A bowel cancer diagnosis, or being told by your doctor that you may have bowel cancer, can come as quite a shock.

It is a time when you need to ask lots of important questions of your doctor and/or specialist.  You will have many thoughts running through your head and may find it difficult to think clearly.

Below is a list of helpful questions you may like to ask your doctor and/or treating specialist.

Bowel Cancer Austraila's What I need to Ask questions are categorised according to the different circumstances in which you may find yourself, as well as the type of treatment sought.

Regular communication with your specialist is vital in helping you make informed decisions about your health care.

Whether you are dealing with a suspicion, diagnosis, or coping with the side effects of treatment, it is important to know what questions to ask your specialist so as to best equip yourself in the prevention, management and treatment of the disease.

The more information you have about bowel cancer, the easier it will be to make informed decisions.

1. What I need to Ask: Screening for Bowel Cancer

Screening for bowel cancer using an immunochemical faecal occult blood test (iFOBT) is recommended every
1 to 2 years for people aged 50 and over who do not have any obvious symptoms or a personal/family history of the disease.

It is very important that negative tests are repeated every 1 to 2 years and positive tests are followed by colonoscopy.

However, you should never be told you are too young to have bowel cancer as it is increasingly affecting all age groups.

People under 50 years of age can also participate in bowel cancer screening - through the BowelScreen Australia® Program - by visiting a participating community pharmacy.

However, if you develop any symptoms, see your doctor immediately.

Since everyone has a unique medical and family history, it is important to talk with your doctor about your personal risk factors and/or experience with bowel cancer.

Below is a list of questions to ask your doctor about screening for bowel cancer.  Mark the questions you would like answered and take them with you to your next appointment.
 


Questions to ask your doctor about bowel cancer screening

  • Based on my personal and family history, do I have any of the risk factors that would make me likely to develop bowel cancer? 
  • Are my children or other relatives at higher risk for bowel cancer?
  • If I have any of the risk factors, are there any changes I can make to reduce the risk? 
  • What are the signs and symptoms that I should be aware of?
  • Should I have any of the tests that would screen me for bowel cancer? 
  • If so, what screening test(s) do you recommend for me?
  • How do I prepare for these tests?  Do I need to change my diet, lifestyle or my usual medication schedule? 
  • What is involved in the test?  Will it be uncomfortable or painful?  Is there any risk involved? 
  • When and from whom will I obtain my results?
  • If I am to have a colonoscopy who will do the examination? 
  • Will I require someone with me on the day of the examination?
  • How often will I be requiring a colonoscopy?

 


 

2. What I need to Ask: Suspicion of Bowel Cancer

If your doctor suspects that you may have bowel cancer, the following list of questions may assist in the discussion that takes place between you and your doctor when addressing the suspicion and subsequent course of action.
 


Questions to ask your doctor about suspicion of bowel cancer

  • What makes you suspect that I have bowel cancer? 
  • What other medical conditions might be causing my symptoms?
  • What are the common risk factors for bowel cancer?
  • Am I at increased risk for the disease?  Why or why not?
  • What types of examinations and diagnostic tests are performed to diagnose bowel cancer?
  • Do I have to make the appointment myself?
  • What do these tests involve?
  • What are the costs involved?
  • How should I prepare for these bowel cancer tests?  Instructions?
  • Will I be able to drive myself home after my test(s) or will I require someone to drive me?
  • Will I require any special assistance at home after undergoing these diagnostic procedures?
  • Should I call for my test results or will someone contact me?  Date to call?  Number to call?

 


 

3. What I need to Ask: A Diagnosis of Bowel Cancer

If you have been diagnosed with bowel cancer, it is not surprising that you would have plenty of questions before you start treatment.

Being well-informed will help you know what to expect at each stage of your journey.

Being treated for bowel cancer often means that you may have more than one specialist. Your relationship with your treating specialist and the other members of your multidisciplinary team constitute a key part of your care.

It is usually best to have one specialist who coordinates all of your care. This specialist should be someone you feel comfortable with, someone who listens to your concerns and answers all of your questions. Your specialist will explain your diagnosis, health status, treatment options and progress throughout therapy.

There will also be nurses working with your specialist who have expert training to care for people with bowel cancer.  They are there to assist you with your treatment or any side-effects you may experience. In many cases, the nurses can answer your questions as well.  Nurses will also assist in helping you get the answers you require from other members of your multidisciplinary team.

Like all successful relationships, your relationship with your specialist is a two-way street.  It is your responsibility to ask questions and learn about your treatment and health and to play an active role in your health care - it is your life, your illness and your body.

A list of useful diagnosis questions has been prepared according to the type of treatment as well as other concerns you may wish to have addressed during your discussions with your specialist, so you are fully prepared.  If possible, bring a partner, friend or relative with you.  They can take notes from your conversations, help you remember relevant information and think of additional questions to ask.

You may not need to ask all of these questions. Ask whatever you feel is important to get the information you need right now. You may wish to add other questions that are important for you personally to your list as well.
 


Questions to ask your specialist upon receiving a diagnosis of bowel cancer

The following list of questions can be asked of the specialist who is diagnosing or has diagnosed your bowel cancer.  

  • What type of bowel cancer do I have?
  • Where exactly is the cancer located in the bowel?
  • Are you able to tell me if my cancer has spread beyond my bowel?
  • Are you able to tell me the stage of my cancer?
  • If not, what are the tests that I will require to determine what stage my cancer is in?
  • Are there other tests that need to be done before we can decide on treatment?
  • Are you able to tell me how quickly the cancer is likely to grow?
  • Will it make a difference if I were to change my diet?
  • Does my diagnosis mean that my blood relatives are at higher risk for bowel cancer?  Should they talk to their doctors about screening?
  • What are my treatment options based on my diagnosis?
  • What treatment option do you recommend?  Why?
  • What is my prognosis based on type and possible stage of bowel cancer?
  • What other specialists will I be required to see for the treatment of my disease?  Should I see a surgeon?  Medical oncologist?  Radiation oncologist?  Should these specialists be involved in planning my treatment before we begin?
  • What specialists do you recommend?
  • How do I contact the members of my multidisciplinary team? Numbers to call?
  • Am I a candidate for surgical removal of the bowel tumour?  If so, what type of surgical procedure do you recommend?
  • If so, should I have surgery by a certain date?
  • How long can I safely delay surgery while trying to decide upon a course of treatment and specialist referrals?
  • Should I obtain a second medical opinion before beginning cancer treatment?  Why or why not?

 


Questions to ask your specialist regarding additional testing

If your diagnosis was delivered by the specialist who performed your colonoscopy (gastroenterologist), they may wish to pursue additional testing to either properly stage the cancer or determine the full extent of the disease resulting from disease metastasis (spread of the disease). This additional information is critical in helping to decide on a treatment plan.

  • What other tests are you recommending for the assessment of my disease?
  • What extra information will you glean from each of these tests?
  • How soon will I receive the results of these tests?
  • What does each of these tests involve?  How should I prepare for them?
  • How long will the tests take?
  • Will I be able to drive myself home immediately following the tests?
  • Are there any side effects or complications associated with any of the diagnostic tests?
  • If any one of the tests detects an abnormality, what will be the course of action?  Will abnormal tissue be removed during the procedure?
  • Aside from the standard imaging available such as a CT scan and MRI, would I benefit in accessing a PET/CT for the detection of my disease elsewhere in the body?  Why or why not?
  • If so, how would I access a PET/CT?
  • Are PET/CTs funded by Medicare for the detection of bowel cancer?
  • If not, how much would I be required to pay in order to access one?
  • Where can I access a PET/CT?
  • Will you provide a referral for the administration of a PET/CT?

 


General questions to ask your specialist about treatment 

The following list of general treatment-related questions has been compiled if you wish to explore and engage in a discussion regarding your treatment options after diagnosis. A more extensive and specific list of questions are provided according to the type of treatment recommended.  Identify those questions pertinent to you and ensure that your questions and any concerns you have are properly addressed before commencing treatment. 

  • Is there a cure for my condition?  What is my prognosis, as you see it?
  • How does my past medical history affect treatment options available to me?
  • Based on the stage of my disease, what is your recommended treatment option?
  • What is the goal of treatment?
  • How long will I have to undergo the treatment?
  • What are the names of the drugs I require and what are they for?
  • How long does each course of the treatment take?
  • What are the potential benefits and drawbacks of this treatment?
  • What are the common side effects of the recommended treatment?
  • What should I do if I experience severe side effects?  Telephone number to call?
  • What can I do to safeguard against the onset of side effects?
  • How will you know that my treatment is working?
  • How can I expect to feel during treatment?
  • How long should it take the treatment to work?
  • What happens if I miss a treatment?
  • How will my condition be monitored after my cancer treatment?
  • Can I work during treatment if I wish to do so?
  • What other types of bowel cancer treatments are available?
  • What are the benefits, disadvantages, and possible complications of chemotherapy, radiation therapy and biological therapy for bowel cancer?
  • What do these bowel cancer treatments involve?
  • How often should I be seen for follow up appointments?
  • Why do I need blood tests and how often will I need them?
  • Is combination chemotherapy a treatment option that is appropriate for me?
  • If I decide to receive combination chemotherapy, what is my chance of remaining disease-free?
  • If I decide not to receive combination chemotherapy, what is my chance of remaining disease-free?
  • What will the treatment schedule look like in terms of how many days I will need to come into the clinic, how long I will have to stay each day, and how many days after a treatment I might need to take off work or limit other plans?
  • Are there any “high-risk” features of my tumour that make it more important for me to consider combination chemotherapy?
  • Is the recommended therapy covered under Medicare?  If not, will my private health care fund cover the therapy?
  • If I do not have private health care cover, what are my options?
  • Which hospital would be able to provide the best treatment for my cancer?
  • When should I start treatment?
  • Will I need to spend time in hospital?  If so, for how long?
  • If I have treatment, could my cancer return?
  • For each possible treatment option, what are the chances that my cancer might come back?
  • If the cancer comes back, can it again be treated successfully?  If so, what treatments are available to me in the event of a recurrence?
  • For Stages I (ACPS/Dukes' A), II (ACPS/Dukes' B), and III (ACPS/Dukes' C):  Should I have additional treatment, even if the cancer is removed by surgery?
  • Stage III (ACPS/Dukes' C)/Recurrent/Relapsed:  Will the results of the treatment be worth the side effects I may suffer?
  • Can I choose a less aggressive treatment so as to keep me comfortable?
  • What will happen if I refuse further treatment?
  • What happens if I react badly to treatment and need to stop?  Will we try something else instead?
  • What possible long-term effects might occur as a result of the treatment?
  • Once I finish treatment, how will I be monitored for recurrent cancer?
  • What follow-up tests will be done and at what intervals?
  • Do you regularly measure CEA (carcinoembryonic antigen) levels?  If so, how often?  What will you do if this level increases?
  • If other specialists take part in my care, who will coordinate my entire treatment program?
  • If I don’t feel ill, does this mean the treatment is not working?
  • Are there any steps I should take during or after treatment to help myself stay healthy?
  • Are there any alternative or complementary therapies that I should consider?
  • Does my bowel cancer diagnosis mean I am at higher risk for any other type of cancer?
  • Is a clinical trial appropriate for my situation?  Why or why not?  Would I receive better medications?
  • What types of experimental bowel cancer treatments are being developed?
  • Can you recommend a local or online support group for people who have bowel cancer and for their families?
  • For younger patients:  Will the treatments affect my ability to have children?  Is there a way to protect my fertility?
  • What is the best time to call you if I have a question?  Number to call?

 


 

4. What I need to Ask: Securing a Second Opinion

Cancer treatment can be quite complex.  Not surprisingly, some patients may not know where to start asking questions and, naturally, may wonder if another specialist might offer something different in the way of treatment.

Patients may find themselves wanting to talk with another doctor who can look at their test results, talk to them about their personal situation, and perhaps give them a different take on their case.

Some patients may find it difficult to tell their doctors that they would like to seek out a second opinion.

Knowing that it is quite common for patients to seek out a second opinion may help in the pursuit of that second opinion. Most doctors are comfortable with the request.

If you are uncertain as to how to begin, the following list of questions may aid in addressing the subject with your doctor/specialist.
 


Questions to ask about securing a second opinion

  • Before we start treatment, I would like to get a second opinion.  Will you assist me with that?
  • If you had my type of cancer, who would you see for a second opinion?
  • I think I would like to speak to another specialist to be sure I have all my bases covered.
  • I’m thinking of seeking out a second opinion.  Can you recommend someone?  If so, who would you recommend, and why?

 


Securing a second opinion can be facilitated through a referral from your specialist or you may wish to seek out a second opinion on your own and then have your family doctor/GP forward the referral.

Once you have decided who you will see for your second opinion, ask that your medical records, original x-rays and all test results be shared with the new specialist.  This avoids having to repeat everything all over again.  Having taken copies of all your test results throughout the process may facilitate the sharing of those results with your new specialist.
 

5. What I need to Ask: Surgery

For patients with potentially curable bowel cancer, a properly performed surgical operation is essential for optimal results.  In the majority of such cases, operative intervention involves a resection (removal) of the primary cancer and regional lymph nodes, along with the removal of sections of normal bowel on both sides of the cancer when treating colon cancer, and the removal of the mesorectum (the tissue attached to and supporting the rectum) when treating rectal cancer.

There are several different types of surgical procedures used in the treatment and management of bowel cancer.  The size and spread of the cancer, as well as the experience of the surgeon determine the appropriate procedure.

The following list of questions is meant as a guide to the issues you should discuss with your surgeon and medical team before undergoing surgical treatment of bowel cancer.
 


Questions to ask your surgeon before surgery

  • Are you a general surgeon or specialist colorectal surgeon?
  • Do you have a specialty in surgical oncology?
  • What is the stage of my cancer?
  • Is surgery the standard treatment for my stage of disease?
  • Why do you recommend surgery for my colon/rectal cancer?
  • What type of surgery do you recommend (conventional vs. laparoscopic)?
  • Can you describe the surgery that you recommend?
  • What is the goal of surgery?
  • What are you planning to remove during surgery (the bowel, nearby bowel tissue, rectum, mesorectum, lymph nodes)?
  • How many times have you performed the recommended surgery?
  • Will you personally be performing the surgery?
  • What is your success rate and how do you define success?
  • What is your experience with complications?  What should I do if I develop complications after surgery?  Telephone number to call?
  • Is a biopsy part of the surgery?
  • How soon after surgery will I have all test results and a firm diagnosis?
  • Will I need blood transfusions and can my family donate blood?
  • Why is bowel preparation necessary for abdominal surgery?
  • Will I have a catheter to drain my bladder and, if so, how long will it be in?
  • Will you perform a pelvic lymph node dissection?
  • I have read that at least 12 lymph nodes need to be examined to accurately stage bowel and rectal cancers.  Do you routinely accomplish this?  Can more than 12 lymph nodes be examined?  If so, how many are you willing to examine in excess of 12?
  • What happens if one or more of the lymph nodes is found to be positive?
  • Do you use drains and how will you decide?
  • How long will I be unable to eat?
  • Will I have a nasogastric tube (NG tube) after surgery?
  • What are my options for pain control after surgery?
  • Do you think I will require a temporary or permanent colostomy?  If so, what will this involve?
  • If you find that the disease is more extensive than originally believed, what will you do?
  • Considering my age and general health, am I at a higher or lower risk for complications?
  • What might my recovery involve?  Restrictions?  Date to resume normal activities?  What realistic time period should I be expecting to take off from my work commitments?
  • What are my options besides surgery?
  • Are there clinical trials for my stage of disease?
  • Will I require adjuvant (post-surgical) therapy after my surgery?
  • Are there any protocols for neo-adjuvant (before surgery) therapy for my stage of disease?
  • What are the pros and cons of each type of bowel/rectal surgery for the treatment of my particular cancer?
  • What diagnostic tests are needed prior to surgery and how will these assist in surgical planning?
  • Do you feel it is appropriate to perform surgery even if there are metastases present in more than one place?  If yes, under which conditions?
  • Who will give me information about how I should get ready for surgery and a hospital stay?  How long will I be in the hospital?
  • Might I require special assistance at home after the procedure?  If so, how can I arrange for the help I need?
  • For rectal cancer:  Should I have radiation therapy and chemotherapy before my rectal cancer surgery?

 


Questions to ask your surgeon after surgery

  • What is my official diagnosis based on the results of surgery and biopsy reports?
  • Can you explain my pathology report (laboratory test results) to me?
  • What is my prognosis?
  • What additional treatment do you recommend?  Why?
  • What is the goal of this treatment?
  • Is it a standard treatment or part of a clinical trial?
  • What are the risks and possible side effects of treatment, both in the short term and the long term?
  • How will the treatment affect my daily life?  Will I be able to work, exercise, engage in sexual activity and perform my usual daily activities?
  • How long will it be before I can go back to work after surgery?  Can I work during chemotherapy?
  • What follow-up tests will I need and how often will I need them?  When will I be seen for a follow-up examination?
  • What support services are available to me?  To my family?

 


Questions to ask about surgery-related side effects

  • What should I expect as far as side effects are concerned?
  • How long will they last?
  • Which side effects should I report?  To whom should I report the side effects?
  • What kind of impact will this surgery have on my bladder and bowels?
  • Will the surgery damage nerves to sexual organs?
  • How will my sexual relations be affected and when can I resume sexual intercourse?
  • What kind of pain relief will I have?
  • If I have a lymph node dissection, will this cause me to be at risk for lymphedema (a condition that occurs when lymph nodes have been removed or damaged and lymphatic fluid collects in those tissues, causing swelling or oedema in the legs)?  And if so, what steps can I take to avoid it?

 


 

6. What I need to Ask: Colostomy

Patients who have had surgical treatment for their colon or rectal cancer may require a colostomy.

Colostomy is a surgical procedure that brings the end of the large intestine through the abdominal wall.  Stools moving through the intestine drain into a bag attached to the abdomen.

Colostomy is done while you are under general anaesthesia. It may be done with invasive, open surgery or several small surgical cuts (laparoscopically).  For the colostomy, the end of the healthy colon is brought through the abdominal wall.  The edges are stitched to the skin of the abdominal wall.  A bag called a stoma appliance is secured around the opening to allow stool to drain.

Your colostomy may be short-term.  If you have surgery on part of your large intestine, a colostomy will allow the remainder of your intestine to rest while you recover.  Once your body has fully recovered from the initial surgery, you will have another surgery to reattach the ends of the large intestine.

An ileostomy is an opening in the abdominal wall that is made during surgery.  The word ‘ileostomy’ comes from the words 'ileum' and 'stoma'.  Your ileum is the lowest part of your small intestine.  Stoma means 'opening'.  Your ileum will pass through a stoma after surgery.  Ileostomies are used to deliver waste out of the body when the colon or rectum are not working properly.

In the event that a colostomy is required, the following list of questions may assist in your discussion with your specialist, who is usually a colorectal surgeon.
 


Questions to ask your specialist regarding colostomy 

  • Will I require a colostomy?
  • If I have a colostomy, will it be temporary or permanent?
  • If I have a temporary colostomy, when will I have additional surgery to have the stoma removed?
  • Will I be assigned a colostomy nurse to provide detailed information, answer questions and help me learn to manage it after the surgery?
  • What type of colostomy will I have?  (Colostomy vs. Ileostomy)
  • Will I be required to change my diet?
  • How will the colostomy be placed to minimise discomfort and inconvenience?
  • Where will I order and receive the stoma bags from?
  • How much do the stoma bags cost?
  • How often will I have to change the bag?
  • Can I swim with a stoma bag?
  • Can I scuba dive with a stoma bag?
  • Can I be sexually active with a colostomy?
  • Can I still exercise with a colostomy?
  • What is a good ointment to use to minimise any irritation to the stoma site?

 


 

7. What I need to Ask: Chemotherapy & Monoclonal Antibodies

Some patients with bowel cancer will already have small amounts of cancer that have spread outside the colon or rectum and cannot therefore be removed by surgery.

Undetectable areas of cancer outside the bowel are referred to micrometastases and cannot be detected with any of the currently available tests. The presence of micrometastases causes relapses that occur after treatment with surgery alone.

Surgery is only one component in the treatment of bowel cancer and is often followed by adjuvant chemotherapy (chemotherapy administered after surgery) to cleanse the body of micrometastases.

Other patients may have macrometastases (areas of cancer outside the bowel that are detectable by imagery) discovered synchronously (at the same time) with their primary tumour.  These patients are considered Stage IV (ACPS/Dukes’ D) and surgical removal of the primary may not be an option.

Instead, proceeding directly to systemic therapy (the administration of drugs intravenously (or orally) for the treatment of the cancer throughout the body) may be in the best interest of the patient.

Whether you are a Stage IV (ACPS/Dukes’ D) patient or a patient accessing adjuvant therapy, the prospect of having to endure multiple cycles of chemotherapy can be daunting to even the most resilient of patients.  If, however, you are prepared and well informed about the drugs administered, the experience can be less frightening and more therapeutic.

In addition to the set of treatment-related questions appearing above (see What I need to Ask: A Diagnosis of Bowel Cancer), a more condensed and concise list of chemotherapy-related questions can be found below to assist you when engaging in a conversation with your specialist (who is usually a medical oncologist) about the administration of chemotherapy and monoclonal antibodies.

Feel free to add or delete questions to the following list.
 


Questions to ask regarding chemotherapy and monoclonal antibodies

  • What can I expect from my therapy?
  • What are the names of the drugs that will be used in my treatment?  (5FU, FOLFOX, FOLFIRI, FOLFOXIRI, XELOX, Oxaliplatin, Irinotecan, or Capecitabine)
  • Is there evidence that they are more effective than other chemotherapy drugs?
  • How many treatments will I need?
  • How will the treatments be given?
  • Will I be able to go home afterwards?
  • What will I feel like after my treatments?
  • Will I be able to work?
  • Will I be able to take care of my spouse and children?
  • Will I be able to drive my car?
  • What are the possible side effects of these treatments and how long do they last?
  • Will my hair fall out?
  • Will I be nauseous?  If so, how can that be treated?
  • Will I be fatigued?  How will you address that?
  • Will I get mouth sores?  If so, how will that be addressed?
  • Is there anything I can do to lessen the side effects?
  • If I am taking chemotherapy, can I eat all kinds of foods?
  • Can I drink alcohol?
  • Can the cancer spread, even though I am on chemotherapy?
  • Will chemotherapy affect my sex life?
  • Will chemotherapy affect my fertility?
  • Can I take chemotherapy if I am pregnant?
  • How will I know if the treatment is working?
  • What are the chances for remission or for a longer life?
  • Will I be able to take multi-vitamins or anti-oxidant therapy during chemotherapy?
  • Do I qualify for biological therapy (a monoclonal antibody) in conjunction with chemotherapy?
  • If so, which do you recommend? (Avastin, Erbitux or Vectibix)
  • If Oxaliplatin is recommended, will I be accessing magnesium/calcium infusions before and after Oxaliplatin infusion?

 


Questions to ask about chemotherapy-related side effects  

  • Is there any way I can anticipate what my chemotherapy side effects will be?
  • How long will the side effects last?
  • Which side effects should I report and to whom?
  • What happens if my side effects prevent me from taking my medications?
  • What can I do to help prevent the fatigue I may experience?
  • Will I lose my hair as a result of my chemotherapy?
  • What will happen if my white blood cell count dips too low (known as leucopenia) compromising my ability to fight infections?  Can we safeguard against this?  Are there drugs to address this?
  • Can I take multi-vitamins to address or prevent some of the chemo-induced side effects?
  • What can I do to prevent the tingling and numbness (neuropathy) that result in the fingers and feet after Oxaliplatin therapy?
  • Will I have magnesium and calcium infusions in the clinic to safeguard against the onset of Oxaliplatin-induced neuropathy?  If not, can I take magnesium/calcium supplements?
  • Will I lose my appetite?  How can we remedy this?
  • Will the side effects affect my bowel movements?  Can this be remedied?
  • Will I experience nausea/vomiting from the side effects?  If so, how can this be prevented or treated?
  • Will I experience mouth sores (mucositis)?  If so, how can I safeguard against its onset?  Can it be treated?
  • Do monoclonal antibodies such as Avastin, Erbitux and Vectibix have any side effects?  If so, what are they and how can I either safeguard against their onset or have them treated?
  • Can I safeguard against the onset of Erbitux/Vectibix-induced skin rash?  If already developed, can it be treated?

 


 

8. What I need to Ask: Radiotherapy

Radiation therapy, also called radiotherapy, is often used in conjunction with surgery and chemotherapy to treat cancers of the rectum and colon.

The primary treatment for bowel cancer is surgery.  However, your doctor may also recommend radiation therapy and/or chemotherapy depending on the location and stage of the cancer.

For some rectal cancers, radiation therapy is given with chemotherapy to make the tumour smaller so it can be removed more easily during surgery.  Other times, radiation is given at surgery to keep the cancer from returning.

Radiation therapy is the careful use of radiation to treat cancer safely and effectively.  Radiation oncologists use radiation therapy to try to cure cancer, control cancer growth or relieve symptoms, such as pain.

Radiation therapy works within cancer cells by damaging their ability to multiply.  When these cells die, the body naturally eliminates them.  Healthy cells are also affected by radiation, but they can repair themselves in ways cancer cells cannot.

The following list of questions may assist you with your discussions with your radiation oncologist should you be a candidate for radiotherapy.
 


Questions to ask before radiotherapy

  • What type and stage of bowel cancer do I have?
  • What is the purpose of radiation treatment for my type of bowel cancer?
  • What areas of my body will be treated with radiation?
  • How will the radiation therapy be given?  Will it be external beam or brachytherapy (the placement of radioactive sources in or just next to a tumour)?  What do the treatments feel like?
  • Can you explain the terms 3D-CRT (3 dimensional conformal radiation therapy), IMRT (intensity modulated radiation therapy), IGRT (image guided radiation therapy) and indicate which of these technical terms would apply to me?
  • Can you explain the term SIRT (Selective Internal Radiation Therapy) and indicate if this treatment option is available to me?
  • If so, can SIRT be given in conjunction with chemotherapy?
  • For how many weeks will I receive radiation?  How many treatments will I receive per week?
  • What are the chances that radiation therapy will work?
  • Can I participate in a clinical trial?  If so, what is the trial testing?  What are my benefits and risks?
  • What is the chance that the cancer will spread or come back if I do not have radiation therapy?
  • How will I feel after the treatments?
  • Will I be able to work?
  • Will I be able to take care of my spouse and children?
  • Will I be able to drive my car?
  • What are the side effects of radiation?
  • Is there anything I can do to lessen the side effects?
  • Can I eat or drink anything I want during the weeks I have radiation?
  • Can I drink alcohol?
  • Will I need chemotherapy, surgery, or any other treatments in conjunction with radiotherapy?  If so, in what order will I receive these treatments?
  • How soon after radiation therapy can I start receiving other treatments?  Can I receive several treatments at the same time?
  • What are some of the support groups I can turn to during treatment?
  • If I have questions after I leave here, who can I call?  Telephone numbers to call?
  • Will radiation therapy affect my ability to have children?
  • What is the cost of radiotherapy?  Is it covered by Medicare?

 


Questions to ask during radiotherapy

  • How can I expect to feel during treatment and in the weeks following radiation therapy?
  • Can I drive myself to and from the treatment facility?
  • Will I be able to continue my normal activities?
  • What side effects may occur from the radiation and how are they managed?
  • Do I need a special diet during or after my treatment?
  • Can I exercise?
  • Can I engage in sexual activity?
  • Can I drink alcohol?
  • Will side effects change my appearance?  If so, will the changes be permanent or temporary?  If temporary, how long will they last?
  • Is it safe to take vitamins during treatment?
  • Who should I call and what are the reasons that I should call at night or on a weekend if necessary?

 


Questions to ask after radiotherapy  

  • How and when will you know if I am cured of cancer?
  • What are the reasons that I should call you after my treatment ends?
  • What are the chances that the cancer will come back?
  • How soon can I go back to my regular activities?  Work?  Sexual activity?  Aerobic exercise?
  • How often do I need to return for check-ups?
  • Are there any additional side effects I should look for?  How should I manage them?

 


Questions to ask about radiotherapy-related side effects

  • Is there any way I can anticipate what my radiation therapy side effects will be?
  • Will the side effects be debilitating?
  • Will I be able to take multi-vitamins during radiotherapy?
  • How will the side effects affect my bowel movements?
  • Will I experience any pain?
  • Will I experience any nausea/vomiting?
  • Can we safeguard against the onset of the nausea/vomiting?
  • Will I lose my appetite?  How can this be remedied?
  • Will I experience any skin irritations?  Will they be permanent or temporary?  If temporary, for how long?
  • Can I control the side effects with any medications?
  • Can I control the side effects with a change in my diet?
  • How should I care for the skin that is exposed to radiation?  May I bathe?

 


 

9. What I need to Ask: Lifestyle changes

When diagnosed with bowel cancer, changes in lifestyle habits can aid in the management of treatment of the disease.

The following list of questions addresses the lifestyle factors during and after bowel cancer treatment.
 


Lifestyle-related questions 

  • Will my life change?  If so, how?  Will I need to make changes in my work, family life, and leisure time?
  • Can I drink alcoholic beverages?
  • Are there any special foods that I should or should not eat?
  • What lifestyle restrictions will I have during treatment?  For example, can I exercise the way I always have?
  • Will I have to limit visits with family and friends?
  • How will my normal activities change as a result of treatment?
  • Can I still lift things as normal?
  • Can you recommend support groups in the local area with people I can talk to?
  • Will my sexual function be affected?
  • I have never exercised before, should I be taking part in an exercise program?
  • Should I take any over the counter medications (e.g. Antacids, aspirin) during treatment?
  • Should I be taking multivitamins during and after treatment?
  • What types of lifestyle and dietary changes may be helpful to manage my condition during and after treatment so as to improve my prognosis?
  • Should I schedule appointments with a nutritionist, dietician, or other health care specialists?
  • How will I cope if I live alone?
  • Will I have any physical problems?
  • Is there written information I can take home with me or access on lifestyle changes?
  • What happens if I experience depression or constant sadness?
  • Who can help me relay the news to my children about my bowel cancer diagnosis?

 


 

10. What I need to Ask: Securing Information That You Will Require Later

At some point – even if you do not change specialists before or during treatment – you may find yourself in the office of a new specialist involved in the treatment or management of your disease.

It is important that you be able to give your new specialist the exact details of your diagnosis and treatment. The following checklist will aid in the sharing of your information with the new specialist and it is recommended that you always keep copies for yourself.
 


  • A copy of the pathology report from any biopsy or surgery
  • If you have had surgery, a copy of the surgical report
  • If you have been admitted to hospital, a copy of the discharge summary that every doctor must prepare when patients are sent home
  • If you have had radiation therapy, a final summary of the dose and field
  • Since some drugs can have long terms side effects, a list of all your drugs, drug doses, and when you took them (including over-the-counter drugs) 

 


You may ask your doctor’s/specialist’s office staff for copies of your records.  Kindly bear in mind that they may relocate, depart on vacation, or close their offices due to holidays.  Hence, asking for your records as soon as they are generated is advisable.

If the treatment or test took place in a hospital, you may need to contact the hospital’s medical records department to determine how to go about securing your records.  This information should be kept with you for life, since all future doctor/specialist visits will be requiring the information.

Remember that you have the right to a second opinion about your diagnosis and the recommended treatment plan. Asking for a second opinion does not imply that you do not like or trust your doctor/specialist.

Your doctor/specialist understands you need to feel that every possibility for the best treatment has been explored.  You may also ask your doctor/specialist if they have consulted with their colleagues for additional recommendations in respect of your disease. 


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Determining which type of treatment is right for your bowel cancer is important.  Asking your specialist about surgical procedures, associated treatment side effects and potential risks are critical to making informed decisions about the disease.

Exploring the emotional and physical side effects of bowel cancer therapies will give you some insight into potential problems before they occur.  Although managing and living with these side effects may indeed be difficult, at least you will be aware and informed should they occur.

Your specialist and the rest of your multidisciplinary team are there to help you and support you through what can be a difficult time.  Patients who have cancer want to build good relationships with their treating specialists.  A good relationship however, doesn’t just happen – it takes care and effort on both sides.

Ensure that all your concerns and questions, no matter how small, have been addressed.  It may require more than one visit to discuss all of your concerns and new questions may arise at a later time.  It may be difficult to remember everything your specialist says to you.  This is why most patients find it helpful to do any or all of the following. 



 
  • Bring a family member or friend with you to the appointments.  It helps to have another person hear what is said and to think of additional questions to ask.
  • You or your attendee may take notes during the appointment.
  • Write out your questions or concerns before the appointment so that you will not forget what to ask of the specialist.
  • Either you or your attendee may wish to write down the answers you receive from the specialist and ensure you understand what you are hearing.  Ask for clarification if necessary.
  • Do not be afraid to ask your questions or ask where you can find more information about what you are discussing.  You are most certainly entitled to know.  


 

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Real Life Stories

Brent R's story (32, VIC)

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I’ve seen the effects of bowel cancer first hand and know I never want to go through it. My Dad was diagnosed with bowel cancer in February 2000. He was just 49 years old. He had had some rectal bleeding and back pain so went to the GP who sent him for a colonoscopy. After this plus scans and blood tests, Dad was diagnosed with bowel cancer which had spread to the liver. He had successful surgery to remove the cancer from the bowel but when the surgeons opened him up to remove the tumour from his liver, they discovere...

Eileen's story (50, NSW)

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Russell's story (72, NSW)

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Stacey B's story (36, WA)

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My husband Peter was diagnosed with bowel cancer in June 2012 at age 36. He was referred for a colonoscopy by our GP as he had been experiencing rectal bleeding and a consistent change to his bowel habits. The colonoscopy results found a tumour which was biopsied and confirmed to be cancerous. Peter was then sent for a CT scan and MRI to confirm locations and check for the possibilities of metastasis....

Anis' story (72, NSW)

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This story is about my father who was diagnosed with bowel cancer three days before Christmas in 2010 and passed away just five weeks later.   Dad was a young 72-year-old – he was healthy and active, ate well, enjoyed long walks, wouldn’t hesitate to climb up on the roof if necessary, and had never even been to hospital – so his diagnosis was a shock. He had lost his appetite and begun to lose weight about a month before his diagnosis but his doctor didn’t think it was a problem; in fact, he th...

Peter F's story (41, NSW)

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Lorraine (50, NSW)

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Rachel's story (40, QLD)

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Christine's story (54, QLD)

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Stacey B's story (29, WA)

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Peter's story (62, QLD)

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Karen's story (45, NSW)

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Gayle's story (53, QLD)

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Ian's story (65, QLD)

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Renay's story (41, VIC)

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Eve's story (22, SA)

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Nicole's story (41, VIC)

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Jo's story (45, NSW)

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Mandi's story (29, NSW )

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I was diagnosed with bowel cancer at 24 years old, just before I was due to leave for Europe with a group of girlfriends after finishing university. I had experienced some bleeding from my rectum only one week prior to this time, but at the time I really wasn’t too fussed about getting it looked at because I was so excited about my European adventure, and because of my age....

Monica's story (85, QLD)

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Andrew's story (22, VIC)

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In April 2010, I suffered a huge amount of bleeding when I went to the toilet.  I had no warning signs – it just happened out of the blue.  It was so bad that I went straight to the emergency ward at the hospital.  I think they thought it was just haemorrhoids so I was given a DRE (digital rectal examination) and the doctor took some blood and sent me home. ...

Maureen's story (55, QLD)

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When Maureen received a screening kit in the mail just after her 55th birthday, she had no reservations about doing the test. “It was just too simple not to do. The test was hygienic, quick to complete and extremely straight-forward,” she said. Just as well, because ultimately this unusual birthday present saved her life.  When the test returned a positive result, Maureen was not overly concerned as she had read in the accompanying booklet that the presence of blood may be due to conditions other than ca...

Seher's story (30, NSW)

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My family was shocked by the news in April 2011 when first told my Dad had bowel cancer. It was difficult to process as my Dad is such a healthy man. Initially my Dad went to his GP to have a check up on his prostate. It was after his assessment that the GP was concerned Dad’s bowel may require further investigation. After discussing his health with his doctor it was apparent Dad had experienced a change in his bowel habits, was anaemic and had noticed gradual weight loss....

Cherie's story (24, WA)

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I was diagnosed with bowel cancer at the age of 24. Over the period of a few months, I noticed that the urge to go to the toilet was becoming more frequent but I assumed that was because I was pregnant. The other key symptom was severe pain in my tailbone area. I would later find out that this was where the tumour was, though at the time it was also attributed to pregnancy....

Hollie's story (24, WA)

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Despite experiencing horrible stomach pains and bloating and visiting a few different GPs about my symptoms, I was told I had IBS and female problems. My mother has Crohns so I finally found a GP who would send me for a colonoscopy to test me for this. After being on the waiting list for a while I finally had a colonoscopy in April 2011; however, it had to be abandoned due to the extreme pain I suffered during the procedure. I was scheduled to have another colonoscopy as they had found a polyp during the first procedure. Th...

Mary-Anne's story (49, NT)

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When I was diagnosed with bowel cancer on 23 June 2011, I didn’t even ask what stage the cancer was at – I just wanted to know what I had to do to fight it. My initial symptoms were rectal bleeding, a change of bowel habit and stomach pain. Eighteen months prior, I had started bleeding and had a colonoscopy which showed nothing. The last colonoscopy five years prior to that had showed a polyp and an unknown growth, neither of which were diagnosed as a cancer. There is no family history of bowel cancer on eith...

Felicity's story (38, VIC)

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In August 2010 my life changed forever.  Nothing can prepare you for a bowel cancer diagnosis at just 38 years old.   I had been given what I thought was a routine colonoscopy to investigate the cause of my iron deficiency, which my doctor thought was probably due to an ulcer. But as I lay in bed in the recovery room after being told they had found a tumour, I remember thinking: ‘I’m too young.  I have a husband and two young boys.  This can’t be happening to me’.  ...

Gillian's story (62, VIC)

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I was diagnosed with bowel cancer at 58 years old. I’d had dull stomach pain and occasional bleeding for several months but it wasn’t until I saw a lot of blood in the toilet that I booked an appointment with my GP.  He sent me for a colonoscopy and I was referred to a surgeon within a week. I was very shocked when I was told I had cancer, but I tried to remain positive throughout my treatment and I really think that helped me cope....

Vicki S' story (36, QLD)

1

I was diagnosed with bowel cancer in 1999 at 36 years of age. Twelve months prior to my diagnosis I had visited my GP and raised concerns about weight loss, rectal bleeding, changes in my bowel habit, stomach pain and feeling tired. My GP told me it was stress-related. After numerous visits I felt like I a hypochondriac so I stopped going to the doctor to report the same symptoms and accepted it was stress (even though I didn’t feel it was stress related). I was a single mother with two young children so I told myself...

Ben's story (28, VIC)

1

I was 28 when I was diagnosed with bowel cancer in January 2011. I’d had rectal bleeding, changed bowel habits and stomach pain for a while but had put off investigating the symptoms – I was living in China at the time so I figured it was either an intestinal infection that I couldn't seem to shake or a reaction to something I’d eaten. ...

John S' story (65, NSW)

1

I was diagnosed with stage one bowel cancer at the age of 62. Everything seemed to happen so quickly. I took part in the Rotary Bowelscan program in April and in early June received notification that my test results were positive. I saw my GP on 6 June and she booked a colonoscopy for 7 July. Just four days later I was having an x-ray and CT scan, which revealed a 4cm tumour on my sigmoid colon. By the end of July I had seen a surgeon, who recommended an operation to remove the tumour and outlined my treatment options....

Adam's story (25, NSW)

1

I was diagnosed with stage 3 bowel cancer two years ago at the age of 23.  I had been experiencing a range of symptoms for about five years, including rectal bleeding, mucous in my stools, diarrhoea, stomach pain and cramps to changes in my bowel habits.    Coincidentally, my mother was also having these problems, so we were both seeing a doctor to try to discover their cause....

Amanda's story (37,WA)

1

My mum was in her mid to late 40s when she was diagnosed with bowel cancer. She died at the age of 50, when I was 27, 11 years ago this year. Mum had experienced symptoms for some time, starting with bowel upsets, stomach pain and changes in her bowel habits. The doctors suggested it was gastro, then Irritable Bowel Syndrome - you name it, they suggested it. When I look back it felt as though they were fobbing her off. They never suggested looking into what was causing the problems....

Kym's story (33, VIC)

1

I was diagnosed with bowel cancer in May 2010 at the age of 31. My bowel habits had started to change about two years before, including small amounts of blood on the toilet paper, but I had been told earlier that I had a haemorrhoid so I thought that might explain the bleeding. I was also diagnosed with anaemia just before I fell pregnant about a year after; I would later learn that anaemia can be an indicator of bowel cancer. It wasn’t until two months after giving birth that I went to see my GP about the bleeding,...

Moya's story (69, NSW)

1

In 2007, the government sent out free bowel cancer test kits to a range of people and I did my test as soon as I received it. The results indicated blood in my samples and I was told to see my GP immediately. I wasn't overly worried at this stage because I had seen blood in my stools on and off for some time and had always put this down to taking iron tablets, which can cause dietary problems like constipation.   After my GP appointment, things started to move very quickly, with a colonoscopy, blood tests, i...

Mary's story (43, VIC)

1

Unlike many people, I had severe symptoms for some time before I got my diagnosis. For four weeks during the time of seeing my doctor and being diagnosed I had very bad stomach pains and was completely unable to eat.  My condition continued to deteriorate all the time – the stomach pain came and went, becoming sharper and more intense as time passed, and I was generally very sick. By the end of this 4 week period, I was unable to walk.   During this time I saw four GPs, each of whom had a different opinion...

Brian's story (53, VIC)

1

I was diagnosed with bowel cancer in May 2011 after experiencing changes to my bowel habits over approximately 2 months, which was followed by abdominal pain.  This led me to my GP who thought the stomach upsets were nothing serious so prescribed a reflux medication and sent me on my way.    I soon returned to my GP after experiencing rectal bleeding, when he then referred me for a faecal occult blood test immediately. ...

Dale's story (49, TAS)

1

Us men rarely go to doctors, let alone get our proper checks. But I recommend to all other men to please listen to your doctor and do exactly what they tell you. Put your faith and trust in them and you will be managed appropriately. I was diagnosed with Bowel Cancer in 2011. Passing blood made me go to my GP to have a check-up. My GP suggested doing a Digital Rectal Examination and having a colonoscopy....

John's story (40, QLD)

1

I started experiencing a change in my bowel habits, stomach pains and rectal bleeding in February 2010 so I saw my GP and was sent for blood tests to investigate the cause of the problems. The results came back normal. However, a month later when the bleeding persisted I was referred for a colonoscopy in mid April. The colonoscopy revealed a 4cm tumour on my sigmoid colon....

Sharon's story (47, QLD)

1

My journey with bowel cancer came as a surprise to me, even though I have an extensive family history of the disease due to Lynch Syndrome (a type of inherited cancer of the digestive tract). My mother, brother and uncle have all had bowel cancer and survived to tell the tale. I suppose I thought it wouldn’t happen to me as I have always been healthy, eaten lots of fruit and veggies plus I’m quite a positive person....

Rick's story (63, NSW)

1

I was diagnosed with advanced bowel cancer in September 2011 after seeing my GP about a very small amount of blood being present on my toilet paper. ** The GP asked me to get a home testing kit from the chemist, conduct the test and return it to him. The test showed it was a positive result so I was referred to another doctor to conduct a colonoscopy. The colonoscopy took place on September 26 and the results showed two tumours in my large bowel. I was booked in for a CT scan the next day. After the scan my doctor told...

Donna's story (45, QLD)

1

I would recommend for anyone reading this to please listen to your body, take notice of your symptoms and get it followed up with your doctor. We all need to push to get looked at when we think there is a problem, because like me, there probably is.  For a couple of years I had experienced bowel changes, which I mentioned to my GP but I was told my symptoms were related to others things. I was tested for coeliac disease as my brother is a coeliac; however, no further tests were done....

Brent C's story (64, NSW)

1

Prior to her diagnosis in 2006, my wife’s concerns about her health were dismissed as a trivial condition because her only symptoms were occasional and very slight rectal bleeding. Each time she raised her concerns with her GP, the GP thought the bleeding was related to other things such as beetroot (we ate a lot of vegetables) or haemorrhoids. However after insisting, her GP finally ordered a colonoscopy which showed my wife had late stage bowel cancer, with metastases in the liver and lungs (stage 4)....

Ella's story (35, ACT)

1

At the age of 35 I started experiencing rectal bleeding so my GP recommended I have a colonoscopy. The colonoscopy confirmed three growths located within my bowel. After seeing my GP it all happened within weeks, it all seemed so fast yet very professional. After being diagnosed I was required to undergo radiation and chemotherapy. Two weeks before Christmas I commenced my radiation cycle which included trips to radiology every day for 6 weeks and chemotherapy in a tablet form, which included 3 pills, twice a day....

Ann's story (37, ACT)

1

I was diagnosed with bowel cancer at the age of 37, totally unexpected at such a young age. The only real experience I’d had with the disease was watching my grandfather live with a colostomy bag after the removal of his bowel when I was a child. But I no longer consider this an ‘old man’s disease’....

Chelsea's story (38, WA)

1

It was very frightening to realise I might die and leave my two small children (aged 1 and 4 at diagnosis) without their mum after being diagnosed with Stage 3 rectal cancer at the age of 37 in April 2012. I noticed occasional rectal bleeding and after about six weeks I went to my GP. She didn’t think it was urgent but recommended a colonoscopy. After a six week wait and a substantial increase in rectal bleeding, the colonoscopy showed a tumour in my mid to low rectum, plus two polyps in my bowel. Over the next few...

Eve's story (51, VIC)

1

I have been a vegetarian for over 30 years, have never smoked and have drank very little alcohol – so to get bowel cancer has been such a rude awakening. I feel I no longer have the security of my health and I worry that the cancer could come back at any time… I first started feeling something was wrong in January 2008. I suffer from many auto immune problems, including Sjogren’s syndrome which causes irritable bowel type symptoms (this threw my GP off the scent and complicated the situation even more)....

Cris' story (34, QLD)

1

I was only two years old when I lost my grandmother to bowel cancer. My Grandmother and my Auntie, were both diagnosed at ages 60 and 40 years respectively. By the time my grandmother was diagnosed, the cancer was terminal. My Auntie was checked out for bowel cancer due to the high family history of the disease. I was here in Australia when she was diagnosed with bowel cancer in Brazil. She had the chance to fight it but could not stand the pain caused by the radiotherapy treatments. I was fortunate enough to be able to vis...

Robert's story (61, NSW)

1

When I was diagnosed with Bowel Cancer I was 61 years old, fit and healthy (at least I thought I was).  I was working in the entertainment industry with a part time job as a spruiker (sales motivator) and also did freelance work in the entertainment industry as a DJ/MC for various events. Approximately 6 years ago, during a prostate check at the local GP, my doctor found a mass on my appendix, protruding into my bowel, fortunately this was benign, however I still required a resection to the right side of my large bowel...

Richard (48, NT)

1

I was diagnosed with bowel cancer in 2007. Ironically, I had just given up smoking and was trying to get fit. I was even riding my bike to work for exercise but I was feeling more and more tired. That’s when I knew something was wrong. Three months prior to my diagnosis, I had been experiencing stomach pains and eventually I ended up in the emergency department of hospital.   The doctors there thought I had Crohn’s disease and arranged for me to have a CT scan. That’s when they discovered the tumour....

Kathy's story (47, WA)

1

During a routine pap smear in August 2011, I mentioned to my doctor that I’d had an uncle who died from bowel cancer at only 51. Immediately the doctor suggested I give a stool sample and, when the results came back positive, a colonoscopy was arranged. A small tumour was found during the procedure, which fortunately was only at stage one. My doctors recommended surgery to remove the tumour as my best option so I went ahead with an operation. No stoma was required. I started chemotherapy after surgery to help minimise...

Helen's story (44, QLD)

1

My experience with bowel cancer began with a niggly pain, not unlike wind pain, that lasted for about 10 days. I had always suffered with endometriosis so I put the pain down to that. Thankfully my husband encouraged me to go and get checked out. When the doctor examined my tummy it was very painful. The doctor diagnosed me as having a burst appendix and before I knew it, I was flown out from our small town to the nearest teaching hospital. I spent three days there on intravenous antibiotics to reduce what they thought...

Helen's story (65, NSW)

1

Unlike many people, I had a lot of symptoms before I was diagnosed with bowel cancer.     I saw my doctor many times about the ongoing pains in my stomach, back and bottom and the mucous in my bowel motions but was told I was probably suffering emotional strain or irritable bowel syndrome.     I was given blood tests but they never revealed anything significant.  It felt like doctors gave me the run-around for nearly a year until I finally found one who took me seriously. ...

Steve's story (66, NSW)

1

Three weeks prior to my diagnosis I had been sent a National Bowel Screen Kit. I looked at it and thought, “I should really do that one day”. Needless to say, I left the kit on the bench and three weeks later ended up seeing my GP on a Wednesday afternoon for a prescription. At the time I complained of having had a slight pain in my abdomen. The GP asked to examine my abdomen and it was then he felt a mass....

David B's story (65, NSW)

1

I was diagnosed with bowel cancer in 1993 at the age of 47.  I had taken a Rotary Bowelscan test (FOBT) and, when it returned a positive result in May, my GP referred me to a specialist.  I was given a colonoscopy in June and told I had a 10 per cent chance of having cancer… turns out, I was in that unlucky 10 per cent!  In July I had a bowel resection.  Looking back, it all happened so quickly.   I felt I coped really well with the cancer at the time but I experienced more problems about se...

Katie's story (35, WA)

1

My brother Jeff was just 31 when he was diagnosed with bowel cancer. He passed away nearly two years later in June 2013. He left behind his beautiful wife Nicole and two gorgeous daughters, aged six and four. Jeff did not have any symptoms that rang any alarm bells until he started to feel like he had no energy. He looked pale and we urged him to visit his doctor for some blood tests which showed him to be anaemic. He then had a colonoscopy and gastroscopy, which showed up a large doughnut- shaped tumour in his colon....

Damien's story (26, VIC)

1

When I was first diagnosed with bowel cancer I did not have enough time to feel ‘sad’ or ‘worry’ too much. I am naturally an optimistic person and an ‘action man’. “I can get through this!” I thought to myself. Prior to my diagnosis at age 26, I had been experiencing dull pains in my pelvic area for 3 to 4 years, extending up through to my belly button and around to the right side of my body....

Lisa's story (41, NSW)

1

I had rectal bleeding and abdomen pain for a year and a half before finally going back to my GP to tell her I thought the diagnosis of piles was wrong! At one point, there was so much blood and mucous that I thought I had haemorrhaged. My GP finally referred me to another doctor who gave me a colonoscopy in January 2008, where he discovered a tumour and a number of polyps, which were removed....

Janice's story (29, NSW)

1

 My father was a fit and healthy man. He ate well, never smoked, almost never drank to excess and played a lot of sports. As a result of old work and football injuries, he suffered from chronic knee and back pain for many years. He also suffered frequent digestive upsets, which he rationalised to be a side-effect of the anti-inflammatory medication he needed to take for his pain....

Kersti's story (56, NSW)

1

My story with bowel cancer began in February 2009 but if I’m honest, it began much earlier with symptoms of rectal bleeding and constipation which I didn’t follow up on with my GP. After my mum died, I went through a stage of not looking after myself; just lying on the lounge, eating way too much pizza and drinking excessively. I kept putting my symptoms down to haemorrhoids, bad diet and grief. My constipation was so bad I was twice forced to go to hospital. Scans were done but nothing showed up. On my third vis...

Margaret's story (50, VIC)

1

I was diagnosed with bowel cancer in 2007 at the age of 50. I had been noticing changes in my bowel habits for some time but it wasn’t until my abdomen was severely distended and I lost the use of my bowels that I was admitted to hospital. I was on holiday in Port Douglas at the time, so I was taken to Mossman Hospital....

Hazel's story (58, SA)

1

If you have any irregularities in your bowel movements, don’t ignore it. See your GP straight away and don’t be embarrassed! The whole experience of being diagnosed with bowel cancer has been emotionally devastating for me. In February 2010, I noticed blood in my faeces and made an appointment to see my GP. I’d had bleeding from haemorrhoids before but this was different. I had also been experiencing an urgency to open my bowels for a few years which I had put down to my history of haemorrhoids....

Carolyn's story (45, VIC)

1

When I was diagnosed with stage III bowel cancer in 2006, I was 45 years old. I am a wife and a mother of three (now 23, 20 & 16 years old) and an office manager.  I had no family history of bowel cancer and I led a healthy lifestyle before my diagnosis, although I was told further along the process that I carry the HNPCC gene, which is a strong indicator of the disease. ...

Howard's story (52, QLD)

1

I was diagnosed with bowel cancer in February 2010 at the age of 51.  I was seeing a specialist at Toowoomba Hospital about my renal condition.  He asked if there were any other health problems; I mentioned the blood in my stool, which I had seen off and on for the last six years.  I didn’t think it that important, as I had had ulcerative colitis over the years.  My GP did not think it was a concern.  Also I had recently done a FOBT test as part of the National Bowel Cancer Screening...

Lynette's story (73, VIC)

1

I was diagnosed with bowel cancer at 72 – just two weeks shy of my 73rd birthday. I’d experienced a little bit of rectal bleeding, but initially thought it was nothing and would go away. When it didn’t, I visited my GP who recommended a colonoscopy....

Sandy's story (38, NSW)

1

Was it not for me having a totally random check-up back in 1999, I would not be alive today.  Still to this day I’m not quite sure what got me to go and have a check up as I was fit and healthy, but what happened next still amazes me. My Gastroenterologist calls me the “luckiest girl in the world” as having that check up saved my life.  Being told at 28 years old that had I not come in for a check-up I would have only had a couple of years to live was a huge wake up call for me.   So to me...

Lorna's story (56, NSW)

1

As a registered nurse for over 30 years, I understand the value of good health and pride myself in maintaining a healthy lifestyle. I see my GP every year for routine blood tests and always attend for routine mammogram when requested. However, when the bowel screening test arrived, I put it in a cupboard until I had time....

Geoffrey's story (70, NSW)

1

Six years ago at 64, I began to notice blood in my stool and reported it straight away to my GP, who referred me to a colorectal surgeon.  A colonoscopy revealed cancer and an operation was recommended as my best option. I’d estimate that from the moment I noticed the blood to finally being operated on took no more than six weeks, which isn’t very long to come to terms with the fact of bowel cancer.  I was given an ileostomy during surgery, which also took some getting used to....

Stephanie's story (21, QLD)

1

I woke from what was supposed to be a routine, last resort colonoscopy and was advised that my undertaking of this small procedure had saved my life. I was diagnosed with bowel cancer last year in October 2012 at the age of 21....

Sinead's story (31, NSW)

1

I was only 26 when I went to my doctor concerned about changes in my bowel habits and feeling very tired. My doctor put it down to stress which frustrated me because I felt I wasn’t being listened to. I went to the ED and remember crying saying, “I know there is something wrong with me”. Coming from a medical background (registered nurse) I demanded to speak with a gastro specialist. The doctor who came along spoke and listened to me as human being, he was empathetic and asked the right questions. He s...

Alison's story (46, QLD)

1

This story is about my mum’s ordeal with bowel cancer. She was diagnosed in 2005 at the age of 73, but her diagnosis had taken some time.  Her rectal bleeding was initially thought to be haemorrhoids, and the GP gave her a cream to treat the condition, but the bleeding persisted and, when she finally had a colonoscopy two months later, they found advanced bowel cancer....

Sandra's story (49, SA)

1

In 2008 I had lap band surgery to help reverse obesity. Since having the surgery, I have had routine blood tests every six months. Prior to one check-up appointment, I noticed a speck of blood in the toilet so during my consultation with my GP (and after she had written a referral for my bariatric specialist) I told her about the blood in the toilet. Straightaway she added this piece of information to the referral just to be sure....

Stacey's story (35, SA)

1

My symptoms were fairly vague.  In January 2010 I had one incident of a very upset tummy, I had had slight rectal bleeding for about 8 months but put it down to having haemorrhoids from having had a baby in the past year, and my bowel movements had been more regular. I was actually at the GP in January 2010 about getting my moles checked for cancer when right at the end I mentioned the above symptoms.  My GP who I now thank for my life, said that at my age I should have nothing and immediately referred me to a gas...

Michelle's story (35, VIC)

1

It’s not so long ago I went to the GP and told her about a few concerns I had and the symptoms that I was experiencing, which my GP considered not to be a big deal. The GP thought it was possibly haemorrhoids. I decided that I could allow myself to be more relieved, seeing as I had expressed my concerns but the GP had predominantly dismissed it being anything serious…. after all....

Jane's story (41, QLD)

1

In early November 2010 I noticed some weight loss and a change in my bowel habits, including rectal bleeding. I went to the doctor in mid-November and was diagnosed with anaemia and booked in for a colonoscopy later that month. I was told on the day of the colonoscopy that I had bowel cancer. The next step was surgery, a high anterior resection, which was done in mid-December. It all happened so quickly that I didn’t really have time to dwell on what was going on, but it never occurred to me before my diagnosis tha...

Richard's story (63, NSW)

1

I successfully beat prostate cancer in 2007 so being diagnosed with bowel cancer so soon after came as a real shock. I did the Rotary bowel cancer test (FOBT) in March 2009 and the results were negative. But later that year, my bowel habits began to change – mainly increased urgency and frequency – and when I twice noticed blood in my stools I decided to take the FOBT again. This time the results were positive.   I was overseas when the results came through in April 2010 so I talked to my GP in Australia...

Ron's story (60, VIC)

1

I’d had rectal bleeding and unusual bowel habits for six to eight weeks before going to see my GP in 2008. I was 60 at the time. My GP gave me an internal examination but found nothing. Nonetheless, he was insistent that I see a specialist and made the call while I sat in his surgery, getting me an appointment for the very next day.  I had a colonoscopy within the week and was diagnosed with stage III bowel cancer.  I had a CT scan the next day, then an ultrasound for tumour staging....

Barbara's story (60, NSW)

1

I had a bowel cancer test in November 2006 which came back all clear, therefore when symptoms started occurring in February 2007 I ignored them, at the age of 57, blamed my new job, the change of lunch hours etc. Initially the symptoms were changes in my bowel habits, rectal bleeding with froth and bubbles. Eventually the symptoms started to get serious, with some stomach pain, a heaviness in the back passage and generally feeling uncomfortable. In September 2007 I couldn’t ignore any of this any longer....

Aly's story (57, VIC)

1

It’s hard not having control and not knowing what is happening. I first went to my GP in Nov 2011 after a government bowel screen test sent back a positive result for blood in the stools. My GP recommended a colonoscopy, which I had in late February 2012. I was shocked to find out I had rectal cancer. There was no indication and no family history of bowel cancer either....

Joy's story (39, NSW)

1

In May 2011 Mum began losing weight and starting experiencing pain on the right side of her abdomen. A colonoscopy discovered a large mass and she was diagnosed with stage 4 bowel cancer. She was 66. Mum was treated with surgery and has since had chemotherapy. Sadly three months ago she started finding it difficult to speak. It seemed as though her nerves were not working effectively, causing her to not be able to eat or talk properly. At that point I didn’t have a good feeling about things so we went back to Mum&rsqu...

Bobby's story (57, NSW)

1

My message to anyone out there reading this would be to stay positive and keep moving forward. Despite what I’ve been through I feel better now than I have in a long time. Prior to my diagnosis, I hadn’t been feeling well for some time. A driving holiday to Melbourne prompted me to see a doctor. I was fine sitting down but as soon as I stood up I had to rush to a toilet. Back in Sydney my GP sent me off for blood tests and a CT scan. The results showed my tumour markers were up so things were not looking good. A...

Antonia's story (62, QLD)

1

I had not been feeling well for a couple of months, tired, lost weight, feeling sick, and then I had 2 episodes of rectal bleeding, the second worse than the first. I went to my GP, after having done some research. I wanted a referral for a colonoscopy. My GP was initially hesitant to refer me on as he thought it was possibly only haemorrhoids, I knew this wasn’t correct. I had blood tests and I was referred to a general surgeon for a colonoscopy. A week after the colonoscopy, the specialist looking after me told...

David G's story (51, NSW)

1

I was diagnosed with bowel cancer (first stage) at the age of 51 as a result of a routine check-up with my GP. Previously I had no symptoms or warning signs of the cancer. During a check-up with my GP I asked about the Government Screening Kit which I had received but ignored. My GP handed me another kit and recommended I do it. I undertook the stool test which came back positive. My GP recommended I have a colonoscopy as soon as possible - it was booked and undertaken two weeks later. Three weeks later I went in for s...

Milly's story (30, VIC)

1

I believe it is important for all of us to fight to be healthy. After experiencing years of diarrhoea and stomach pain, Mum was diagnosed with bowel cancer at age 55. After a urinary infection that persisted, Mum’s doctor suggested an ultrasound where ‘masses’ were discovered on her bowels. She was then referred for an abdomen scan....

Paula's story (54, WA)

1

I was diagnosed in 2008 when I was 54. I had been complaining to doctors for years about various symptoms but I was never sent for tests – not even a bowel screen – until I started bleeding from the rectum. I’ve been an athlete for more than 26 years, competing in marathons, triathlons, even an IronMan event. When you run a lot, diarrhoea is quite common, so everyone – including doctors – kept telling me that my various symptoms were the result of an intense training schedule. I knew things wer...

Carolina's story (33, NSW)

1

I was six months pregnant with my first baby when I started experiencing blood in my stool. I talked to my obstetrician, who said that a little bleeding can often happen during pregnancy but that the amount I was experiencing sounded a little suspicious. She referred me to a gastroenterologist and I decided to wait until after my baby was born to book the appointment....

Kylie's story (36, QLD)

1

I had been seeing bright red blood in my stools for between four and six weeks before I saw a doctor.   Because a similar thing had happened after my children (now four and six years old) were born, the experience wasn’t totally unfamiliar to me.  I felt otherwise OK and my energy levels were normal. Nothing felt unusual or different. I had a sigmoidoscopy on my doctor’s orders on 19 April 2010 and they found a growth which they biopsied....

Warren's story (31, ACT)

1

I am 31 years old and happily married with two children (3 years and 18 months old) and another little boy on the way, due any time now. I'm an Australian  Federal Police Officer currently attached to the Specialist Response and Security Tactical Response Team. Bowel cancer was the last thing on my mind when I started to experience small amounts of rectal bleeding. ...

Carol's story (63, QLD)

1

The main symptom that led to my diagnosis of bowel cancer was a change in my bowel habits, which I discussed with my GP. I was referred to a gynaecologist who diagnosed a uterine prolapse, which affects the working of the bowel, and was sent to a physiotherapist who put together an exercise program for me to help with the problem. When I went back to the gynaecologist after 12 months as requested, I was still having bowel problems so he recommended a colonoscopy....

Trevor's story (40, QLD)

1

Life was quite normal, albeit very busy with a young family and a very time consuming career.  Things changed for me one night when I experienced severe stomach pains after eating a chicken sandwich and immediately self-diagnosed myself with "food poisoning."  The next morning I was severely sick and started to vomit. At this stage I thought I was getting better as I had got it all out of my system....

Vicki's story (57, NSW)

1

Some people are known for their sense of humour, some for their compassion, others for their courage.  Anyone who knew bowel cancer victim Vicki Morris will tell you she was all of this and more. Vicki’s husband Peter writes:  Cancer is one of those things that you think happens to someone else and it is a shock when it comes to your own household.  It doesn’t need to be a death sentence, but the odds are difficult to beat. It takes someone exceptional to deal with it as bravely as Vicki did....

Are you at risk?

           
Both men and women are at risk of developing bowel cancer.  The risk is greater if you -

  • are aged 50 years and over; or
     
  • have a personal or family history of bowel cancer or polyps; or
     
  • have had an inflammatory bowel disease such as Crohn’s disease or ulcerative colitis.

There is emerging evidence regarding type 2 diabetes as a potential risk factor for bowel cancer, however further research is required.

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Bowel Cancer Australia publishes a quarterly email Newsletter - highlighting all the latest developments in bowel cancer advocacy, awareness, education, support and research, as well as important services available to bowel cancer patients, loved ones and the community.

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Healthy eating can be a challenge, particularly for bowel cancer patients.  Making things easier and providing practical support is really important to us here at BCA, so check out the helpful high and low fibre recipes, put together by Nutrition Adviser, Teresa.

We also have a range of nutritional resources developed specifically for bowel cancer patients.