Kaposi Sarcoma: Treatment Questions

Talking with healthcare providers about your cancer can be overwhelming. It can be hard to take in all of the information. It helps to be prepared. Make a list of questions and take it to your appointments.

Make sure you ask how the treatment might change your daily life, including your diet. Ask how you will look and feel during and after treatment. Ask how well treatment is expected to work and what the risks and possible side effects are. Write the answers down. You may also want to ask a friend or family member to go with you. They can take notes, write down answers, and might also ask questions you may not think of.

Here are some questions you may want to ask. Not all of these might apply to your situation. But asking the questions that do can help you get a better idea of what to expect.

Deciding on a treatment

• What type of Kaposi sarcoma do I have?

• Has it spread? If so, where?

• If I have HIV, who will manage it?

• Do I need any more tests before we decide on treatment?

• What are my treatment options? 

• What treatment do you think is best for me? Why?

• What are the goals of treatment?

• What is the success rate of this treatment for my cancer?

• How much experience do you have treating cancers like mine?

• Should I get a second opinion? 

• Are there any clinical trials I should look into?

• Will my insurance cover treatment? How much will I have to pay?

Getting ready for treatment

• How soon do I need to start treatment?

• What should I do to be ready for treatment?

• What will treatment be like?

• Where do I have to go for the treatment?

• Who will give me the treatment?

• Does someone need to go with me during treatments?

• Will I be well enough to drive myself or take public transportation to treatment? Is there someone who can help me with transportation problems?

• Can I take my other medicines during treatment?

• How long will I be in treatment?

• Do you have someone on staff who can help me with financial concerns and other resources?

Coping during treatment

• How will we know if treatment is working?

• How will I feel during and after treatment?

• Will I be able to go to work or school and be around my family during treatment?

• What side effects can I expect?

• How long will side effects last?

• Will treatment affect how I look or feel, or how active I can be?

• What side effects do I need to call you about?

• What number do I call? After office hours? On holidays and weekends?

• What can I do to ease the side effects?

• Should I change my diet? What foods can’t I eat?

• Are there support groups nearby or online that I can join?

After treatment

• How will I feel after the treatment?

• What type of follow-up will I need after treatment?

• How will we know if treatment worked?

• What are my options if the treatment doesn't work or the cancer comes back?

• How will we know if the cancer comes back? What should I watch for?

• Who will be in charge of my care after treatment ends?

• How can I get a copy of the treatment summary and a follow-up care plan (survivorship care plan)?

Making a decision

When you have answers from your healthcare provider, it’s time to think about what's best for you. Think about what side effects you can and can’t handle. Talk about all of your concerns with your healthcare provider before making a decision about treatment. You may want to also get input from family and friends.