If you’ve recently been diagnosed with a Pancoast tumor, you may be wondering what this means for your treatment plan and prognosis (outlook). These are rare lung cancer tumors that can be harder to diagnose and treat than other types. While this can sound alarming, doctors are constantly learning more about better ways to manage these lung cancers.

In this article, we’ll cover what Pancoast tumors are, common symptoms you may experience, and how they’re treated. We’ll also discuss the prognosis of these rare lung cancer tumors. To learn more about your specific case or treatment plan, talk to your oncologist (cancer specialist) or cancer care team.

1. Pancoast Tumors Develop in the Top of the Lung

Pancoast tumors are a specific lung cancer tumor that develops in the apex (top part) of the lung. Also known as “superior sulcus tumor” or “superior pulmonary sulcus tumor,” Pancoast tumors typically form in the groove created by the large blood vessel that runs underneath the collarbone. A tumor is truly considered a Pancoast tumor only if it’s located above the first rib.

Other important structures around the apex of the lung include:

• The brachial plexus (a bundle of nerves that runs from the spinal cord to the arms, chest, and neck)
• The ribs
• Blood vessels
• The spine
• The pleura (thin tissue lining covering the chest cavity)

This means that Pancoast tumors typically cause a host of symptoms not seen with other lung cancers.

2. Pancoast Tumors Are a Less-Common Type of NSCLC

Lung cancers are typically defined by the types of cells in which they develop. More than 95 percent of Pancoast tumors are non-small cell lung cancer (NSCLC) — the most common type of lung cancer. Specifically, they’re known as adenocarcinomas. This means that Pancoast tumors typically form in gland cells, which are responsible for making the thick, sticky mucus that lines your airways.

Overall, around 3 percent to 5 percent of lung cancer cases are Pancoast tumors. Since they’re so rare, doctors may have a harder time properly diagnosing and treating them. It’s important to find an oncologist who specializes in treating lung cancers.

3. Pancoast Syndrome May Include Shoulder Pain, Hand Problems

People with Pancoast tumors may experience different symptoms compared to those with other types of lung cancer. This is because the tumor can press on nerves and blood vessels in the upper chest. Pancoast tumors generally don’t cause any shortness of breath or coughing.

Instead, common symptoms of Pancoast tumors — collectively known as Pancoast syndrome, a complication of lung cancer — include:

• Severe pain affecting the shoulder and scapula (shoulder blade)
• Muscle weakness and wasting of the arms and hands
• Swelling of the upper arm
• Numbness or tingling in the hands and fingers
• Neck pain
• Rib and chest pain
• Unexplained weight loss

Horner syndrome is caused by damage to the neurons (nerve cells) that extend from the spinal cord to the upper chest and side of the neck. According to the Cleveland Clinic, up to half of people with Pancoast tumors develop Horner syndrome. When a tumor presses on or damages these nerves, it can lead to:

• Anhidrosis — Little to no sweating along the side of the face
• Ptosis — A drooping upper eyelid
• Small pupils (the black centers of the eyes)
• Pupils not properly dilating (shrink to adjust to low light), making it harder to see
• Noticeable difference between the size of one’s pupils

Most of the symptoms of Horner syndrome occur on just one side of the face. Fortunately, most of these symptoms usually resolve once the Pancoast tumor is treated.

4. You May Need an MRI To Diagnose Pancoast Tumors

If you’ve been experiencing any lung cancer or Pancoast tumor symptoms, your doctor may order several tests. Imaging tests usually include a chest X-ray or CT scan to take pictures of your lungs. If your doctor finds a tumor or a suspicious spot, they’ll want to use additional tests.

One test that helps confirm a Pancoast tumor diagnosis is a percutaneous needle biopsy (PCNB). A PCNB procedure entails removing a tissue sample for study using a thin needle inserted through the skin. The radiologist will use a CT scan to guide the needle to the suspected tumor.

MRI uses powerful magnets and radio waves to create extremely detailed images. Your doctor can use an MRI to look at blood vessels and nerves near a Pancoast tumor. This is important, as many of these structures are found near the top of the lung.

5. Surgery for Pancoast Tumors May Be Complicated

Since Pancoast tumors develop near other bodily structures, treatment can be difficult. Your cancer care team will work together to find the best treatment plan possible.

Treatment Before Surgery

Your doctor may not be able to remove the tumor with surgery if it’s grown around blood vessels, nerves, or into the chest wall. They may use chemoradiation — a combination of chemotherapy and radiotherapy (radiation therapy) to shrink the tumor. This makes it easier to remove completely with surgery later on, but some people won’t need surgery after chemoradiation

Most people receive two or three cycles of chemotherapy and six weeks of radiation therapy. The Moffitt Cancer Center notes that up to three-quarters of people with Pancoast tumors who are treated with chemoradiation can then have surgery.

Another treatment option before surgery for Pancoast tumors is chemoimmunotherapy. This approach uses chemotherapy and immunotherapy to shrink tumors. Immunotherapy uses drugs that activate the body’s immune system to destroy cancer cells.

Pancoast Tumor Surgery

Thoracic surgeons are specialists who operate on the chest and lungs. They’re specially trained to remove complex tumors — like Pancoast tumors — that may be surrounded by other bodily structures. During surgery for a Pancoast tumor, your surgeon will likely remove:

• The top two ribs
• The upper lung lobe containing the tumor
• Any other nearby structures affected by the tumor

In some cases, the surgeon may need to also remove a large blood vessel underneath the collarbone. They will replace it with a graft or tube for blood to flow through.

6. Prognosis Is Improving for People With Pancoast Tumors

According to the Cleveland Clinic, survival rates with Pancoast tumors have continued improving over the years. This means people are living longer, healthier lives with Pancoast tumors than before. People with early-stage tumors have a five-year survival rate of around 30 percent to 50 percent. This means that up to 50 percent of those with an early-stage Pancoast tumor are alive after five years.

Certain factors can affect your prognosis with a Pancoast tumor. For example, studies have found that you may have a worse outlook if the cancer has:

• Spread to nearby lymph nodes (immune system structures)
• Damaged nerves in the brachial plexus
• Interfered with blood vessel function

However, other factors improve your chances of survival with a Pancoast tumor. They include:

• Receiving treatment with chemotherapy and/or radiation therapy before surgery
• Undergoing successful resection (removal) of the entire tumor
• Having very few Pancoast tumor symptoms
• Having early-stage cancer that hasn’t spread to nearby structures or other parts of the body

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Are you living with a Pancoast tumor? What symptoms have you experienced? How did your doctor treat your lung cancer? Share your experience in the comments below, or start a conversation by posting on your Activities page.