N2Y Survey - Patient (FINAL)

'Never Assume' Young-Onset Bowel Cancer Survey - Patient

You have bowel cancer…. Four words you don't expect to hear when you're young.

Yet each year over 1,400 young Australians do.

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 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.

About me

My date of birth is

I am*

male female undisclosed

My relationship status is*

never married / partnered married / partnered divorced / separated widowed

My ethnicity is

I live in (State)*

ACT NSW NT TAS QLD SA VIC WA I live outside Australia

My Country is

Answer if living outside Australia

The highest level of schooling I completed was*

primary (Years K-7) secondary (Years 8-12) tertiary (college or university) None

Age details

My bowel tumour (What was your stage at diagnosis)

According to the TNM staging system, my cancer *

had not grown beyond the inner layer (mucosa) of the bowel (Tis) had grown through the muscularis mucosae into the submucosa (T1) had grown into the muscularis propria (T2) had grown into the outermost layers of the bowel but has not gone through them (T3) had grown through the wall of the bowel but has not grown into other nearby tissues or organs (T4a) had grown through the wall of bowel and is attached to or has grown into other nearby tissues or organs (T4b) could not be measured or assessed (TX) Unknown

My cancer

had not spread to nearby lymph nodes (N0) had spread to 1 to 3 nearby lymph nodes (N1) had spread to 4 to 6 nearby lymph nodes (N2a) had spread to 7 or more nearby lymph nodes (N2b) could not be assessed due to a lack of information (NX) Unknown

My cancer

had not spread to distant sites (M0) had spread to 1 distant organ (such as the liver or lung) or distant set of lymph nodes, but not to distant parts of the peritoneum (the lining of the abdominal cavity) (M1a) had spread to more than 1 distant organ (such as the liver or lung) or distant set of lymph nodes, but not to distant parts of the peritoneum (the lining of the abdominal cavity) (M1b) had spread to distant parts of the peritoneum (the lining of the abdominal cavity), and may or may not have spread to distant organs or lymph nodes (M1c) was unable to be assessed to determine if it had spread (MX) Unknown

A biopsy of my tumour was taken*

Yes No Don't know

My tumour biopsy indicated the presence of the BRAF mutation

Yes No Not tested Unknown

My tumour biopsy indicated the presence of the RAS mutation

Yes No Not tested Unknown

My tumour biopsy indicated the presence of the microsatellite instability (MSI) mutation

Yes, MSI-low Yes, MSI-high No Not tested Unknown

My tumour biopsy indicated the presence of germline MMR or EPCAM gene mutations (Lynch Syndrome)

Yes No Not tested Unknown

My tumour biopsy indicated the presence of germline MMR or EPCAM gene mutations (Lynch Syndrome)

Yes No Not tested Unknown

My bowel tumour (What is your stage currently)

According to the TNM staging system, my cancer *

has not grown beyond the inner layer (mucosa) of the bowel (Tis) has grown through the muscularis mucosae into the submucosa (T1) has grown into the muscularis propria (T2) has grown into the outermost layers of the bowel but has not gone through them (T3) has grown through the wall of the bowel but has not grown into other nearby tissues or organs (T4a) has grown through the wall of bowel and is attached to or has grown into other nearby tissues or organs (T4b) could not be measured or assessed (TX) no evidence of disease (NED) Unknown

My cancer

has not spread to nearby lymph nodes (N0) has spread to 1 to 3 nearby lymph nodes (N1) has spread to 4 to 6 nearby lymph nodes (N2a) has spread to 7 or more nearby lymph nodes (N2b) could not be assessed due to a lack of information (NX) Unknown

My cancer

has not spread to distant sites (M0) has spread to 1 distant organ (such as the liver or lung) or distant set of lymph nodes, but not to distant parts of the peritoneum (the lining of the abdominal cavity) (M1a) has spread to more than 1 distant organ (such as the liver or lung) or distant set of lymph nodes, but not to distant parts of the peritoneum (the lining of the abdominal cavity) (M1b) has spread to distant parts of the peritoneum (the lining of the abdominal cavity), and may or may not have spread to distant organs or lymph nodes (M1c) was unable to be assessed to determine if it had spread (MX) Unknown

I have had NED (no evidence of disease) for

Less than 1 year 1-2 years 2-5 years 5-10 years 10+ years

My diagnosis

My family history and current health conditions

I have a family history of bowel cancer*

Yes No Unknown

My doctor spoke to me about genetic testing*

Yes No Unknown

I have a clinical diagnosis of Lynch syndrome (HNPCC)*

Yes No Unknown

I have a clinical diagnosis of Familial Adenomatous Polyposis (FAP)*

Yes No Unknown

I have a clinical diagnosis of Inflammatory Bowel Disease (IBD - including Crohn's disease or ulcerative colitis)*

Yes No Unknown

My financial and emotional considerations

At my diagnosis, I had all my questions answered and understood all the treatment options and risks*

Yes No Unknown

At some point during my diagnosis or treatment, a healthcare professional spoke with me about fertility preservation*

Yes No Unknown

A healthcare professional gave me information on young support groups or organisations*

Yes No Unknown

If yes, please describe

I participated in a clinical trial/s

Yes No Unknown

My feedback

The biggest challenge I face/faced as someone diagnosed with bowel cancer under the age of 50 is*

I would be happy to be contacted by Bowel Cancer Australia to further share my story and experiences*

Yes No

First Name*

Last Name*

Name

First Name

Last Name

Email*

Confirm Email *

Phone*

I found this questionnaire easy to understand

Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree

I felt the questions helped me to express my point of view

Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree

Case Type

Never2Young Patient Survey

Company