How to Talk to Your Doctor About Metastatic Non-Small-Cell Lung Cancer Pain

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Pain is one of the most common side effects of metastatic non-small-cell lung cancer (NSCLC) and its treatment. When you have metastatic NSCLC, you may feel chest pain (often made worse with deep breathing, coughing, or laughing), bone pain in the back or hips, or pain as a result of nervous system changes, which may include headache, dizziness, balance issues, seizures, or numbness in limbs as the cancer spreads to the brain or spinal cord.

The good news: The vast majority of cancer-related pain can be treated or managed, which is why it’s important to discuss your pain with your doctor. But having that conversation isn’t always easy. You may think that pain is a normal part of living with cancer, or worry you sound like a complainer, or just feel like you have to tough it out.

Guilt or stigma may also stop people with NSCLC from seeking help for their pain. While it is possible to develop lung cancer as a nonsmoker, about 60 to 70 percent of people who have lung cancer are smokers, says Benson Chen, MD, a pulmonary and critical care specialist based in San Francisco. Many of these people live with guilt. “I can’t tell you how many lung cancer survivors I’ve talked to who just feel so embarrassed that they’re even asking for help when they feel this is something they brought on themselves,” he says. And the stigma doesn’t help. “You hear people say ‘Oh well, you smoked,’ almost like it’s the patient's fault.”

Talking to Your Doctor About Pain

If you’re experiencing pain due to metastatic NSCLC, it’s important to speak up. Follow these steps to start the conversation:

1. Discuss pain at every appointment. Reporting pain doesn’t count as complaining, and you don’t have to deal with pain just because you have metastatic NSCLC.

Pain is a measure only you can provide. “Caregivers can measure a lot of things — we can measure blood pressure, we can measure heart rate — but pain is really subjective. So we measure where and when it hurts by asking,” says Catherine Credeur, LMSW, an oncology social worker at UT Southwestern Medical Center at Dallas and the past president of the Association of Oncology Social Work.

Be sure to tell your doctor about where your pain is coming from, how bad it is, and what exactly it feels like. This information can help your care team find any potential underlying issue that needs to be treated, or identify whether or not the cancer is spreading. It’s especially important to discuss any new or worsening pain you’re feeling, so that you and your doctor can alter your treatment plan as needed.

2. Be as specific as possible. A key way doctors know how to treat pain is based on the description you use. When you talk to your care team about the pain you’re experiencing, they’ll try to understand why the pain is there. “If the pain is something that is appropriate to be treated with pain-relieving medications, then that’s what we’ll do,” says Dr. Chen. “But if the pain is a result of the cancer causing nerve compression, for example, then direct treatment of the tumor is the right way to alleviate the pain.”

In addition to using terms like “sharp” and “dull” to characterize pain, it’s important to consider the time of day and what activities you’re doing when it starts, says Anjali Sibley MD, MPH, a hematologist and medical oncologist based in the San Francisco Bay area. “Sometimes drawing a picture of the body with designated spots where pain is located can be helpful. Writing symptoms down as they occur can also help.”

3. Establish a pain scale and discuss treatment options. It’s important to establish a difference between pain that is tolerable compared to intolerable pain. Recognizing the difference and communicating with your doctor is key.

Fear of addiction to pain medication — or side effects — is not a reason to avoid treatment for pain that is intolerable. “Pain medications come with side effects: They can slow down your bowels, trigger nausea, and even require increased doses over time. But if the pain is intolerable, it needs to be treated,” Chen says. “The objective is to make sure you don’t suffer or become unable to function because of your pain.” If your current pain relief methods aren’t working, ask for more help.

“It's also very important to let your doctor know about medications and herbal supplements you may be taking for pain management, so we can monitor for side effects,” Dr. Sibley adds.

4. Consider palliative care. Your doctor may discuss palliative care, a specialized form of medical care specifically designed for people who have a serious illness such as metastatic NSCLC. A palliative care team consists of a group of specially trained doctors, nurses, social workers, and other specialists who act as your support team through your metastatic NSCLC treatment.

The goal of palliative care is to help reduce pain and stress associated with NSCLC, help you understand your treatment options, and help improve your quality of life.

It’s important to know that palliative care is not a last resort. It is a resource that can be used in conjunction with your medical treatment to help you cope.

5. Discuss complementary treatment approaches. Ask your doctor if you may benefit from any complementary approaches to help relieve pain and other side effects of metastatic NSCLC. This may include acupuncture, or even alterations to your diet. Just remember that these are meant to be in addition to your treatment plan — not a replacement. Discuss which types of approaches may be safe for you to try.


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