Diagnosis | Bowel cancer explained | Who gets bowel cancer? | Your diagnosis | Requesting a second opinion | Support for you
If you have just been diagnosed with bowel cancer, it can be overwhelming and come as a terrible shock.
You may be given a great deal of information that you have trouble remembering or understanding. It is likely that you will also experience a huge range of emotions during the period immediately after diagnosis, and you will probably have many questions to ask about your condition and its treatment.
As the news sinks in and you are ready to talk about what's going to happen, the most important thing to remember is that it's your body you are discussing. Don't be rushed into making decisions and don't be frightened to ask the doctor or nurse to explain things again if you don't understand.
You may also wish to request a second opinion.
Your cancer has a whole new language and it is going to be a while before you understand it all. The experts treating you can sometimes forget this – don't let them!
Your cancer has a whole new language and it is going to be a while before you understand it all. The experts treating you can sometimes forget this – don't let them!
At Bowel Cancer Australia our aim is to provide information for you to make this process as supportive and informative as possible.
Remember, you are not alone.
The first steps are to understand your diagnosis and what that will mean for you. Next, we will explain tests and treatments options, and lastly, what services we have available to help you.
| Bowel cancer explained
| Bowel cancer explained
Bowel cancer, also known as colorectal cancer, can affect any part of the colon or rectum; it may also be referred to as colon cancer or rectal cancer, depending on where the cancer is located.
The colon and rectum are parts of the large intestine.
The colon is the longest part of the large intestine (the first 1.8m). It receives almost completely digested food from the caecum (a pouch within the abdominal cavity that is considered to be the beginning of the large intestine).
The colon absorbs water and nutrients and then passes waste (stool/faeces/poo) to the rectum.
Bowel cancer affects men and women, young and old.
1 in 15 Australians will develop bowel cancer in their lifetime.
Around 30% of people who develop bowel cancer have a hereditary contribution, family history or a combination of both. The other 70% don’t have either a family or hereditary combination.
The risk of developing bowel cancer rises sharply and progressively from age 50, but the number of Australians under age 50 diagnosed with bowel cancer has been increasing steadily. That’s why it’s important to know the symptoms of bowel cancer and have them investigated if they persist for more than two weeks.
Almost 99% of bowel cancer cases can be treated successfully when detected early.
In order to have been diagnosed with bowel cancer, a biopsy of your tumour has been sent off to pathology and the analysis has revealed it as malignant which means that it is cancerous.
Now, you will have tests to work out if the cancer has spread to any other parts of your body.
This is a routine practice to ensure that you a completely looked after and to assess exactly what type of treatment you require. This process is known as ‘staging’.
Staging the cancer can tell you where it is located, its size, how far it has grown into nearby tissues and if it has spread into nearby lymph nodes or other parts of the body. Every cancer will be staged.
Tests and investigations can include: blood tests, X-Rays, CT scan, MRI, PET scan and/or an ultrasound.
Your specialist team should take the time to tell you what the results of each test are, why you need to have them and any further tests you need done.
If not, ask and make sure you take a pen and pad with you to your appointment so that you can take down all of the information, or alternatively take along a support person with you, so that they can do this for you.
Putting together your treatment plan
After all of this information is gathered, your team will put a treatment plan together, one that is specifically tailored to you - unique to your own personal circumstances.
It will depend on a number of factors, including the size and location of the cancer and your general health.
All decision making will be done jointly between you and your multi-disciplinary team (MDT).
Your doctors will help you to understand the advantages and disadvantages of what is being proposed so that you can be confident in the decisions taken, and satisfied that your individual needs and wishes have been fully considered.
Your nurse specialist will also make an assessment of your general health and fitness – known as Holistic Needs Assessment – and consider any underlying health problems.
It is also important that they understand what home and family issues need to be considered as well as any practical concerns, as these might also have an impact on your health and treatment choices.
This process will also help you to manage your own care much more effectively so that you will know when and how to ask for help.
Treatment
There are three main types of treatment for bowel cancer, based on surgery, chemotherapy and radiotherapy techniques.
There are three main types of treatment for bowel cancer, based on surgery, chemotherapy and radiotherapy techniques.
Depending on the stage and location of your cancer, you will usually receive one or a combination of these treatments.
You may also receive precision medicine or immunotherapy if your cancer has spread to other parts of the body.
| Requesting a second opinion
Patients sometimes choose to seek a second opinion from another specialist or hospital. This may be at the suggestion of family members keen to ensure all possible treatment options are being explored. Or it may be that patients are unhappy regarding their treatment pathway or decisions that have been made by their current team.
We would recommend that you discuss your concerns with your GP or specialist first. It may be that talking things through can address some of your concerns, allowing you to continue on your current pathway uninterrupted.
It is possible to get a second opinion by asking your GP or your current specialists to refer you on. Asking for a second opinion can feel uncomfortable, but it shouldn't be an issue. Most doctors would prefer that you are confident in your team and the treatment being planned.
A second opinion will require all your scans and reports to be sent over to the other specialist, and your case to be discussed at their multi-disciplinary team meeting. This will quite often mean a wait of a week or two to allow all of this to happen, which can be quite stressful.
Generally speaking, we wouldn't recommend delaying treatment in order to have a second opinion. However, some patients feel that it is worth taking the time to look at other options before starting treatment. You can search for another specialist on our find a specialist webpage.
Bowel Cancer Australia is here to support you at every step.
We provide essential support services, uniquely designed for bowel cancer patients and their families, via our confidential Helpline with telephone, email and video support as well as a national peer-to-peer buddy support network.
An unrivalled range of information booklets and factsheets underpins our services.
You can call our free Helpline Monday - Friday on 1800 555 494 during business hours.
| Bowel Care Nurses - providing telenursing support nationwide
Bowel Cancer Australia's friendly team of Bowel Care Nurses are at hand to answer bowel cancer questions large and small.
Whether you have symptoms and you don't know what to do; or if you have been diagnosed or have questions about treatment options. Whatever the reason, please don't hesitate to contact one of our friendly, trained Bowel Care Nurses.
Our Bowel Care Nurses understand the needs of bowel cancer patients can be different, adding an extra layer of support to the trusted relationship patients have with their treating medical team at a very difficult time.
Registered nurses provide information and support to anyone with a question or experience related to bowel cancer.
You can email a Bowel Care Nurse any time for advice.
Alternatively, please call Bowel Cancer Australia's helpline on 1800 555 494 during business hours, Monday to Friday.
| Bowel Care Nutritionists - providing telenutrition support nationwide
A diagnosis of bowel cancer involves some major changes to diet and lifestyle.
Our Bowel Care Nutritionists help with practical advice on food choices during treatment and in recovery.
Offering specific nutritional advice, recipes, menu planning and cooking tips are provided to patients, carers, families and friends.
New high and low fibre recipes are also released online every month.
You can email a Bowel Care Nutritionist any time for advice.
Alternatively, please call Bowel Cancer Australia's helpline on 1800 555 494 during business hours, Monday to Friday.
| Bowel Care Oncology Social Worker - providing telehealth support nationwide
Receiving a bowel cancer diagnosis can be a life altering event causing significant stress and anxiety for yourself and loved ones.
In addition to the implications this can have on your physical health and wellbeing, it can also be distressing and complex to cope with day-to-day, as it affects you (and your family’s) life practically, financially, socially, emotionally and psychologically.
Research shows that interventions focussing on holistic wellbeing have positive short and long-term effects by reducing anxiety and depression and improving quality of life.
Bowel Cancer Australia’s Bowel Care Oncology Social Worker supports patients and their families who have been affected by bowel cancer, by providing holistic specialist psychosocial care at all stages throughout the care continuum - from diagnosis, treatment, recovery and living beyond bowel cancer, to palliative care and bereavement, depending on your circumstances.
With specialist knowledge in cancer oncology, palliative care and therapeutic counselling, our social worker, alongside your treating medical team, can offer telehealth support that addresses your psychosocial needs and those of your loved ones.
You can email our Bowel Cacer Oncology Social Worker any time for advice.
Alternatively, please call Bowel Cancer Australia's helpline on 1800 555 494 during business hours, Monday to Friday.
| The Movement - Wellness Beyond Diagnosis
The Movement - Wellness Beyond Diagnosis is Bowel Cancer Australia's closed Facebook Group.
The Movement aims to assist you and your loved ones access quality information and support to help improve health and wellbeing throughout the care continuum.
The Movement is built through online connections with others and is facilitated by Bowel Care Nurses Australia and importantly people with lived experience.
Whether you are newly diagnosed, in active treatment, undergoing surveillance following treatment or for genetic syndrome prevention, or in remission, we hope you will find helpful resources and a very supportive community.
If this sounds of interest to you, click here to join The Movement.
| Peer-to-Peer Support Network
Bowel Cancer Australia’s Peer-to-Peer Support Network is a voluntary community of people affected by bowel cancer, whether personally or via a family member.
It is Australia’s only national support group for bowel cancer patients, newly diagnosed, living with or beyond bowel cancer, and their loved ones. Including young families and partners, women diagnosed during pregnancy, siblings and parents with children that have been diagnosed with young-onset bowel cancer.
Through the support network, we aim to put people in touch with each other - matching them by age, gender, region and their stage of bowel cancer and treatment pathway.
Partners, relatives and friends of patients also benefit from this service as we are able to put them in touch with other people who have a loved one with bowel cancer.
It is Australia’s only national support group for bowel cancer patients, newly diagnosed, living with or beyond bowel cancer, and their loved ones. Including young families and partners, women diagnosed during pregnancy, siblings and parents with children that have been diagnosed with young-onset bowel cancer.
Through the support network, we aim to put people in touch with each other - matching them by age, gender, region and their stage of bowel cancer and treatment pathway.
Partners, relatives and friends of patients also benefit from this service as we are able to put them in touch with other people who have a loved one with bowel cancer.
| The Bottom Line Podcast
Bowel Cancer Australia’s award winning podcast hosted by bowel cancer survivor, Stephanie Bansemer-Brown, is a monthly chat sharing stories and lived-experiences. Hearing from those living with or beyond bowel cancer, as well as health professionals involved in bowel cancer treatment and care, can be a valuable resource that can encourage and inspire others.
Please note, podcasts may occasionally contain content that some listeners may find distressing.
Click here to listen to the latest episode.
| Awareness & patient resources
There is no shortage of information on bowel cancer but when it comes to credible information, that’s a different case.
Bowel Cancer Australia has developed a suite of publications covering all aspects of bowel cancer: prevention, early detection, diagnosis, surgery, treatment and care. Including resources uniquely designed for younger people.
Our resources are designed to increase understanding of bowel cancer, treatment (including managing side effects), and how to adjust to the 'new' normal for people living with and beyond bowel cancer.
Please check out our online shop to explore the range of free downloable awareness and patient resources.
Bowel Cancer Australia has developed a suite of publications covering all aspects of bowel cancer: prevention, early detection, diagnosis, surgery, treatment and care. Including resources uniquely designed for younger people.
Our resources are designed to increase understanding of bowel cancer, treatment (including managing side effects), and how to adjust to the 'new' normal for people living with and beyond bowel cancer.
Please check out our online shop to explore the range of free downloable awareness and patient resources.
| Bowel cancer stories
Many young patients and loved ones choose to share their stories to help raise awareness that you’re never too young to have bowel cancer and to provide support to others.
Often people can find it helpful to read about the experiences of others who have been affected by bowel cancer.
Stories highlight personal bowel cancer experiences, raise awareness of the signs and symptoms and can encourage and inspire others.
Stories are also a valuable resource for other patients and loved ones, who often find it helpful to read about personal experiences of others who are living with or have been affected by bowel cancer.
Check out patient and loved one bowel cancer stories here.
Often people can find it helpful to read about the experiences of others who have been affected by bowel cancer.
Stories highlight personal bowel cancer experiences, raise awareness of the signs and symptoms and can encourage and inspire others.
Stories are also a valuable resource for other patients and loved ones, who often find it helpful to read about personal experiences of others who are living with or have been affected by bowel cancer.
Check out patient and loved one bowel cancer stories here.
| Never2Young
Bowel Cancer Australia’s N2Y initiative was created to provide bowel cancer resources uniquely designed for younger people.
Offering practical and emotional support for the growing number of young people affected by bowel cancer (and their loved ones), championing what matters most to people living with or beyond young-onset bowel cancer, while challenging perceptions through dynamic campaigning that raises awareness and motivates action in all young Australians.
A highlight of the initiative is a dedicated Never Too Young Awareness Week that highlights the unique challenges faced by people who are living with or beyond young-onset bowel cancer.
For further details and to get involved head to nevertooyoung.org.au.
Offering practical and emotional support for the growing number of young people affected by bowel cancer (and their loved ones), championing what matters most to people living with or beyond young-onset bowel cancer, while challenging perceptions through dynamic campaigning that raises awareness and motivates action in all young Australians.
A highlight of the initiative is a dedicated Never Too Young Awareness Week that highlights the unique challenges faced by people who are living with or beyond young-onset bowel cancer.
For further details and to get involved head to nevertooyoung.org.au.
| Recipes
There are very strong links between diet and bowel cancer, and one of the most important changes following treatment for bowel cancer will be to establish good eating and drinking habits that are both healthy and interesting to help you (and your family) stick to the new routine – as well as minimising problems associated with foods that can be difficult to digest with a surgically shortened bowel.
Check out our range of high and low fibre recipes - prepared by our very own Bowel Care Nutritionist.
