III. Physician-Directed Questions Regarding the Diagnosis of Colorectal Cancer
d engaging in numerous discussions with your treating physician. Being treated for cancer often means that you may have more than one doctor. Your relationship with your treating physician and the other members of your cancer care team constitutes a key part of your care. It is usually best to have one doctor who coordinates all of your care though. This doctor should be someone you feel comfortable with, someone who listens to your concerns and answers all of your questions. Your doctor or oncologist (doctor who specializes in the treatment of cancer) will explain your diagnosis, health status, treatment options, and progress throughout therapy.
There will also be nurses working with your doctor who have special training to care for people with 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 health care team.
Like all successful relationships, your relationship with your oncologist is a two-way street. It is your responsibility to ask questions and learn about your treatment and health – to be an active part of your cancer care team. Hence, a list of useful diagnosis questions have been prepared according to the modality or type of treatment being employed as well as other concerns you may wish to have addressed during your discussions with the respective oncologist, so as to fully prepare and arm you. If possible, bring a spouse, friend or relative with you. They can take notes from your conversation with the doctor. With the doctor’s permission, you may even tape record your discussion with the doctor so you can replay the answers to your questions at a later time. Be sure to bring a pen and pad with you, as you more than likely will not remember all the answers to your questions.
The following questions are a good place to start your discussion with the treating oncologist. 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.
A: Upon Receiving A Diagnosis of Colorectal Cancer
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Upon receiving a diagnosis of colorectal cancer, patients often find themselves shockingly unprepared, not knowing what to ask or how to seek out information in respect of their disease. Below is a list of diagnosis questions with accompanying information to help you prepare for your next visit with the physician followed by a more extensive list of questions for you to ask at either a later date or at the same appointment.
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- What type of colon cancer do I have?
More than likely, the type of colorectal cancer you have is adenocarcinoma, which accounts for approximately 90-95% of all colorectal cancers. There are, however, subtypes of adenocarcinoma (such as signet ring cell and mucinous) and a variety of non-adenocarcinoma colorectal cancers as well, such as neuroendocrine tumors, lymphoma, leiomyosarcoma, and melanoma. The type of colorectal cancer you have can significantly influence your treatment options and prognosis.
- What stage is my cancer?
Determining the colorectal cancer stage is an important part of choosing an appropriate treatment. Colorectal cancer used to be rated using the Duke’s system. For example, Duke’s A cancer was the equivalent of stage 1 cancer. Your doctor will be able to explain in detail which stage your cancer is in and exactly what that means. If you have stage 2 colorectal cancer, be sure to ask whether it is stage 2a or 2b; if you have stage 3, be certain to ask whether it is stage 3a, 3b, or 3c. They each represent something different and can impact the treatment plan.
- What are my treatment options?
Colorectal cancer surgery is the most common treatment for colorectal cancer. In ideal situations, where the cancer is found at a very early stage, a doctor can remove the tumor with a colonoscope during a colonoscopy. Most of the time, however, colorectal surgery is required. Chemotherapy is sometimes recommended for stage 2 colorectal cancer, and usually recommended for stage 3 and stage 4 colorectal cancer in combination with biological therapies that specifically target cancer cells. Radiation therapy is also used in the treatment of colorectal cancer. For a more thorough review of colorectal cancer therapies, please visit the Colorectal Cancer Association of Canada’s website under the headings: “Just the Facts” (www.colorectal-cancer.ca/en/just-the-facts/what-cancer/) and “Treatments” (www.colorectal-cancer.ca/en/treating-cancer/treatment-cancer/).
- What is my prognosis?
Many patients wish to know what their prognosis is but many physicians feel uncomfortable about providing an estimate, especially with later-stage cancers. Please know that your prognosis may change depending upon the different treatment options accessed and nothing is truly written in stone.
- What doctors do you recommend?
Finding the right doctor is an important part of your care. The doctor who diagnosed you (such as the gastroenterologist) may be able to offer recommendations based on his/her personal experience with certain doctors. Remember that it is the patient who makes the final decisions. It is the patient who decides which treatment options to pursue and who is a member of their treatment team. Recommendations would include the following:
- A gastroenterologist or medical oncologist to provide a second opinion
- A medical oncologist to help you settle on a course of treatment
- A colon surgeon to remove the tumor (surgical oncologist)
- Surgeons who specialize in other organs if the cancer has spread to the liver, lungs, brain or peritoneum (surgical oncologists)
The following list of questions is to be directed to the physician who is diagnosing or has diagnosed your colorectal cancer. Ordinarily, such a diagnosis is delivered by the gastroenterologist who performed your colonoscopy or can be delivered by other physicians who may accidentally have discovered your disease, such as an Emergency Room doctor. Therefore, your questions will be directed to the physician who delivers the diagnosis.
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List of Questions Upon Diagnosis
Will you permit me to audio-tape our consultations?
What type of colon cancer do I have?
Where exactly is the cancer located in the colon?
Are you able to tell me if my cancer has spread beyond my colon?
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 colorectal 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 colorectal cancer?
What other doctors will I be required to see for the treatment of my disease? Should I see a surgeon? Medical oncologist? Radiation oncologist? Should these doctors be involved in planning my treatment before we begin? Specialists:____________________________________________________
How do I contact the members of my health care team? Telephone Numbers to Call:
Am I a candidate for surgical removal of the colorectal 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 physician referrals?
Should I obtain a second medical opinion before beginning cancer treatment? Why or why not?
Other questions or concerns….
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If your diagnosis was delivered by the doctor 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.
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Additional Testing - List of Questions
- 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 of care 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 the government or any other agency for the detection of colorectal 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/requisition for the administration of a PET/CT?
C: Treatment of Colorectal Cancer
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By the time a patient is engaging in a discussion regarding treatment options, it is likely the patient may have been referred from their gastroenterologist to a medical oncologist
(to access systemic therapy – drugs infused throughout the body), surgical oncologist
(to discuss surgical candidacy) or radiation oncologist
(to pursue radiation therapy).
Patients may be referred to either one of the above or all depending upon the stage of the cancer. There are three types of standard therapy when treating colorectal cancer: surgery, chemotherapy and radiation therapy. Newer types of treatment have evolved and continue to be tested in clinical trials. These newer types of treatment, called biological therapy, specifically target cancer cells.
Colon or rectal surgery
is the most common treatment for colorectal cancer. In ideal situations, where the cancer is found at a very early stage, a doctor can remove the tumor with a colonoscope during a colonoscopy. Most the time, however, colorectal surgery is required. Chemotherapy
is sometimes recommended for stage 2 colorectal cancer, and usually recommended for stage 3 and stage 4 colorectal cancer in combination with biologic therapies or as standalones. Radiation therapy
is also used in colorectal cancer treatment, especially in the treatment of a rectal tumor that requires shrinkage, as well as in the treatment of colorectal cancer metastases appearing in distant organs such as the liver.
A list of general treatment-related questions has been compiled for patients wishing to explore and engage in a discussion regarding their treatment options after diagnosis. A more extensive and specific list of questions are provided according to the modality of treatment recommended/pursued. Identify those questions pertinent to your case and ensure that your questions and any concerns you have are properly addressed before commencing treatment.
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Treatment-Related Questions to Ask Your Doctor (General)
Is it alright if I audio-tape our conversation?
Is there a cure for my condition? What is my prognosis, as you see it?
How does my past medical history affect which treatments are options for 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 # 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 colorectal cancer treatments are available?
What are the benefits, disadvantages, and possible complications of chemotherapy, radiation therapy, and biological therapy (immunotherapy) for colorectal cancer?
What do these colorectal cancer treatments involve?
How often should I be seen for followup 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 tumor that make it more important for me to consider combination chemotherapy?
Is the recommended therapy covered? If not, will my third party insurance plan cover the therapy?
If I do not have third party coverage, what are my options?
Which center would be able to provide the best treatment for my cancer?
When should I start treatment?
Is it ok to wait to start treatment as a result of ….?
Will I need to spend time in the 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 1, 2, and 3: Should I have additional treatment, even if the cancer is removed by surgery?
Stage 4/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 followup 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 colorectal 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 colon cancer treatments are being developed?
Can you recommend a local or online support group for people who have colorectal cancer and for their families to me?
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? Telephone #________
D: Lifestyle Changes
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When diagnosed with colorectal cancer, changes in lifestyle habits can aid in the management and treatment of the disease. The following list of questions addresses lifestyle factors during and after the treatment of the disease.
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Lifestyle-Related List of 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 friends and family members?
- How will my normal activities change as a result of treatment?
- 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 colorectal cancer diagnosis?