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?

 


 

Bowel Cancer Australia Helpline
Bowel Cancer Australia App
Bowel Cancer Australia Risk and Screening Pathway