What to Ask When You're Dealing with a Cancer Diagnosis

The best and the worst emails I get are from people asking for help, direction, and/or guidance because they or a loved one has recently been diagnosed with cancer.

It's the worst for obvious reasons - my heart breaks every time for that person and their family. But it's also usually a bright spot because I often feel like I can lend a tiny amount of support - whether that be making a connection to another resource or helping them think through next steps. What I've been doing lately is providing a list of questions people can bring to their appointments. It's so overwhelming to hear the words "you have cancer" that most people absorb very little of what happens in their initial visits with their oncologists and come up blank when their care team asks them, "So what questions do you have for me?" This list is a starting point.

What other tips and questions do you provide when people ask you for help following their cancer diagnosis?

(Also - many thanks to my Oncology Roundtable crew (Marisa Deline , Manasi Kapoor , Lindsay Conway) for years of sharing email templates, notes, and best practice research. And Mitzi Takeuchi took the time to jazz this list up, add context, and make it look beautiful for our Carrum Health members online .)

I hope you and your loved ones never need this resource, but sharing here in case someone else can use it.

Questions for your oncologist

At your first appointment(s), ask your doctor if you can record the conversation on your phone. They should allow you to do so and this can help you process later. At the least, ask a companion/family member to serve as note-taker for you.

Also, you may be an avid researcher and want to know everything about your cancer type and your treatment plan - or you may want to just know the basics. Wherever you fall on that spectrum, that's fine! Your priorities and preferences for information and decision making are up to you.

Questions about your diagnosis and treatment plan

• What is my diagnosis? What type of cancer is it?
• What stage is the cancer??
• Do I need more tests to determine the type or stage of cancer?
• Do I need more tests to determine the course of treatment?
• What is the recommended course of treatment? How strong is the evidence that this is the right plan of care?
• Did you consult other specialists to develop this treatment plan?
• What should I expect during treatment? Will there be side effects?
• How often will treatments occur?
• ?How do most people feel? Will this affect my daily routine or my ability to work?
• What specialists might I see during the course of treatment? (e.g., follow-up scans, blood work, nutritionists)
• Am I potentially eligible for a clinical trial? (if of interest)??
• What information can you share with me for me to review at home? What are good sources of information online??Note: American Cancer Society and NCCN tend to be reliable sources of information if you’re interested.

• Is there anything I should (or shouldn’t) be doing now? Stopping or starting any medications?
• How quickly does this cancer typically grow? Do I have a choice of when to start treatment? Note: Most of the time, you can take a little bit of time. Don’t feel rushed into starting ASAP if it's not necessary. I know it’s easier said than done, but it's good to understand options and seek out a second opinion if you're able to.?
• If I have questions for you, what should I do? Do you have someone in your office who can help respond to my questions?
• Would you recommend that I get a second opinion?Note: I recommend getting a second opinion to my family and friends. Many leading cancer centers offer these virtually now (e.g., Memorial Sloan Kettering, City of Hope, Mayo ,Cleveland Clinic, and many more). Often, a second opinion will verify that your diagnosis and treatment plan are correct and you can continue seeing your current oncologist, but I recommend doing this if you can.
• Why should I choose you? What makes you a high-quality doctor/cancer center/care team?

Questions to prepare for treatment

• Do I need to schedule surgery? What will pre-op and post-op look like? Is rehab part of my plan?
• How often will I receive chemotherapy? How should I prepare and what should I bring with me to the infusion center?
• How long will my course of radiation therapy last? How long will appointments be?
• Will I be able to work or fulfill other obligations while I receive treatment?
• Do you offer support resources to help me and my family cope with this diagnosis?
• Is there information you can share with me that I can review at home?
• Will insurance cover the treatment? What do you expect I will pay out of pocket?
• Who should I contact if I feel sick and it's outside business hours?
• What symptoms should I monitor and who do I contact if I need help?

Questions to get the support you need, when you need it

Does this cancer center offer…

• Navigation?
• Counseling services?
• Complementary medicine (e.g. yoga, meditation)?
• Support groups?
• Nutritionists?
• Financial navigation/counseling?
• Symptom management? (e.g., you don’t feel great and it’s 4pm in the afternoon – if you call the clinic, are they able to help support or will they tell you to go to the emergency room?)
• Palliative care??Note: Palliative care is NOT the same as end-of-life or hospice care. Many people are in active, curative treatment with their oncologist and also seeing a palliative care specialist. Palliative care specialists, which can be doctors, PAs, or nurses, help address the side effects (emotional, psychological, physical) of diseases and their treatments.?

Three major nonprofit organizations in the cancer space that offer support to people dealing with a cancer diagnosis include:

• Cancer Support Community
• CancerCare
• Patient Advocate Foundation