Superior Vena Cava Syndrome and Cancer

Call emergency services 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.

Call your cancer team the same day 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.

Say "I have cancer and my face and neck are swelling, and I am short of breath." That sentence gets the right response.

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. A blood clot from a catheter or pacemaker wire can cause it without any cancer at all.

Swelling happens because blood coming back from your head, neck and arms cannot get past the blockage easily. It backs up. That is why the puffiness shows in your face first, and why it is often worst first thing in the morning or when you bend forward.

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.

This varies by situation, and that variation matters. 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. A gradual, mild case is often worked up over a short period with imaging. It is not always treated as an instant crisis. Rapid or severe symptoms are different. 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, MRI, or ultrasound. Treatment depends on the cause. Some cancers usually respond well to drug treatment, such as small cell lung cancer and lymphoma. For these, chemotherapy can shrink the blockage. 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 hold the vein open and restore blood flow quickly. 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 underlying cause is treated. These include keeping your head raised and, sometimes, steroid medicines. Ask whether either is part of your plan.

• Use your care team's urgent instructions 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 emergency services 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 an urgent same-day call. One is what needs emergency services. 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: the diagnosis, recent treatments and their dates, current medicines and last doses, allergies, and devices. Add recent laboratory or imaging results, a timeline of your symptoms, and any measurements your team has asked you to take. Add your location, a transport plan, and advance directives too. 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 local emergency services instead. Describe the swelling, the breathing change, and how fast it came on.

• National Cancer Institute — Cardiopulmonary Syndromes (PDQ)