How to use the question icon for examples of patients' questions
Throughout the tree's modules, the sidebar on the web page will have the question icon. Each branch also has the patient questions relevant to that topic. When you are uncertain what questions may be appropriate to ask, click on the question icon The question mark icon will give you a list of questions relevant to the current module you are in

Helpful Hints: Things you can do before your appointment with the providers

• There are examples of questions patients use to ask their provider throughout the decision tree (see the question mark icon)
• These questions can be found by clicking on the question mark
• Go through the sample questions and mark the ones that you'd like to have answers to
• You may want family members or the Patient Advocate to help you select the questions to ask
• You and your trusted friend/Advocate may want to practice saying the questions before you get to the clinic
• Keep a pad of paper with you at all times and write down any question that comes to mind.
• You can talk with your Patient Advocate about asking these questions.
• There are no dumb questions except for the ones you don't ask.

1. Will IHS pay for my cancer care a second time?
2. Could this actually be something else besides my cancer coming back?
3. What does this recurrence mean?
4. What tests do I need to do to make sure?
5. If cancer, what stage is it?

1. Spirituality (patient's questions about spirituality) (coming soon)


2. Communication (patient's questions about communication) (coming soon)


3. Treatment
1. General (general patient's questions about treatment)
2. Surgery
3. Chemotherapy
4. Radiation
5. Adjuvant (patient's questions about adjuvant / hormone / other) (coming soon)
6. Palliation / comfort care (coming soon)


4. New Treatments (patient's questions about New Treatments)


5. Clinical Trials (patient's questions about clinical trials)


6. Side Effects
1. General (patient's general or overall questions about side effects, things like, "aren't the treatments worse than the disease?")
2. Pain
3. Fatigue
4. Neuropathy (coming soon)
5. Lymphedema (coming soon)
6. Hair loss (coming soon)
7. Sexual dysfunction (patient's questions about sexual dysfunction, intimacy) (coming soon)
8. Fertility (coming soon)


7. Co-Morbidities (coming soon)
   1. Diabetes
   2. Arthritis
   3. High blood pressure
   4. Heart conditions
   5. Obesity
   6. Other

1. What is the purpose of the study?
2. Why do researchers think the approach may be effective?
3. Who will sponsor the study?
4. Who has reviewed and approved the study?
5. How are study results and safety of participants being checked?
6. How long will the study last?
7. What will my responsibilities be if I participate?

1. What are my possible short-term benefits?
2. What are my possible long-term benefits?
3. What are my short-term risks, such as side effects?
4. What are my possible long-term risks?
5. What other options do people with my risk of cancer or type of cancer have?
6. How do the possible risks and benefits of this trial compare with those options?

1. What kinds of therapies, procedures and /or tests will I have during the trial?
2. Will they hurt, and if so, for how long?
3. How do the tests in the study compare with those I would have outside of the trial?
4. Will I be able to take my regular medications while in the clinical trial?
5. Where will I have my medical care?
6. Who will be in charge of my care?

1. How could being in this study affect my daily life?
2. Can I talk to other people in the study?

1. Will I have to pay for any part of the trial such as tests or the study drug?
2. If so, what will the charges likely be?
3. What is my health insurance likely to cover?
4. Who can help answer any questions from my insurance company or health plan?
5. Will there be any travel or child care costs that I need to consider while I am in the trial?

1. Consider taking a family member or friend along, for support and for help in asking questions or recording answers.
2. Plan ahead what to ask--but don't hesitate to ask any new questions you think of while you're there.
3. Write down your questions in advance, to make sure you remember to ask them all.
4. Write down the answers, so that you can review them whenever you want.
5. Consider bringing a tape recorder to make a taped record of what's said (even if you write down answers).

Sample QuestionsTop of Page

CHEMOTHERAPY QUESTIONS

• What side effects am I likely to have with this chemo?
• How can the side effects be lessened?
• How long will the side effects last?
• What can I do about side effects that are permanent (like heart problems)?
• If Contracted Health Services runs out of money while I am going through chemo, how can it be paid for so that my treatment is not interrupted?
• Do I have to have my chemo treatments in the clinic / hospital?
• Are pill-form of chemo less effective that IV methods of receiving the drugs?
• What are side effects that are severe enough that I should contact the doctor?
• How do these chemo drugs affect my insulin drugs?
• How do these chemo drugs affect my arthritis drugs?
• Why do some people who are taking the same medications as me not have as bad an experience? Or as good of an experience?
• How can I describe the severity of my side effects to the providers so that they understand what I am going through?
• Do the side effects mean that the drugs are working?

Sample QuestionsTop of Page

RADIATION QUESTIONS

• Exactly what type of radiation treatment will I be getting?
• Who will be responsible for coordinating my radiation treatment? For giving my treatment?
• If I have questions about my radiation treatment who should I ask?
• Can I continue to work during these treatments?
• Where is the best place to have the treatments?
• How long will it take for each treatment? For the whole series?
• Will I be able to drive myself to and from my treatments?
• What side effects can I expect? How long will they last? Can these side effects become chronic? Are there possible long-term side effects?
• How do I handle side effects if they occur?
• What side effects should I report to the radiation oncologist?
• How much will this treatment cost? Is it covered by insurance?
• How much of a risk is involved? Will the radiation affect the surrounding areas?
• Will I be having other kinds of treatment in addition to the radiation?
• Are there any alternatives to radiation treatment?
  
  Excerpt used with permission from Marion Morra and Eva Potts, Choices. HarperCollins Publishers: New York, NY 2003, pp. 200-201. Linda B's personal #1 recommended book for survivors and their loved ones.

• Why do Natives have more burns and rashes than other racial groups?
• If IHS / Tribal / Urban programs cannot afford to send me to radiation treatment, how can I get help?
• If I want to take part in the Walking Forward internal radiation clinical trial, who do I contact?
• Will I be radioactive during the weeks I am having the radiation treatment? If so, how should I behave (like hugging or holding my grandchildren on my lap)?

Sample QuestionsTop of Page

SURGERY QUESTIONS
Questions to Ask the Doctor Before the Breast Operation

• Will you be able to just take the lump out or will you have to take my whole breasts? Both or only one?
• How long will the operation take?
• How should I expect to feel after my operation?
• Will I need blood transfusions during the operation and should I bank my own blood before going to the hospital?
• What will the scar look like? Please show me where it will be.
• Will I be in pain? What will you do for my pain?
• How long will I be in the hospital?
• How soon after the surgery before my traditional healer visit me and help me?
• Will I need special care at home after the surgery?
• When can I get back to my regular routine? Will I have to take any special precautions?
• What kind of exercises should I do?
• How long will the recovery take? When can I get back to my regular routine? Will I have to take any special precautions?
• When, following the operation, will you let my family / friends know the outcome? Where will they meet you?
• What are the possible after-effects of the operation?
• How disabling will the operation be? Temporarily? Permanently?
• Will I have drains, catheters, or intravenous lines?
• How many times have you done this operation?
• If I decide to have breast reconstruction, can it be done as part of this operation?
• If I decide not to have reconstruction, what other choices will I have? "Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 330"

• What is this surgery for? Why do you feel I need it?
• I need to wear a private token during the surgery that is important to my healing. Where can I have the nurse help me tape it so that it is with me, but not in your way (e.g., totem bag placed in small plastic bag, taped to back of thigh... Betadine can be applied to the outside of the plastic bag)?
• Where can my spiritual healer come on the morning of surgery to pray with my family and I before I go into surgery (before I am under medication)?
• Exactly what do you plan to do? Please explain it to me in simple terms so that I can explain it to my family.
• What other kind of treatment can be used instead of surgery?
• Is this surgery dangerous? What are the risks and what are the benefits?
• Where within our Indian health care system can I get a second opinion quickly (within a week)?
• I need to prepare spiritually for the surgery. This preparation will take about one week. What problems, if any, do you see for me delaying the surgery 1 week? What advantages, if any, do you see for me delaying the surgery 1 week?
• Please show me what parts of my body are involved in this surgery?

• Will IHS/ Tribal / Urban Indian Health Programs pay for breast reconstruction?
• What are the different choices of reconstruction surgery? What type do you think is best for me? Why?
• Should I have the reconstruction at the time of my mastectomy or should I wait until later? How much later can I have it done? If I need to have chemotherapy, should I wait until I have finished that treatment?
• What are the advantages and disadvantages of having reconstruction at the time of my mastectomy? Of waiting to have it until later?
• What are the side effects and risks that I should consider?
• Will you be using tissue expanders? A saline filled implant? Can you use my own tissue?
• Will you explain how the surgery will be done? What kind of anesthesia will you use?
• What will I look like after the surgery? What kind of scars will I have and where will they be?
• What will my new breasts look like? Will it match my other breast? Will it change over time? Will I have to have anything done to my other breast?
• Can I have my nipple reconstructed? How will it be done?
• What is your experience with this operation?
• Do you have any before and after pictures you can show me?
• May I talk with someone who has had the operation?
• How many operations will I have to have? Will I need to be in the hospital each time? For how long? How long will I need for recovery?
• Will I be in much pain?
• Will I need to wear a special bra after my operation?
• How much will it cost? Will my insurance cover any part of it?
• What can be done if the surgery is not successful?