Most people ask more questions when ordering a meal at a restaurant or purchasing a cellphone than they do during an appointment with their health care provider. But there are plenty of questions to at least consider asking your doctor if you have multiple myeloma — at least 40 of them.

Forty questions may seem like a lot, but asking questions of your cancer care team is a vital step in making well-informed decisions about your myeloma treatment. And the fact is, people who are involved in cancer treatment decisions:

• Have fewer regrets about treatment
• Are more likely to stick with their treatment plan
• Wind up spending less on health care

On the other hand, people who are less involved in their treatment planning and who don’t express their needs and preferences to their doctors risk poor health outcomes

Asking questions is a critical part of shared decision-making, an approach to health care in which you and your doctor discuss your multiple myeloma treatment options and goals and come to a mutual decision about which treatment is best for you. In shared decision-making, your doctor explains the potential benefits and risks of each treatment for multiple myeloma, and you help the doctor understand what is most important to you.

For shared decision-making to work, you must identify your priorities and communicate them to your doctor. Your main goal may be:

• Achieving or maintaining remission
• Avoiding uncomfortable side effects or serious potential complications
• Maintaining your current lifestyle as much as possible during treatment

You may not need to ask all 40 questions, but the list below can help you make the most of your time with your doctor and make sure you have all the information you need to participate in shared decision-making. Write down the questions that are the most helpful for you, or print this list for your next doctor appointment. If you’re worried or overwhelmed about asking the important questions after your myeloma diagnosis, bring a family member to help you.

When You’re First Diagnosed

It’s normal to have questions when you get your myeloma cancer diagnosis, and this list will help you get the information you need to understand what’s going on with your body.

1. Where in my body is the multiple myeloma located?
2. How advanced is the multiple myeloma, and what does that mean?
3. Will I need further testing before we decide on treatment?
4. How many people with myeloma have you treated?

Discussing Treatment Options

Before you start cancer treatment, it’s important that you understand your options and what each entails.

5. How quickly do we need to make a decision about treatment?
6. What will happen if I delay treatment?
7. What will happen if I do nothing?
8. Which treatment options are available to me now?
9. Which treatment or combination of treatments do you recommend, and why?

For each treatment option, you can ask even more questions so that you thoroughly understand your choices.

10. What is the goal of this treatment? Achieving remission? Maintaining remission? Slowing the spread of myeloma? Improving symptoms and feeling better?
11. How effective is this treatment in cases like mine?
12. What are the common side effects?
13. Are there any potentially severe side effects, and how common are they?
14. Could this treatment raise my risk of other health problems later on, years from now?
15. How does this treatment work?
16. What will you recommend next if the treatment doesn’t work?
17. Can I stop treatment at any time?

During and After Treatment

After choosing a treatment, understanding what will happen and knowing what you should look out for are key to following through with your plan.

18. What can I do to prepare for treatment?
19. What is the treatment schedule?
20. How long will this treatment continue?
21. What side effects should I watch out for?
22. Is there any way to prevent side effects?
23. Is there anything I can do to manage side effects if I have them?
24. Are there signs of severe complications I should look for, and what should I do if I notice them?
25. Is there a recovery period after treatment? What can I do to feel better as I recover?
26. Will I need a caregiver at any point?

Lifestyle During Treatment

Knowing how to live well while undergoing treatment for myeloma will help you get the most out of your treatment, keep your quality of life high, and catch any problems before they become major issues.

27. How will I know if my treatment is working?
28. Would I benefit from palliative care?
29. How often will I need checkups or follow-up appointments?
30. Do I need to change what I eat or drink during treatment?
31. Do I need to take extra precautions to avoid infections?
32. Are there any medications, nutritional supplements, or herbal preparations I need to avoid due to interactions with this treatment?
33. Will I be able to return to my normal activities? If so, when?
34. Is exercise safe during treatment? Will exercise help me feel better?

Getting Assistance

If you need help paying for treatment or getting to treatment and other medical appointments, your oncology team can help you find solutions.

35. Are there any programs to help with the cost of treatment?
36. If travel is required, can any programs help me with transportation?

Best Ways To Communicate

Having a plan for how to get the information you need and communicate updates or questions can give you the confidence to help you get through treatment, even on the hard days.

37. Is there an online portal I can use to make appointments and see test results?
38. Do you offer telemedicine options, such as video meetings, for some appointments?
39. What’s the best way to communicate with you during a health emergency
40. What’s the best way to communicate with you for nonemergency health care needs?

There are more treatment options than ever for multiple myeloma, but it’s important to understand everything you can about how to slow cancer progression and improve your prognosis (outlook). Shared decision-making can help you choose the best treatment for you, with the guidance and expertise of your health care team. If you encounter problems with staying on your myeloma treatment, there are resources to help.

Find Your Community

On MyMyelomaTeam, the social network for people with myeloma and their loved ones, more than 22,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.

How many of these questions have you asked your oncologist? Have their answers helped you make decisions about treatment? Share in the comments below, or start a conversation by posting on your Activities page.