Superior Vena Cava Syndrome and Cancer

This page is for people with cancer who notice swelling in the face, neck, or arms, or new trouble breathing. It explains superior vena cava syndrome, when to get help, and how it is treated.

Call 911 or go to the nearest emergency department if any of these start:

• Severe trouble breathing, or breathlessness that is getting worse fast.
• Noisy breathing, or a feeling that your throat is closing.
• Fainting, near-fainting, or new confusion.
• Sudden, marked swelling of the face and neck with breathing trouble.
• Chest pain.
• Coughing up blood.

Call your cancer team right away, day or night, if:

• Your face, neck, arms or upper chest are newly puffy or swollen.
• Your collar, rings or watch have become tight over days.
• You have a new cough, a hoarse voice, or trouble swallowing.
• Veins stand out on your chest or neck.
• Symptoms get worse when you lie flat or bend forward.

Tell them about your cancer diagnosis, describe the swelling, and say if you are short of breath. If you cannot reach your team, go to the nearest emergency department.

The superior vena cava is the large vein that carries blood from your upper body back to your heart. Superior vena cava syndrome happens when this vein becomes partly blocked. The National Cancer Institute lists lung cancer and non-Hodgkin lymphoma as the most common cancer-related causes. Breast cancer, germ cell tumors, and other cancers can cause it too. NCI says it is usually caused by cancer. Less common causes include a blood clot from a catheter or pacemaker wires, infection, and some other conditions.

Because the vein carries blood from your upper body back to your heart, the signs show up in your face, neck, upper body, and arms. NCI says the signs are more severe if the vein is blocked quickly.

Other things can cause facial swelling. Only your team can say what is happening in your case, so report it rather than guess.

The National Cancer Institute lists trouble breathing, coughing, and swelling in the face, neck, upper body, or arms as common signs. Less common signs include a hoarse voice, trouble swallowing, and coughing up blood. Swollen veins visible on the chest or neck, chest pain, and rapid breathing can also occur.

The National Cancer Institute notes that for adults, waiting to start treatment while a diagnosis is made usually causes no problem, provided the airway and the brain are not affected. Those two are the exceptions. That is a point about treatment timing once a team is involved. It is not a reason to wait before you report swelling or breathing changes. NCI also says signs are more severe when the vein is blocked quickly. Severe breathing difficulty, fainting, and confusion are emergencies. So is any sign of immediate danger. These are not situations to monitor at home.

Doctors use imaging to find and measure the blockage. This can include a chest x-ray, CT scan, venography (an x-ray of the veins using dye), MRI, or ultrasound.

Treatment depends on the cause:

• Chemotherapy is the usual treatment for tumors that respond to anticancer drugs, including small cell lung cancer and lymphoma.
• Radiation therapy is used for tumors less likely to respond to chemotherapy alone.
• A stent is a small tube placed inside the vein. It can help keep the vein open so blood can pass. NCI says it helps most people.
• Clot treatment. If a blood clot is the cause, treatment may include clot-dissolving medicine or a procedure to remove it.
• Supportive measures can ease symptoms while the cause is treated. These include keeping your upper body raised higher than your lower body and, sometimes, steroid medicines. Ask whether either is part of your plan.

• Call your care team right away for new facial or upper-body swelling, or for breathing changes.
• Tell them whether your symptoms get worse when you lie down or bend forward.
• Do not start diuretics, steroids, or blood thinners unless prescribed.
• Call 911 for severe breathing difficulty, fainting, confusion, or any sign of immediate danger.

Ask your team to write down three separate levels. One is what can wait for a routine visit. One is what needs a call right away. One is what needs a 911 call. Write down the exact phone number for each. Keep the list somewhere you can find it in a hurry.

Keep these together in one place:

• Your diagnosis.
• Recent treatments and their dates.
• Current medicines and last doses.
• Allergies and any devices you have.
• Recent lab or imaging results.
• A timeline of your symptoms, and any measurements your team has asked you to take.
• Your location and a transport plan.
• Advance directives (written wishes about your care).

Having this ready before you call saves time when time matters.

Do not use this page to change medicines, oxygen settings, tube or drain settings, food or fluid restrictions, activity levels, or treatment. Do not wait for a reply to a portal message when someone may be in immediate danger. Call 911 instead. Describe the swelling, the breathing change, and how fast it came on.

• National Cancer Institute — Cardiopulmonary Syndromes (PDQ)