Below is a list of questions to ask your GP about screening for bowel cancer.

Mark the questions you would like answered and take them with you to your next appointment.

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• Based on my personal and family history, do I have any of the risk factors that would make me likely to develop bowel cancer? 

• How often will I be requiring a colonoscopy?

 

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If your GP/specialist 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.

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• 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?

 

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

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• 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 GPs 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?

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Your specialist may wish to pursue additional testing to either 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?

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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 of relevance 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? 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 targeted 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, II, and III:  Should I have additional treatment, even if the cancer is removed by surgery?

• Stage III/Recurrent/Relapse: 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?

 

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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 specialist 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 specialist that they would like to seek out a second opinion.

Knowing that it is quite common for patients to seek out a second opinion, the following list of questions may aid in addressing the subject with your specialist. Most specialists are comfortable with such requests.

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• 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?

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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 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.

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 specialist.

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

 

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.

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• 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? 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?

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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?

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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?

 

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

In the event that an ileostomy or colostomy is required, the following questions may assist you in your discussion with your specialist, who is usually a colorectal surgeon.

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• Will I require an ileostomy/colostomy?

• If I have an ileostomy/colostomy, will it be temporary or permanent?

• If I have a temporary ileostomy/colostomy, when will I have additional surgery to have the stoma removed?

• Will I be assigned a stoma nurse to provide detailed information, answer questions and help me learn to manage it after the surgery?

• Will I be required to change my diet?

• How will the ileostomy/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?

 

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This concise list of chemotherapy-related questions may assist you when engaging in a conversation with your specialist (who is usually a medical oncologist) about the administration of chemotherapy and targeted therapies.

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• 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?

• How will I feel after my treatments?

• Will I be able to work?

• Will I be able to take care of my family?

• 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 my 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 targeted therapy in conjunction with chemotherapy?

• If so, which do you recommend? (Avastin, Erbitux, Vectibix, Stivarga)

• Do I qualify for immunotherapy? If so, which do you recommend? (Keytruda / Opdivo)

• If oxaliplatin is recommended, will I be accessing magnesium/calcium infusions before and after oxaliplatin infusion?

• What are some of the support groups I can turn to during treatment?

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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 targeted therapies such as Avastin, Erbitux, Vectibix, Stivarga 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?

• Do immunotherapies such as Keytruda and Opdivo have any side effects? If so, what are they and how can I either safeguard against their onset or have them treated?

• Who should I call and what are the reasons that I should call at night or on a weekend if necessary? Number to call?

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The following questions may assist you with your discussions with your radiation oncologist should you need radiation therapy.

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• 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 family?

• 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? Number to call?

• Will radiation therapy affect my ability to have children?

• What is the cost of radiotherapy? Is it covered by Medicare?

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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? Number to call?

 

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Questions to ask about radiation therapy-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?

 

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Questions to ask after radiation therapy

• 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?

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The following list of questions may assist you with your discussions with your therapist or specialist if you are considering complementary therapies during or after bowel cancer treatment.

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• What is the potential benefits/downside to this type of therapy?

• What is the scientific evidence to support its use?

• Is the therapist happy to able to work with conventional treatments?

• What lifestyle restrictions will I have during treatment? For example, can I exercise the way I always have?

• Will the therapy cause any side effects?

• Will the therapy cause possible interactions with my prescribed medication or medical treatments?
  
  
• Can I afford the cost of the consult and the complementary supplements

 

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General questions to ask your specialist

• Are you familiar with complementary therapies or medicines?

• Do you have any qualifications in complementary therapies?
  
  
• Are there any complementary therapies you think might help me?
  
  
• Would you be happy for me to use complementary therapies? If not, what should I do if I decide to use complementary therapies?
  
  
• Do you know whether the complementary medicines I am taking or wish to take will interfere with any of my treatments?
  
  
• Would you be willing to guide me in my research or choice of complementary therapies?
  
  
• Would you be willing to talk to my complementary therapist?
  
  
• Can you recommend any complementary therapists?

 

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

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• Will my life change? If so, how? Will I need to make changes in my work, family life, and leisure time?

• Can I drink alcohol?

• 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?

 

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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 management of your care.

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. 

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• 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 specialist must prepare when patients are sent home

• If you have had radiation therapy, a final summary of the dose and field

• If you had chemotherapy, a final summary of the dose(s), number of cycles and type of drug(s)

• 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)  

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You may ask your specialist’s office staff for copies of your records. Asking for your records as soon as they are generated is advisable as the office may relocate, close during the holidays and staff may depart on vacation, for example.

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 specialist visits will be requiring the information.