How Do You Break Down Lung Cancer Diagnosis to New Patients?

How Do You Break Down Lung Cancer Diagnosis to New Patients? from Patient Empowerment Network on Vimeo.

How might a lung cancer diagnosis be explained to new patients? Expert Dr. Lecia Sequist from Massachusetts General Hospital shares how she breaks down the the tests involved in non-small cell lung cancer (NSCLC) diagnosis and treatment, advice to patients, and best practices she’s learned in communicating information to patients.

Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.

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“We know that not all patients are offered genetic testing. And if you have a diagnosis of non-small cell lung cancer, or especially the most common subtype of that called adenocarcinoma, genetic testing is most likely an important part of figuring out your treatment. So be sure to ask your doctor if that’s been done and if it hasn’t, should it be done.”

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Transcript:

Lisa Hatfield:

Dr. Sequist, you have a new patient coming into your office just diagnosed with non-small cell lung cancer. How do you explain to that patient? I’m sure they’re wide-eyed and fearful and afraid. How do you explain to the layperson what that is and then the subsequent treatment that they might be experiencing in the coming months with a new diagnosis?

Dr. Lecia Sequist:

Yeah, this is a very confusing time for most patients because they’re trying to wrap their head around what’s going on. They’re usually being fed information at such a rate. It’s like drinking from a fire hose, and it’s hard to take it all in. On top of that, they may not be feeling well physically. So I think it is important to repeat things, to pause a lot, to ask if there are questions, and to give people an opportunity to get back in touch with you with questions later, because, of course, it’s happened to all of us. As soon as we walk out of the doctor’s office, that’s when the question pops into our brain. But non-small cell lung cancer, it’s a very common cancer. And it basically is a type of cancer that starts in the lung, but it can spread to other parts of the body.

And some of the most important pieces of information that your doctor will need to help figure out a treatment plan along with you is to get a biopsy to confirm that the diagnosis is what they think it is. And that is usually an invasive procedure where a small piece of the cancer is removed from the body so that you can look at it under the microscope, and they can confirm that it’s that type of lung cancer. And then probably a series of scans or radiology tests where they’re looking at different parts of the body, maybe with different lenses such as a CAT scan or a PET scan or an MRI. Those are just different types of radiology exams to see if the cancer might have spread to any of the different places.

And for lung cancer, we usually try to look head to toe, essentially look at the whole body and get a complete picture of what’s going on. And the third important thing that doctors will need to come up with a treatment plan is to do something called genetic testing. This can be confusing for people because we’re not looking at their family. We’re not looking for genes that could have come from their parents or have been passed on to their children. We’re really looking at the genes of the cancer. And together looking at the biopsy, the genes that are activated within the cancer, if any, and where the cancer might be in the body, that helps the doctors put together a treatment plan of how to attack the cancer.

Lisa Hatfield:

Great. Thank you. Do you have any tips specifically for patients when they’re first diagnosed?

Dr. Lecia Sequist:

Yeah. My activation tip for someone with newly diagnosed lung cancer would be to make sure that they’re asking their doctor if genetic testing should be done on their cancer. We know that not all patients are offered genetic testing. And if you have a diagnosis of non-small cell lung cancer, or especially the most common subtype of that called adenocarcinoma, genetic testing is most likely an important part of figuring out your treatment. So be sure to ask your doctor if that’s been done and if it hasn’t, should it be done. 


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Lung Cancer and Shoulder Pain

Editor’s Note: This resource, Lung Cancer and Shoulder Pain, was originally published by MyHealthTeam.


There are many causes of shoulder pain. In some cases, it could be the sign of an orthopedic condition (for example, a rotator cuff injury). But shoulder pain is also a possible indicator of lung cancer, according to experts at the Moffitt Cancer Center.

If you are experiencing long-term shoulder pain, you may want to consider if you have any others symptoms that could be associated with lung cancer. Other common symptoms include respiratory issues (hoarseness, coughing up blood, and shortness of breath) and irregular head, back, or chest pain. Even if you don’t have other symptoms, you should nevertheless reach out to a medical professional if you have shoulder pain that persists for longer than a few days.

What Causes Shoulder Pain in Lung Cancer?

As lung cancer progresses, two possible developments may produce shoulder pain: lung tumors and malignant pleural mesothelioma (MPM).

Lung Tumors

When a lung tumor grows in size, it begins to compete for space against the surrounding bones, tissues, and nerves. Pain may develop depending on the tumor’s location and the pressure it is exerting. If a particular nerve is compressed, your body can signal the presence of the lung tumor through referred shoulder pain. You can think about this shoulder pain as an alarm signaling something irregular happening in the body.

Pancoast Tumor

Although it only occurs in 3 percent to 5 percent of all cases of lung cancer, a Pancoast tumor (also called a superior sulcus tumor) is a rare form of non-small cell lung cancer that originates at the topmost part of the lungs. Pancoast tumors usually do not cause respiratory issues typical of other lung cancers. Instead, they expand upward from the top of the lung and begin to hinder the nerves around the shoulders and shoulder blades, causing sharp shoulder pain, among other symptoms. Depending on the Pancoast tumor location, different areas can experience pain.

About 25 percent of people with Pancoast tumors experience a set of conditions referred to as Pancoast syndrome. As the Pancoast tumor continues to enlarge, more of the surrounding nerves become impaired, which may cause disruptions in the sympathetic nervous system (in the case of lung cancer, second-order neurons). This nerve damage can also result in Horner’s syndrome — a condition that can cause decreased pupil size, drooping eyelids, and an inability to sweat. Typically, these symptoms appear on only one side of the face.

Malignant Pleural Mesothelioma

In one study, researchers found that 14.3 percent of people diagnosed with MPM — a form of cancer caused by exposure to asbestos — cited shoulder pain as their first symptom. MPM attacks the pleura (lining of the lungs) rather than the structure of the lung itself. As tumors develop on the pleura, they begin to apply pressure on the chest cavity that can cause pain in the shoulders.

Metastatic Lung Cancer

In people with metastatic lung cancer (advanced lung cancer), the cancer cells from the primary tumor spread out toward neighboring parts of the body. In most cases, lung cancer cells enter the surrounding bones in a process called bone metastasis. As cancer cells begin to invade the bone, they alter its structure. Small holes, called lytic lesions, then develop on the affected bones, which can cause severe pain in the shoulders, back, and chest.

Most of the physical symptoms of lung cancer do not surface until the tumor metastasizes. However, researchers are working every day to find new methods of early detection. By better understanding the causal link between lung cancer and shoulder pain, it may be possible to discover lung cancer in its early stages.

What Does Shoulder Pain in Lung Cancer Feel Like?

Because lung cancer tumors manifest in many different forms and locations, it is difficult to put a general description on the shoulder pain caused by lung cancer. It’s similar in intensity to the pain caused by a condition like arthritis, but there are a few differentiating characteristics.

In most cases, shoulder pain in lung cancer is more prevalent when a person is lying down or resting. It doesn’t typically inhibit movement in the arms as arthritis can. Some people have also noted that they experience a tingling sensation racing down their arms alongside shoulder pain, signifying nerve involvement.

Managing Shoulder Pain With Lung Cancer

Managing symptoms like shoulder pain often starts with treating the lung cancer itself. If this does not relieve your acute pain, your oncologist or health care team may recommend other options (such as over-the-counter or prescription pain relievers).

As with any new or worsened symptoms, contact your health care team if you start experiencing shoulder pain. Make sure to reach out if this pain is causing sleep disruptions or hindering your everyday life.

Treating Lung Cancer

Treating the underlying cancer may help manage symptoms like shoulder pain. One member of MyLungCancerTeam says that they “had a lot of shoulder, arm, and between-the-shoulder pain” right before their diagnosis but added, “after chemo, it went away.” In the case of an intruding lung tumor, for example, once it diminishes in size, the pressure it was applying on the surrounding nerves will go away as well.

The type of lung cancer treatment an oncology specialist recommends depends on the stage and the type of lung cancer you have. In the early stages of lung cancer, it may be possible to remove the tumor surgically. If the tumor has begun to spread, your doctors may suggest chemotherapy or radiation therapy sessions.

Pain Management

There are several methods of alleviating shoulder pain during treatment to help you manage discomfort in day-to-day life.

Medication for Pain Relief

Over-the-counter pain relievers, like nonsteroidal anti-inflammatory drugs (NSAIDs) or acetaminophen, may help mitigate mild or moderate shoulder pain caused by lung cancer. Talk with your health care team to understand what pain relief medications you can take with your cancer treatment.

For more severe shoulder pain, your doctor may prescribe stronger medications, including morphine or other opioids.

Hot and Cold Treatments

Ice therapy is mainly used to treat swelling and inflammation, and heat therapy reduces tension and increases flexibility. If your shoulder pain arrives immediately without warning, try to use cold therapy. Penn Medicine recommends applying ice for 15 minutes and then leaving the area bare for another 15 minutes. If the pain continues for longer than 72 hours, try to apply heat. Another member of MyLungCancerTeam rests “with heat on their shoulder.”

Meet Your Team

Living with lung cancer can be a challenge — but you’re not alone. There are others experiencing life with lung cancer who are here to support you. MyLungCancerTeam is the social network for people with lung cancer and their loved ones. Here, you can ask questions, share advice, and learn about the experiences of those managing day-to-day life with their diagnosis.

Have you experienced shoulder pain during your diagnosis? How have you learned to manage it? Share your story by posting on MyLungCancerTeam.

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