After Kaposi Sarcoma Treatment

Asking for a survivorship care plan

Talk with your treatment team about developing a survivorship care plan. This plan might include:

• A summary of your diagnosis, tests done, and treatment given
• A suggested schedule for follow-up exams and tests
• A schedule for other tests that might be needed in the future, such as early detection (screening) tests for other types of cancer or tests to look for long-term health effects from KS or its treatment
• A list of possible late or long-term side effects from treatment, including what to watch for and when to contact your doctor

Staying prepared and organized

Even if you’ve completed treatment, it’s still important to be organized and stay on top of your health. Keeping your records and health insurance coverage in order makes it easier to manage follow-up care, future checkups, and any new concerns that may come up.

Keep your health insurance

It’s very important to keep health insurance. It can help cover the cost of follow-up visits, tests, and any care you may need in the future.

Save your medical records

At some point, you may see a new doctor who doesn’t know your cancer history. Keep copies of your medical records (or have access to them) so you can easily share the details of your diagnosis and treatment when needed.

Can I lower my risk of Kaposi sarcoma progressing or coming back?

You might want to know if there are things you can do to lower your risk of KS lesions growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.

Adopting healthy behaviors

It’s not yet clear if there are things you can do that will help lower your risk of KS progressing or coming back.

• Adopting healthy behaviors like not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure.
• However, we do know that these types of changes can have positive effects on your health that extend beyond your risk of Kaposi sarcoma or other cancers.

Keeping your immune system healthy and preventing infections

It's very important to do what you can to keep your immune system healthy and to limit your risk of infection.

If you are HIV-positive, this means taking your antiviral medicines as prescribed. Talk with your health care team about vaccines and other steps you can take to help prevent infections.

About dietary supplements

So far, no dietary supplements have been shown to clearly help lower the risk of KS progressing or coming back. This includes vitamins, minerals, and herbal products. It doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

In the United States, dietary supplements aren’t regulated like medicines. They don’t have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do.

Talk to your health care team before taking any type of nutritional supplement. They can help you decide which ones are safe and which ones might be harmful.

If the KS progresses or comes back

If the KS progresses or comes back at some point, your treatment options will depend on:

• The location of the KS lesions
• What treatments you’ve had before
• Your overall health, preferences, and other factors

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when KS is a part of your life. Some people are affected more than others. But everyone can benefit from help and support, whether this is from friends and family, religious groups, support groups, professional counselors, or others.

Learn more in Life After Cancer.