Understanding Kaposi Sarcoma

Being diagnosed with Kaposi sarcoma (KS) can feel overwhelming. Learning about the condition can help you better understand your diagnosis, treatment options, and ways to care for yourself throughout your journey.

Remember—you are not alone. Your healthcare team is there to help answer questions and support you every step of the way.

What Is Kaposi Sarcoma?

Kaposi sarcoma is a type of cancer that develops from cells that line blood vessels and lymph vessels. It most commonly affects the skin but can also involve the mouth, lymph nodes, digestive tract, or lungs.

Kaposi sarcoma is associated with infection by human herpesvirus 8 (HHV-8), also called Kaposi sarcoma-associated herpesvirus (KSHV). Not everyone who carries this virus develops Kaposi sarcoma. It is more likely to occur when the immune system is weakened.

Who Can Develop Kaposi Sarcoma?

Several forms of Kaposi sarcoma exist, including:

Classic Kaposi sarcoma, which most often affects older adults
Kaposi sarcoma related to weakened immune systems
Kaposi sarcoma associated with HIV infection
Kaposi sarcoma that develops after organ transplantation and the use of anti-rejection medications

Your healthcare provider can explain which type you have and what it means for your care.

Common Signs and Symptoms

Symptoms vary depending on where the cancer develops.

Skin symptoms may include:

Purple, red, brown, or dark-colored patches
Raised plaques or nodules
Skin lesions that slowly increase in size
Swelling of the legs or feet

If Kaposi sarcoma affects other parts of the body, symptoms may include:

Mouth sores or lesions
Abdominal discomfort
Diarrhea
Nausea and/or vomiting
Blood in the stool
Persistent cough
Shortness of breath or trouble breathing
Unexplained weight loss
Fatigue

Some people have very few symptoms, while others experience more widespread disease.

How Is Kaposi Sarcoma Diagnosed?

Your healthcare provider may recommend:

Physical examination
Skin biopsy
Blood tests
Imaging studies such as CT scans
Endoscopy or bronchoscopy if internal involvement is suspected

These tests help determine where the cancer is located and guide treatment decisions.

Treatment Options

Treatment depends on:

The type of Kaposi sarcoma
Where it is located
The number and size of lesions
Your overall health
Your immune system
Other medical conditions

Treatment may include:

Surgery
Topical medications
Radiation therapy
Topical medications

Chemotherapy
Immunotherapy
Compression stockings
Medications that strengthen immune function when appropriate
Other targeted treatments recommended by your oncology team

Your healthcare provider will recommend the treatment plan that is best for your individual situation.

What Is the Outlook?

The outlook varies depending on several factors, including:

The type of Kaposi sarcoma
How much of the body is affected
Overall health
Immune system function
Response to treatment
Other medical conditions

Some people experience slow-growing disease that remains stable for years, while others may require more intensive treatment. Your healthcare provider is the best person to discuss your individual outlook.

Living with Kaposi Sarcoma

Many people find it helpful to:

Keep all medical appointments
Take medications exactly as prescribed
Report new symptoms promptly
Eat a balanced diet to support overall health
Stay physically active as able
Get adequate rest
Accept help from family and friends when needed

Managing any other chronic health conditions you have can also support your overall health during treatment.

Caring for Your Skin

If you have skin lesions:

Keep the area clean and dry.
Avoid scratching or picking at lesions.
Protect your skin from injury.
Wear comfortable clothing that does not rub against affected areas.
Notify your healthcare provider if lesions begin bleeding, become painful, or show signs of infection.

Emotional Well-Being

A cancer diagnosis can affect emotional health as well as physical health.

It is common to experience:

Anxiety
Fear
Sadness
Frustration
Uncertainty

Talking with loved ones, joining a support group, or speaking with a counselor or social worker may help.

Remember that asking for emotional support is an important part of your care.

Questions to Ask Your Healthcare Team

You may wish to ask:

What type of Kaposi sarcoma do I have?
Has it spread beyond my skin?
What treatments do you recommend?
What side effects should I expect?
How will treatment affect my daily activities?
What symptoms should I report right away?
Are there lifestyle changes that may support my overall health?

Writing down questions before appointments can help you remember what you'd like to discuss.

When to Call Your Healthcare Provider

Contact your healthcare provider if you:

Notice new or rapidly growing skin lesions
Develop increased swelling in your legs, feet, or other areas
Experience persistent pain
Have lesions that bleed, drain, or appear infected
Have difficulty eating or swallowing
Develop a persistent cough or increasing shortness of breath
Notice blood in your stool or black, tarry stools
Experience unexplained weight loss
Develop fever, chills, or signs of infection
Have side effects from treatment that are difficult to manage

Prompt communication with your healthcare team can help address problems early.

Always ask your healthcare provider for specific advice on when to call to report symptoms, and when to seek urgent/emergency care.

When to Seek Emergency Medical Care

Call 911 or go to the nearest emergency department immediately if you experience:

Severe, or worsened, difficulty breathing
Chest pain
Coughing up large amounts of blood
Heavy or uncontrolled bleeding
Sudden confusion or difficulty waking up
Severe allergic reaction after treatment
High fever with shaking chills if your healthcare team has instructed you to seek emergency care

Key Takeaways

✓ Kaposi sarcoma is a cancer that affects blood vessel and lymph vessel cells.

✓ Treatment and outlook vary from person to person.

✓ Keep regular follow-up appointments and report new symptoms promptly.

✓ Taking care of your overall health—including nutrition, activity, sleep, and management of other chronic conditions—can support your well-being during treatment.

Medical Disclaimer

This resource is provided for educational and informational purposes only and is not intended to replace professional medical advice, diagnosis, or treatment. The information presented is general in nature and may not apply to every individual or health situation.

Individuals should consult their physician or other qualified healthcare professional for personalized medical advice, diagnosis, or treatment recommendations related to their specific health conditions and should not begin any new exercise program or change their diet or medications without consulting their healthcare professional.

Call 911 if you are experiencing a medical emergency.