My cancer treatment checklist of questions.

ABOUT THE AUTHOR: Rochelle Broder-Singer is a journalist with over two decades of experience in journalism and communications. In addition to her professional achievements, Rochelle is currently writing a series of articles for Sylvester Comprehensive Cancer Center to share her personal experiences as a breast cancer survivor.

MIAMI, FLORIDA (March 28, 2025) – As a cancer patient, it can be challenging to ask questions of your health care providers. Even though I am a trained journalist who practically asks questions for a living, I struggled with all the questions I had during the early parts of my cancer journey.

It’s easy to be intimidated by the experts who are your professional caregivers or to worry that you’re taking up too much of their valuable time. Then there’s the desire to appear well-informed and well-educated about your health.

“Sometimes, people think they kind of get it or don’t get it at all and are embarrassed to ask questions,” says Andrea Marie Cook, M.S., B.S.N, RN, CSN, patient and family education and health literacy manager for Sylvester Comprehensive Cancer Center, part of UHealth – the University of Miami Health System. She explains that asking and understanding the answers to questions about your health is a key aspect of health literacy, which is the ability to access, understand, and use health information. “People with lower health literacy have a higher rate of death, even when controlling for age and income,” she says.

Even if you have the best intentions to ask questions, once you get into an appointment, it’s tough to remember your questions. If you’re like me, they popped into your brain while trying to fall asleep or reading something on the American Cancer Society website. Or a friend asked you questions you couldn’t answer.

The bottom line is that you need to be your own health care advocate, which means asking questions.

During my cancer treatment, I have found it essential to keep a running checklist of questions for my medical providers. I discussed this in my first column about my cancer journey. Having that piece of paper in hand helped me remember what I wanted to ask and gave me the courage to actually do the asking. I set it up as a checklist, and that checklist held me accountable.

Cook, too, suggests writing down questions, adding that it may help to sit down with a loved one and brainstorm together. “Make a list of questions the night before your appointment, the morning of,” she says. If you’re a digital person, she recommends using the mobile AHRQuestionBuilder app, created by the Agency for Healthcare Research and Quality, to prepare for medical appointments.

Many readers have asked about the checklist of questions that I used, so I’m sharing it below. I think it’s a good starting point no matter what type of cancer you’re facing, and my breast cancer-specific questions are at the end.

Questions for Right After You Learn You Have Cancer

Your goal at this stage is to ensure you have the correct diagnosis and understand your possible treatment paths. Ask these questions at your first doctor’s appointment. If you’re getting a second opinion – which I highly recommend – ask them of both doctors. Further testing, or even surgery, may be required before your doctors can answer all of these questions.

If you only ask five questions, make it these: What is my main problem? What caused it? What do I need to do about it? How do I do it? Why is it important that I do this?

Other questions include:

• Can you please explain the lab report to me, line by line?
• What other diagnostic steps are required?
• Will you be doing tumor profiling tests?
• Who can talk with me about the cost of my treatment (including the expenses covered by my insurance and the fees I should expect to pay out of pocket)?
• Should I consider genetic testing?
• How big is the cancer?
• What is the tumor grade? Do you know if it’s fast-growing or slow-growing?
• Can you tell me what stage my cancer appears to be?
• What type of treatment do you suggest I begin with: surgery, chemotherapy, immune therapy, or something else?
• What are the potential side effects of additional treatments?
• What might my full treatment path look like based on what we know now?
• Should I consider participating in a clinical trial?
• Do I need to stop or change any of my current medications, supplements, vitamins, etc.?
• Can I contact you for medications if I’m experiencing anxiety or sleep difficulties as a result of my diagnosis?
• Are there any beauty products I should stop using? Can I still color my hair?
• Are there any foods I should avoid? What about foods I should add to my diet?
• Do you recommend that I stop drinking alcohol?
• Should I change my exercise routine or start exercising if I haven’t been?
• What else can I do to be in better physical shape for treatment or better prepared overall?
• What can I do now to increase the likelihood of a positive outcome?
• Does my diagnosis change the cancer risk profile of any of my family members – for this or other cancers?
• How can I best get in touch with you between appointments?

Questions for Your Surgeon Before Surgery

For me, surgery was the first treatment step, so I asked my surgeon all of my early questions. If surgery is part of your cancer treatment, you want to understand your surgery and why you and your doctor have chosen this path. You also want to plan for post-surgery restrictions and any assistance you need. Start asking these questions at your very first appointment. Don’t wait until after surgery—it’s important to understand the answers to plan out those early post-surgery weeks ahead of time.

• What are my options in terms of types of surgery? What are the pros and cons of each?
• What does the research say about outcomes?
• Do you plan to remove lymph nodes? If yes, how many?
• Will part of the tissue you remove be saved? If so, where and for how long? How can it be accessed in the future?
• What side effects might each type of surgery lead to? How might they be mitigated in each case?
• How can I reach you on nights, holidays, or weekends?
• How long will I be in the hospital?
• When I get home, will I have a drain tube in place? If yes, how will I care for it? When will it be removed, and how?
• What type of help might I expect to need when I get home?
• How will I care for the surgery site?
• What side effects do I need to report to you?
• When and how should I begin self-treating the scar? Arnica, aloe vera, or Vitamin E oil?
• How long will it take to return to my normal routine, including work, regular exercise, picking up heavy objects, housework, driving, etc.? (Each of these may have a different answer.)

Post-Surgery Questions About Pain

Even the most minor surgery is likely to leave you with some pain. Major surgery may include significant pain. You should not be suffering – ask about pain management. It’s entirely sensible to ask these questions before surgery. Still, you’ll want to ask again post-surgery, preferably with a companion nearby taking notes (you may be too groggy to remember much). Remember that pain control isn’t only about medication; ice, topical pain relievers, acupuncture or acupressure techniques, or massage may be available to help control your pain.

• What can be done to relieve my pain?
• What can we do if the pain medications don’t work?
• What are the side effects of the pain medications? What can be done to prevent or manage these side effects? What side effects should I report to you?
• Do I need to avoid taking any other medications while taking pain medication?
• What other options do I have for pain control? 

Other Post-Surgery Questions

Post-surgery priorities include understanding if your diagnosis has changed, whether you are at risk for lymphedema, and what activity you should be doing. In most cases, your surgeon will want you to start moving around as soon as possible, even if it’s only walking for 15 seconds several times a day. I had a lumpectomy, with 14 lymph nodes removed. My medical team kept reminding me to use my arm – just not to drive, lift anything over six pounds, or raise it above my shoulder. Later, I went to physical therapy for lymphedema prevention.

A note: It will take some time to get full lab results back, so you may not be able to get answers to all these questions right away.

• Were there any surprises?
• Was the entire tumor removed?
• What did the tumor margin show?
• Has my diagnosis changed due to information learned during surgery or post-surgical lab results?
• Were any lymph nodes removed? If yes, did any have cancer?
• What is the current stage of my cancer and the current diagnosis? What does this mean?
• Do you recommend further surgery at this time?
• Can you please go through the results reports from the surgery with me, line by line, and explain what they mean in layperson terms?
• Will you now conduct tumor profiling tests, such as …? If not, why not? If yes, what might we learn? When will you have results, and how will I know and understand them?
• What further treatment do you recommend, and who will I see to receive it?
• What special care instructions do I have?
• Can I lift heavy objects? Drive? Use my arms or legs normally? What restrictions do I have?
• Are there any short-term or long-term restrictions on acupuncture,  massage therapy, or other complementary therapies? Do you recommend oncology massage as part of my recovery?
• What can I eat or drink to help with my recovery?
• When should I start exercising again, and what should I be doing?
• Are there any special activities I should engage in right away?
• How do I minimize the chances of complications such as a frozen shoulder, bedsores, or muscle atrophy?
• Am I at risk of lymphedema? If yes, how soon can I start physical therapy to prevent lymphedema? Who will prescribe that? Where should I call to make my physical therapy appointment?
• Do I need compression garments? If yes, how can I obtain them? When do I wear them?
• Which health care provider will oversee my follow-up care?

Questions for Your Medical Oncologist

Ultimately, you will be in a long-term relationship with your medical oncologist (who may also be your surgeon). This is likely the doctor you’ll see for the majority of your treatment and hopefully for years after active treatment is finished. At this stage, one of your most important goals is to find the right fit for you. You’re looking for someone who listens to your concerns and addresses them, someone who will work with you to minimize symptoms and side effects. Here are some questions to ask in your early appointments.

• What are some potential major and “minor” side effects of treatment: chemotherapy, radiation, endocrine disrupters, etc.?
• What are some options to manage the most common side effects?
• What side effects have you seen the most in patients like me?
• Tell me how you’ll help me manage other side effects, especially long-term ones that are very life-disruptive or uncomfortable.
• Due to interactions, should I change my current medications, vitamins, supplements, or eating habits?
• How long do I have to make my next treatment decision?
• Should I consider participating in a research study or clinical trial?
• Am I considered immune-compromised at this time? What about during the following treatments?
• How often will I need follow-up exams, blood tests, or imaging tests?
• What are the chances my cancer will come back?
• How will we know if the cancer has come back? What should I watch for? What will my options be if the cancer comes back?
• What is my 10-year, 20-year and 30-year survival prognosis?
• How can I reach you on nights, holidays, or weekends?

Questions for Your Radiation Oncologist

Radiation is one of the longest-used cancer treatments. Today’s radiation therapy is highly targeted and often has fewer side effects than it did even a decade ago. If it’s part of your treatment plan, radiation will be overseen by a specialist and administered by a team of experts. You’ll probably have restrictions about what you can put on your skin, what you can wear, and what you should eat. Radiation treatment’s challenges and side effects can vary widely, so ask many questions.

• How will radiation therapy affect my risk of a local cancer recurrence, metastasis, or a new cancer? Please explain the differences.
• Is external radiation or internal radiation therapy indicated? If I have a choice, what are the pros and cons of each?
• How long will each treatment session take? How many sessions will I have?
• When will I begin radiation therapy? Can I choose the days and times of treatment?
• What areas will be targeted?
• Can I come to treatment sessions alone, or should someone accompany me? Will I be able to drive home?
• What clothes should I wear to the treatment sessions?
• Can I wear deodorant to the treatment sessions?
• What lotion, soaps, or other skin care products should I use or avoid during treatment?
• How often will my skin be examined for side effects?
• What side effects should I expect? How long might they last? Which side effects need medical care?
• What problems should I report to you right away?
• What are the long-term risks of radiation therapy?
• What precautions should I take during treatment?
• Can I continue regular activities? Are there activities I should avoid, such as bathing, swimming, or going in a hot tub?
• Who do I contact if I have problems or questions about my treatment? What about on weekends or holidays?

Breast Cancer-Specific Questions

I am a breast cancer survivor. The first doctors I saw after my gynecologist called to tell me I had cancer were the breast surgical oncologists I went to for first and second opinions. I saw them both on the same day (yes, information overload!), and I asked each of them the same things. Here are some of the breast-cancer-specific questions I asked my surgical oncologists at those first appointments, as well as the questions I asked my surgical, medical, and radiation oncologists later in my journey.

• What is my HER2 status? Is this unclear right now?
• Is this a hormone-sensitive cancer?
• What type of breast cancer surgery do you suggest for me?
• What are the pros and cons of this surgery?
• What are the outcome differences between full and partial mastectomy (also called a lumpectomy)? What does the research show?
• If mastectomy, what type? Both breasts or one?
• What kind of breast reconstruction might I need or want, and how would it be done? Can it be done at the same time as the original surgery? Do I need to consult a reconstruction specialist before surgery?
• Will you remove lymph nodes? If so, how many do you plan to remove?
• Will you do a sentinel lymph biopsy?
• What is the breast imaging screening plan? Do the mammogram and ultrasound from just before surgery become my current screening? What about MRI? What do I need to do next, and when?
• How will you locate the area you need to operate on for lumpectomy?
• What other breast cancer treatments do I need to consider?
• Do you recommend that I take an endocrine disrupter medication, such as tamoxifen, anastrozole, letrozole, etc.? For how long? How will this change my long-term survival prospects?
• Does my ob-gyn need to do anything special to monitor me for the increased risk of uterine cancer with tamoxifen?
• When should I have a baseline bone density scan?
• What do I need to do to minimize bone loss and reduce the possibility of osteopenia or osteoporosis?

Remember, nobody can go through cancer alone. If these questions feel overwhelming, you need assistance with post-surgical care, navigating the health care system, or facing transportation or financial barriers to care. An oncology social worker can help. 

Read more on the InventUM blog and follow @SylvesterCancer on X for the latest news on its research and care.

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