows players to share causes that mean a lot to them. Before games, players wear personalized cleats prior to warm-ups and have more color options available during the game. With the theme “Don’t Fumble On Getting Screened for Colon Cancer”, Baltimore Ravens third year tight end Maxx Williams will be wearing custom cleats during this Sunday’s game against the Detroit Lions to raise awareness about young onset colorectal cancer and in memory of his uncle, Paul “Chumly” Scheuble, who passed away this year from the disease at the age of 48. Post game, Maxx will be giving his custom cleats to his aunt. Maxx tweeted a preview of his cleats and mentioned his partnership with the organization.

“First on behalf of the entire Colorectal Cancer Alliance, we want to send our heartfelt thanks to Maxx Williams and his family for helping to spread awareness for this disease,” said Michael Sapienza CEO of Colorectal Cancer Alliance. “It is incredibly important for the NFL and individuals like Maxx to continue to bring Colorectal Cancer into mainstream conversations.”

In 2018, the Colorectal Cancer Alliance has committed $3 million dollars to young onset in the areas of awareness, patient support and research.  

The latest young onset colorectal cancer statistics and facts*:

  • Colorectal cancer incident rates in adults aged under 50 rose by 1.6% from 2000 to 2013;  
  • From 2000 to 2014, colorectal cancer death rates increased by 13% in those aged under 50 years;
  • There has been a 51% increase in young onset colorectal cancer incidence within the 20-49 age group since 1994;
  • Without action, researchers predict that by 2030 more than 1 in 10 colon cancers and nearly 1 in 4 rectal cancers will be diagnosed in people under 50.

*Source: Colorectal Cancer Statistics, 2017″ from CA: A Cancer Journal for Clinicians  

WHEN: Sunday, December 3, 2017 – Baltimore Ravens vs. Detroit Lions

TIME: 1:00PM Kickoff

WHERE: M&T Bank Stadium, Baltimore, MD

 

ADDITIONAL INFO:

Colorectal cancer is the second leading cause of cancer related deaths in men and women combined.

With the strategic mission of servicing both colon and rectal cancer patients, combined with fierce determination to end colorectal cancer within our lifetime, the Colorectal Cancer Alliance has set three ambitious goals:  

  • Double the number of patients served by 2021
  • Save 100,000 lives with preventive screening in the next 10 years
  • Invest $10 million in critical research

The American Cancer Society estimates that this year 150,000+ people will be diagnosed with colorectal cancer, and close to 50,000+ will lose their life to the disease. I f caught early, colorectal cancer is up to 90% beatable.

SOCIAL MEDIA:

Twitter: @ccalliance @williams_maxx @ravens @nfl
Instagram: @colorectalcanceralliance

Facebook: Facebook.com/ColorectalCancerAlliance

Hashtags: #MyCauseMyCleats #TomorrowCantWait

 

About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors, eagerly raise awareness of preventative screening, and continually strive to fund critical research. As allies in the struggle, we are fiercely determined to end colorectal cancer within our lifetime. For more information, visit ccalliance.org.

Abimbola ‘Bim’ Fernandez, daughter of gem magnate Chief Aduke O Fernandez, is selling garments from a private collection that will benefit the Colorectal Cancer Alliance.

Sale of vintage haute couture garments will benefit Colorectal Cancer Alliance

Abimbola ‘Bim’ Fernandez, daughter of gem magnate Chief Aduke O Fernandez, is selling garments from a private collection that will benefit the Colorectal Cancer Alliance.

Abimbola ‘Bim’ Fernandez, daughter of gem magnate Chief Aduke O Fernandez, is selling garments from a private collection that will benefit the Colorectal Cancer Alliance.

The Real Real, an online luxury consignment shop, is selling more than 800 garments from a private collection—including fashions from Valentino, Chanel, and Oscar de la Renta—that will benefit the Colorectal Cancer Alliance.

The couture collection, titled “The Collection of Chief Aduke O Fernandez,” is owned and curated by Abimbola ‘Bim’ Fernandez, whose mother, Chief Aduke O’ Fernandez, passed away from colon cancer in 2013.

The collection comprises one-of-a-kind vintage designer gowns and a ready-to-wear selection made for Abimbola Fernandez’s mother by top fashion houses. Garments were worn among world dignitaries, such as President Nelson Mandela, President Dos Santos of Angola, and Prince Rainier III.

Abimbola Fernandez is donating a portion of the proceeds from the sale of the garments to the Colorectal Cancer Alliance. Fashionistas interested in viewing items for sale from the collection can visit www.abimbolafernandez.com (click on the “shop” tab).

“The Alliance is deeply grateful for this act of charity by Bim, who is a true ally,” said Michael Sapienza, CEO. “As seen here, fashion can be a powerful force for good in the world that can also raise awareness and funds to benefit patients across the country.”

Abimbola Fernandez’s mother married her father, Ambassador Deinde Fernandez, in 1982. Her father was a diplomat and ambassador to the United Nations for the Central African Republic. He was also the country’s prime minister of foreign affairs. Together, Deinde Fernandez and Chief Aduke O’ Fernandez built a gem and precious metals empire. Deinde Fernandez passed away in 2015.

Colorectal cancer is the second-leading cause of death related to cancer in the U.S., but it is highly treatable if detected early. In 2017 alone, over 135,000 people are expected to be diagnosed with colorectal cancer.

About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors, eagerly raise awareness of preventative screening, and continually strive to fund critical research. As allies in the struggle, we are fiercely determined to end colorectal cancer within our lifetime. For more information, visit nationofallies.org.

Colon Cancer Alliance Announces Corporate Name Change

National Non-Profit Begins A New Chapter Revealing New Name, New Logo, & Inclusive Mission

November 2, 2017 (Washington, D.C.) –  Effective immediately, the Colon Cancer Alliance is now the Colorectal Cancer Alliance, embracing the entire colorectal cancer community, adopting a new name, and committing to a powerful mission: To empower a nation of allies who work with us to provide support for patients and families, caregivers, and survivors; to raise awareness of preventative measures; and inspire efforts to fund critical research. The official rebrand brings an inclusive identity that ensures accuracy, leadership, and most important- alliance within the colorectal cancer community.

The Launch of a Nation of Allies – The name change is part of a larger rebranding effort for the organization which includes a new logo and visual identity, new website, and commitment to accuracy for the entire colorectal cancer community.

With the strategic mission of servicing both colon and rectal cancer patients, combined with fierce determination to end colorectal cancer within our lifetime, the Colorectal Cancer Alliance set three ambitious goals:  

  • Double the number of patients served by 2021
  • Save 100,000 lives with preventive screening in the next 10 years
  • Invest $10 million in critical research

The organization launched nationofallies.org a national network for advocates and allies to show their support in eliminating colorectal cancer within our lifetime and highlight ways individuals can educate their local communities on prevention and screening options. The focus of the “Nation of Allies” theme is to empower individuals to work with the Colorectal Cancer Alliance to provide support to patients and families, survivors, and caregivers, to raise awareness of preventative measures, and to inspire efforts to fund critical research.

“On behalf of the entire Colorectal Cancer Alliance community, we are beyond thrilled to be launching this new name, logo and visual identity to help continue to grow as the leading resource for patients and families,” said Michael Sapienza, CEO of the Colorectal Cancer Alliance.  The Colorectal Cancer Alliance is the oldest, largest colorectal cancer non-profit in the nation and I am proud to part of this amazing evolution” Michael Sapienza, CEO, Colorectal Cancer Alliance.

Nearly a third of all colorectal cancers diagnosed this year will be rectal cancer. Nearly 40,000 new U.S. cases of rectal cancer will be diagnosed in 2017 alone. Colon cancer and rectal cancer are often grouped together because they have a lot in common—including symptoms—but they are different, depending on where they originate. Through this rebrand, the Colorectal Cancer Alliance has extended its reach into the colorectal cancer community by 30% while committing to align a nation of allies, together in the mission to end this disease.

“We share a common goal of eradicating colorectal cancer through prevention and early detection,” said Kevin Conroy, chairman and CEO of Exact Sciences and long time national partner of the Colorectal Cancer Alliance. “As this new chapter begins for the Colorectal Cancer Alliance, we are committed to working together to increase awareness about the importance of getting screened for this preventable disease.”

The name change and brand reveal debuted alongside the 2017 Tomorrow Can’t Wait National Conference at the Cleveland Clinic on November 1st. Conference attendees consisting of patients, survivors, and caregivers, had front row seats and true VIP access at the Rock & Roll Hall of Fame for the official kick-off. The nonprofit decided on the Rock & Roll Hall of Fame from so many requests from cancer patients attending the conference. You can visit the Facebook live rebrand announcement at tomorrowcantwait.org.

“To be surrounded by patients and families at such a historic event, celebrating new beginnings and amazing accomplishments is truly one of the most important nights of my life. We are grateful to this nation of allies supporting our vision: A world free of colorectal cancer within our lifetime” Michael Sapienza, CEO.

The Colorectal Cancer Alliance worked with Alexandria, VA based creative agency Grafik on the new identity and overall rebranding efforts.

To learn more about the rebrand and Colorectal Cancer Alliance, visit nationofallies.org.

 

About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors, eagerly raise awareness of preventative screening, and continually strive to fund critical research. As allies in the struggle, we are fiercely determined to end colorectal cancer within our lifetime. For more information, visit nationofallies.org.