'You have bowel cancer' - four words you don't expect to hear when you're young.
Yet each year over 1,500 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 10 (10%) Australians diagnosed with bowel cancer are under the age of 50.
Bowel Cancer... You're Never Too Young 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 young-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.
| Bowel cancer in younger people - the facts
- 15,352 Australians are diagnosed with bowel cancer each year, 1,531 (10%) of whom are under the age of 50.
- Of the 5,336 Australians who die from bowel cancer each year, 272 (5%) are under the age of 50.
- Both men and women are at risk of developing bowel cancer.
- Of those diagnosed with young-onset bowel cancer, 49.2% are male and 50.8% are female.
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 a living 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.
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
- Bowel cancer incidence rates among young people are increasing both in Australia and internationally
- There has been a 186% increase in bowel cancer cases in adolescents and young adults (15-24 years) over the past three decades
- Bowel cancer is the most common cause of cancer death for those aged 25–29, while bowel cancer and brain cancer are responsible for the greatest number of cancer deaths for those aged 30–34
- The five-year relative survival for young Australians aged 15-24 diagnosed with bowel cancer is 87.3%, which means young people have around an eight in ten chance of surviving five years after diagnosis relative to comparable people in the general population.
The risk of bowel cancer increases with age, as indicated in the table below:
Risk of bowel cancer over next 10 years
Risk of bowel cancer over next 10 years
Note: Absolute risk is the observed or calculated probability of the occurrence of bowel cancer in a population.
| AGA Clinical Practice Update on Young Adult-Onset Bowel Cancer Diagnosis and Treatment
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 also 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 <50 years of age.
| Symptom diary
If symptoms persist beyond that time, people are encouraged to contact their GP and take the Symptom Diary with them to their appointment to use as an aid when sharing their concerns.
Specialists around the world agree that symptom awareness is critical in order to improve earlier detection, when 90 percent of bowel cancer cases can be successfully treated.
| Bowel cancer community, real life stories and personal 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.
| Never assume: young-onset bowel cancer survey
Mainstream support services, awareness programs and resources can often be aimed at older people, leaving young-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 is 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.
Bowel Cancer Australia, in collaboration with the Colorectal Cancer Alliance, will compare the Australian survey results with results from a similar survey conducted in the United States, to identify similarities and differences among young-onset patients and their caregivers across continents.
| N2Y Awareness
Your story is unique – just like you. So why not tell the world?
This is your chance to shout it loud and change someone’s life.
A Bowel Cancer Australia campaign dedicated to people like you who have been diagnosed with bowel cancer under the age of 50 and are now living with or beyond the disease. Sharing photos and stories to raise community awareness of bowel cancer and provide support to young people diagnosed with bowel cancer.
Annually in June each year (22-28 June 2020).
1 in 11 Australians diagnosed with bowel cancer are under the age of 50, and that number is growing. We’re not okay with that. You’re not either. Let’s shout it out and shake things up.
YOU! If you are living with or beyond bowel cancer - we’d love you to join our community of #Never2Young Champions, and to encourage your friends, family and everyone else you know (and maybe even people you don’t) to support N2Y Awareness too.
| N2Y Awareness - what we need you to do
'MY AGE WAS NOT A FACTOR' is the theme for #Never2Young Awareness Week 2020.
Download a #Never2Young awareness pack and social media placard from our online shop. There are placards for people living with or beyond bowel cancer, and also a version for loved ones.
Take a photo of yourself holding the placard and send your picture through to us using the webform available here. We’ll share your photograph throughout the campaign.
Keep a copy of your photograph handy and get ready to share it on your Facebook, Twitter and/or Instagram using the hashtags #Never2Young and #BowelCancerAustralia and tagging @BowelCancerAustralia (or @BowelCancerAust on Twitter) during the campaign.
Loved ones are encouraged to get involved and share photos too. Download the social media placard from our online store and then send your picture through to us using this webform.
Your story is unique, and your bowel cancer experience can be a big help to others.
What is the biggest challenge you (your loved one) faced as someone diagnosed with bowel cancer at a younger age?
Knowing what you do now, having been through bowel cancer yourself or with your loved one, what would be the one piece of advice you would give to another young person?
| N2Y Awareness is about you
Your passion and determination help bring young-onset bowel cancer to the forefront of the conversation. You have the ability to carry this message to the masses and 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 and awareness week was first launched by the Never Too Young Coalition.
The Never Too Young Coalition was 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 young-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 leading cause in Australia, and arming people with the resources and tools to incite change.
The Never Too Young Coalition developed such projects as Young Survivors Week, international awareness campaigns, a webinar series and various research studies.
Bowel Cancer Australia is proud to continue N2Y Awareness and to champion and advocate for young-onset bowel cancer patients in Australia.
If you are a young-onset patient living with or beyong bowel cancer or loved one and would like to become a #N2YChampion,
please complete the form below.