Early-onset facts | #N2Y Advocacy agenda | Clinical practice update | N2Y lived-experience | Never assume survey | N2Y awareness | Become a N2Y champion
'You have bowel cancer' - four words you don't expect to hear when you're young.
Yet each year over 1,700 young Australians do.
It is a common misconception that bowel cancer is 'an old person's disease', but the reality is that you should never be told that you are too young to have bowel cancer. Although the majority of newly diagnosed bowel cancer cases occur in people aged 50 years and over, around 1 in 9 (11%) Australians diagnosed with bowel cancer are under the age of 50.
Never2Young is an initiative of Bowel Cancer Australia, providing resources uniquely designed for younger people. Helping younger Australians to better understand their bowel cancer risk and to take appropriate action, raise much-needed awareness and receive dedicated support that is tailored to the needs of early-onset patients.
Factors like My Genes, My Family, My Health, My Body, My Lifestyle and My Right can all play a contributing role when it comes to bowel cancer in younger people.
Being young does not make you immune to bowel cancer. No one knows your body better than you, so listen to it and if something isn't right make an appointment to speak with your doctor as soon as possible. If caught in time, almost 99 per cent of bowel cancer cases can be successfully treated.
| #N2Y Advocacy Agenda
Bowel Cancer Australia’s Never2Young Advocacy Agenda seeks to improve care experiences and health outcomes for younger people by championing -
- Greater awareness: among the community and health professionals of early-onset bowel cancer.
- Lower screening age: in response to the increasing rates of bowel cancer in younger people.
- Prompt GP referral: to a colonoscopy for all younger people who present with symptoms that may be consistent with bowel cancer.
- Improved pathways: that ensure timely triage, diagnosis and treatment for younger people.
- Better understanding: the challenges of early-onset bowel cancer to improve and tailor treatment, support and care for younger patients.
- Further research: into the causes of early-onset bowel cancer, that has the potential to improve survival and/or help build a path toward a cure.
Help us to challenge perceptions and create a powerful voice for change by sharing our Never2Young Advocacy Agenda and your lived experience.
| Bowel cancer in younger people - the facts
Bowel cancer is the deadliest cancer and the seventh underlying cause of death overall for Australians aged 25-44.
- 1,716 Australians under age of 50 are diagnosed with bowel cancer each year (11% of all bowel cancer cases).
- 315 people under age 50 die from bowel cancer each year (5.8% of all bowel cancer deaths).
- 50.8% of early-onset bowel cancer cases are diagnosed in females, and 49.2% in males.
- Over 86% of people diagnosed with early-onset bowel cancer experience symptoms.
People born in 1990 onwards have double the risk of colon cancer and quadruple the risk of rectal cancer compared with people born in 1950.
- Over the past three decades there has been a 266% increase in bowel cancer incidence rates in adolescents and young adults (15-24 years).
- Bowel cancer is the fifth most common and seventh deadliest cancer for people aged 15-24.
- The proportion of bowel cancer located in the appendix was 85% for people aged 15-24 compared to only 3% for people older than 24.
- More females than males aged 15-24 developed bowel cancer.
- The five-year relative survival for people aged 15-24 was 96% (2014-18), which means adolescents and young adults have around a nine in ten chance of surviving five years after diagnosis relative to comparable people in the general population.
Unfortunately, Bowel Cancer Australia regularly receives feedback from younger bowel cancer patients who have initially had their signs and symptoms attributed to haemorrhoids, food intolerances, a normal part of recovery after having a baby or even just a result of living a hectic lifestyle.
Although many of the symptoms of bowel cancer are common to multiple health concerns, please do not accept "you're too young to have bowel cancer" as an explanation for your symptoms, ask your doctor to be referred for further investigations.
Although many of the symptoms of bowel cancer are common to multiple health concerns, please do not accept "you're too young to have bowel cancer" as an explanation for your symptoms, ask your doctor to be referred for further investigations.
Since the mid-1990s, the number of new bowel cancer cases has been increasing among young people both in Australia and internationally.
The trend is being driven by an increase in the number of left-sided colon cancers and rectal cancer in particular.
Early-onset patients are also more likely to be diagnosed with Stage III or IV bowel cancer, when the disease is more difficult to treat.
Missed symptoms and misdiagnosis can often delay the correct diagnosis in early-onset cases.
Younger people living with or beyond bowel cancer also face unique challenges in relation to sexual and fertility issues and career planning. They also experience feelings of isolation due to the common misconception that bowel cancer is an older person’s disease.
Published in the ANZ Journal of Surgery (8 June 2020), a Gold Coast study found growing evidence of increasing rates of bowel cancer in people under age 50 after reviewing 557 patients who received a colonoscopy between 2013 and 2017.
The findings correlate with published research in the Lancet Gastroenterology & Hepatology (May 2019), that found the number of people under age 50 diagnosed with colon (2.9%) and rectal (2.6%) cancer increasing significantly each year in Australia.
Published in the ANZ Journal of Surgery (8 June 2020), a Gold Coast study found growing evidence of increasing rates of bowel cancer in people under age 50 after reviewing 557 patients who received a colonoscopy between 2013 and 2017.
The findings correlate with published research in the Lancet Gastroenterology & Hepatology (May 2019), that found the number of people under age 50 diagnosed with colon (2.9%) and rectal (2.6%) cancer increasing significantly each year in Australia.
In response to rising rates of bowel cancer incidence and mortality in young and middle-aged populations, recommendations to lower the screening age were first introduced in the United States in 2018, when the American Cancer Society (ACS) updated their guidelines, recommending people at average risk should begin screening from age 45.
By 2021, the American College of Gastroenterology (ACG), the US Preventive Services Task Force (USPSTF), and the US Multi-Society Task Force (MSTF) on Colorectal Cancer (CRC), had all joined ACS in updating their guidelines to recommend screening from age 45 rather than age 50, based on modelling studies which demonstrated the benefits of screening in younger individuals outweigh the harms and costs.
We know this is a start, but there’s still a lot of work to be done.
Of the top 10 cancers in Australia, bowel cancer is the only cancer that showed an increase in mortality rates from 2008 to 2018, projected to 2021 for people aged 45-49.
A 45-year-old today has the same bowel cancer risk a 50-year-old had 10 years ago.
Screening from 45 has been shown to be potentially cost-effective for the National Bowel Cancer Screening Program, would reduce the number of bowel cancer cases and deaths, and increase demand for colonoscopy services, depending on participation.
Australia can’t afford to wait another 12 years for our medical guidelines to be updated before taking action.
If you or a loved one, no matter your age, are experiencing bowel cancer symptoms, talk with your GP and advocate for your own health.
Of the top 10 cancers in Australia, bowel cancer is the only cancer that showed an increase in mortality rates from 2008 to 2018, projected to 2021 for people aged 45-49.
A 45-year-old today has the same bowel cancer risk a 50-year-old had 10 years ago.
Screening from 45 has been shown to be potentially cost-effective for the National Bowel Cancer Screening Program, would reduce the number of bowel cancer cases and deaths, and increase demand for colonoscopy services, depending on participation.
Australia can’t afford to wait another 12 years for our medical guidelines to be updated before taking action.
If you or a loved one, no matter your age, are experiencing bowel cancer symptoms, talk with your GP and advocate for your own health.
Knowing your family history is also vital. You may need to begin screening even earlier depending on your individual circumstances.
Bowel Cancer Australia recognises lowering screening guidelines is one step forward for people aged 45 and older, but it doesn’t address the rise in early-onset bowel cancer, which is now the sixth leading cause of death for Australians aged 25-44.
| ACG Clinical Guidelines & AGA Practice Updates
In March 2021, the American College of Gastroenterology (ACG) published updated clinical guidelines, which recommend screening start at age 45 for people of average risk to reduce incidence and death from bowel cancer as well as incidence of advanced adenoma.
In October 2020, the American Gastroenterological Association (AGA) published a new clinical practice update on young adult-onset bowel cancer that provides best practice advice that has been shown to work effectively and produce successful outcomes, which can be immediately implemented in patient care.
In October 2020, the American Gastroenterological Association (AGA) published a new clinical practice update on young adult-onset bowel cancer that provides best practice advice that has been shown to work effectively and produce successful outcomes, which can be immediately implemented in patient care.
The purpose of this clinical practice update is to highlight the importance of the rise of bowel cancer in young adults, summarise the epidemiological and genetic features of young adult–onset bowel cancer, and present an approach for the work-up and treatment in young adults with bowel cancer.
- BEST PRACTICE ADVICE 1 - With the rising incidence of people developing bowel cancer before 50 years of age, diagnostic evaluation of the colon and rectum is encouraged for all patients, irrespective of age, who present with symptoms that may be consistent with bowel cancer, including but not limited to: rectal bleeding, weight loss, change in bowel habit, abdominal pain, iron deficiency anaemia.
- BEST PRACTICE ADVICE 2 - Specialists should obtain family history of bowel and other cancers in first- and second-degree relatives of patients with young adult–onset bowel cancer and discuss genetic evaluation with germline genetic testing either in targeted genes based on phenotypic presentation or in multiplex gene panels regardless of family history.
- BEST PRACTICE ADVICE 3 - Specialists should present the role of fertility preservation prior to cancer-directed therapy including surgery, pelvic radiation, or chemotherapy.
- BEST PRACTICE ADVICE 4 - Specialists should counsel patients on the benefit of germline genetic testing and familial cancer panel testing in the pre-surgical period to inform which surgical options may be available to the patient with young adult–onset bowel cancer.
- BEST PRACTICE ADVICE 5 - Specialists should consider utilising germline and somatic genetic testing results to inform chemotherapeutic strategies.
- BEST PRACTICE ADVICE 6 - Specialists should offer hereditary bowel cancer syndrome specific screening for bowel cancer and extra-colonic cancers only to young adult–onset bowel cancer patients who have a genetically or clinically diagnosed hereditary bowel cancer syndrome. For patients with sporadic young adult–onset bowel cancer, extra-colonic screening and bowel cancer surveillance intervals are the same as for patients with older adult–onset bowel cancer.
The update states that the signs and symptoms that prompt healthcare providers to consider a diagnostic bowel exam for a person over 50 should prompt a diagnostic colonoscopy exam for the person under 50 years of age.
| Peer-to-Peer Support and sharing lived experiences
Bowel Cancer Australia is fortunate to have a very active community of young people living with or beyond bowel cancer, and their loved ones.
Many young bowel cancer patients say that they can feel quite alone and isolated when first diagnosed with bowel cancer and during their bowel cancer journey.
Often because there is a common misconception in the community that bowel cancer only affects older people and also because many of the other bowel cancer patients they encounter during treatment are older.
Parents with young children, people just starting out in their career, singles, university students and newly-weds – younger bowel cancer patients can quite often be in a different life stage to those diagnosed at an older age.
Having a child diagnosed with bowel cancer can also be very difficult.
The ability to talk with others who know what you are going through can be very helpful, and that is what Bowel Cancer Australia's Peer-to-Peer Network is all about – connecting people living with or beyond bowel cancer and loved ones with others in a similar situation.
Sharing your story and experiences to raise awareness and help others is also a big part of Bowel Cancer Australia's Peer-to-Peer Network.
You can read the inspiring bowel cancer stories of many young bowel cancer patients and their loved ones and/or submit your story here.
Many young bowel cancer patients say that they can feel quite alone and isolated when first diagnosed with bowel cancer and during their bowel cancer journey.
Often because there is a common misconception in the community that bowel cancer only affects older people and also because many of the other bowel cancer patients they encounter during treatment are older.
Parents with young children, people just starting out in their career, singles, university students and newly-weds – younger bowel cancer patients can quite often be in a different life stage to those diagnosed at an older age.
Having a child diagnosed with bowel cancer can also be very difficult.
The ability to talk with others who know what you are going through can be very helpful, and that is what Bowel Cancer Australia's Peer-to-Peer Network is all about – connecting people living with or beyond bowel cancer and loved ones with others in a similar situation.
Sharing your story and experiences to raise awareness and help others is also a big part of Bowel Cancer Australia's Peer-to-Peer Network.
You can read the inspiring bowel cancer stories of many young bowel cancer patients and their loved ones and/or submit your story here.
| Never assume: early-onset bowel cancer survey
Mainstream support services, awareness programs and resources can often be aimed at older people, leaving early-onset bowel cancer patients feeling that their needs are not being met.
Bowel Cancer Australia is different.
We champion what matters most to people living with or beyond bowel cancer, making real change happen across the entire continuum of care. Including patients diagnosed with the disease under the age of 50, and their loved ones.
That’s why we want to know what matters most to you, so that we may improve our programs and initiatives and maximise the impact of our efforts in helping to save young lives and improve the health and wellbeing of young people living with bowel cancer.
The experiences of both young patients and their loved ones are important, so there are two different surveys available. The Loved One Survey includes questions specific to caregivers, as well as an added option to complete the Patient Survey on behalf of a young loved one who has passed away.
The survey will take no more than 15 minutes of your time, but it will make a big difference to shaping the future of prevention, early diagnosis, research, quality treatment and the best care for young Australians affected by bowel cancer.
| N2Y Awareness
Help bring early-onset bowel cancer to the forefront of the conversation. You have the ability to get people talking.
So please get on board for this dedicated campaign, share your story and advice to other young people, raise funds and encourage others to do the same!
The Never2Young initiative was first launched by the Never Too Young Coalition - a group of medical professionals, patient advocacy organisations, cancer survivors and caregivers working to educate the public about the growing issue of bowel cancer diagnoses in younger people and reduce the number of late stage early-onset cases.
Founded by the Colon Cancer Alliance, the Coalition brought together like-minded organisations from the United States of America, United Kingdom and Bowel Cancer Australia - with an aim to help address the rise in bowel cancer diagnoses and mortality rates in younger people.
The global collaboration had a decisive mission: educating the public that you’re never too young for bowel cancer, the fourth leading cause of cancer death in the world and second deadliest cancer in Australia, and arming people with the resources and tools to incite change.
The Never Too Young Coalition developed international awareness campaigns and a webinar series, and funds various research studies.
Bowel Cancer Australia raises N2Y Awareness to champion and advocate for early-onset bowel cancer patients in Australia.
If you are living with or beyond early-onset bowel cancer, or are a loved one, and would like to become a #N2YChampion,
please register your interest on our contact us webpage.
