Questions to Ask About Kaposi Sarcoma

It’s important to have frank, open discussions with your cancer care team. They want to answer all of your questions, so that you can make informed treatment and life decisions. For instance, consider these questions:

When you’re told you have Kaposi sarcoma

• Where is the cancer located?
• Has the cancer spread beyond the skin? Has it spread to nearby lymph nodes or other organs?
• What is the cancer’s stage (extent), and what does that mean?
• Will I need other tests before we can decide on treatment?
• What is my CD4 count and should I be doing anything to try to increase it?
• Are there any other infections contributing to my condition?
• For AIDS-related KS, is my HIV viral load controlled?
• Do I need to see any other doctors or health professionals?
• Based on what you’ve learned about my cancer, what is my prognosis (outlook)?
• If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?

When deciding on a treatment plan

• What are my treatment options?
• What do you recommend and why?
• How much experience do you have treating this type of cancer?
• Should I get a second opinion? How do I do that? Can you recommend someone?
• What would the goal of the treatment be?
• How quickly do we need to decide on treatment?
• What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What risks or side effects are there to the treatments you suggest? Are there things I can do to reduce these side effects?
• How might treatment affect my daily activities? Can I still work full time?
• What are the chances the cancer will recur (come back) with these treatment plans?
• What will we do if the treatment doesn’t work or if the cancer recurs?
• What if I have transportation problems getting to and from treatment? 

During treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but asking the ones that do may be helpful.

• How will we know if the treatment is working?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach you on nights, holidays, or weekends?
• Do I need to change what I eat during treatment?
• Are there any limits on what I can do?
• Can I exercise during treatment? If so, what kind should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
• What if I need social support during treatment because my family lives far away?

After treatment

• Do I need a special diet after treatment?
• Are there any limits on what I can do?
• What other symptoms should I watch for?
• What kind of exercise should I do now?
• What type of follow-up will I need after treatment?
• How often will I need to have follow-up exams and imaging tests?
• Will I need any blood tests?
• 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?

Along with these sample questions, be sure to write down some of your own. For instance, you might want more information about recovery times, or you might want to ask about clinical trials.

Keep in mind that doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer some of your questions. To find out more about speaking with your health care team, see The Doctor-Patient Relationship.