Discomfort after a mastectomy is expected — tightness around the scar and aching pains as tissues heal — and typically eases after a few weeks.

But some MyBCTeam members have reported long-lasting pain affecting daily life. “My severe and exhausting chest pain has affected me every day since my double mastectomy four years ago. Am I the only one?” wrote one member.

Long-term pain may be caused by a condition called postmastectomy pain syndrome (PMPS). In this article, you’ll learn what causes PMPS, how to recognize it, and tips to help relieve symptoms.

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What Is PMPS?

PMPS is a type of nerve pain that develops after surgery to treat breast cancer and lasts more than three months after the surgery. Sometimes, nerves are cut while removing cancer in breast tissue. When nerves grow back, they may cause hyperalgesia, or abnormal sensitivity to pain.

This syndrome can appear after many types of surgery, especially if the cancerous tissue is in the upper outside part of the breast or under the arm. These surgeries include:

• Lumpectomy
• Breast reconstruction
• Axillary lymph node dissection
• Partial, segmental, or full mastectomies

Risk Factors of PMPS

Some people are at higher risk of developing PMPS. Risk factors include:

• Age — Younger people are more likely to develop the syndrome.
• Surgery location — Receiving full axillary lymph node dissection (ALND) places the axillary nerve (a key nerve in shoulder sensation and movement) at a higher risk for damage.
• Type of treatment — People who receive surgery and radiation therapy also have a higher chance of nerve damage.
• Medical history — Those with extra weight or a history of chronic pain, depression, or anxiety are more likely to have complications.

PMPS vs. Surgical Pain

Not all postsurgical pain is related to PMPS. Pain and discomfort are normal after surgery. Here’s how you can distinguish between regular surgical pain and PMPS.

• Time — Surgical pain improves with time. If pain doesn’t improve after three months, it’s considered long term and is more likely to be related to PMPS.
• Quality — Typical postsurgical pain is sharp and stabbing, especially around the scar. Nerve-related discomfort can feel similar but may also cause numbness or other unusual sensations, like itching.
• Sensitivity — Postsurgical pain may be worsened by expected painful movements, like reaching too fast or accidentally bumping into someone. PMPS-related pain can be extra sensitive to unexpected triggers, like a light breeze.

Other Causes of Postmastectomy Pain

Some people can develop nerve-related symptoms without having PMPS. If you have long-term pain or discomfort, your doctors may consider other causes, including:

• Phantom breast pain — Like phantom limb pain, this is a syndrome where you may feel like you still have a breast that’s causing pain even though it has been removed.
• Neuroma — A neuroma is a noncancerous, firm lump that can grow after surgery and irritate nearby nerves.
• Adhesive capsulitis — Also known as frozen shoulder, adhesive capsulitis is a common condition among people after breast surgery. It causes a painful, stiff shoulder joint that can mimic PMPS-related tightness and discomfort.
• Recurring cancer or metastasis — Some people who receive a mastectomy can have breast cancer recurrence, though it’s uncommon. Recurring cancer can cause a lump, scar tissue around the site of the surgery, inflamed or swollen skin, and breast pain.

How To Relieve Nerve Pain After Mastectomy

You can treat PMPS in several ways, but the best option depends on your symptoms, preference, and your doctor’s recommendation. Below are typical treatment options your doctor may suggest.

• Oral medication — Gabapentin and antiseizure medications are front-line options that can help decrease nerve-related pain. Alternative medications include serotonin-noradrenaline reuptake inhibitors or certain types of antidepressants.
• Topical medication — Capsaicin creams and topical lidocaine may help decrease pain.
• Physical therapy — A physical therapist can help restore trunk and arm mobility and strengthen surrounding areas.
• Cognitive behavioral therapy (CBT) — Mental health care can help you reduce stress or anxiety around pain and regain some control.
• Alternative therapies — Though there isn’t strong research supporting complementary treatments (sometimes known as integrative therapies), some people try acupuncture, music therapy, hypnosis, or massage alongside other management options.
• Nerve blocks — Those who haven’t responded to treatments above might choose to have a nerve block, which is often a localized shot with local anesthetic and anti-inflammatory medication. This shot numbs related nerves for pain relief.
• Pulsed radiofrequency — A procedure where electrical waves target related nerves to block pain signals and change how the nerve communicates with the brain.

Your care team may offer other procedures, like neuroma removal, depending on the source of your nerve pain. Talk to your doctor about the right treatment option for you.

Everyday Strategies for Pain Relief

Small adjustments to your daily routine can make a big difference to your symptoms. Consider the following habits to help prevent or manage pain. Talk to your care team for more specific advice relevant to your health needs.

• Try a mastectomy pillow — These pillows come in different shapes and sizes to help you position yourself more comfortably.
• Exercise regularly — Find an exercise you can do with less pain. Activities like walking and biking can help you take back some control over your body while protecting your overall well-being.
• Sleep well — Poor sleep can make pain feel worse. Practice good sleep hygiene by establishing a sleep schedule, making your bedroom cozy and cool, and avoiding caffeine in the afternoon.
• Reduce stress — Stress can increase how much pain you feel. Relaxation techniques such as meditation, breathing exercises, or journaling can help reduce stress.

One MyBCTeam member shared their day-to-day pain relief strategies. “Gabapentin helps me, but for some instant relief, I like to use Epsom salts in a hot bath,” they wrote.

Another shared that they found an effective stretching routine: “I do a round of my stretches about three times a week to keep my symptoms to a minimum.”

Talk to a Doctor

If you’re noticing constant pain, burning, or other unusual sensations lasting more than three months after your breast surgery, tell your doctor and ask about PMPS. They may have treatment options that can help.

PMPS symptoms can feel stubborn, but don’t lose hope. Some MyBCTeam members have reported improvements, though it may take some time as nerves heal and tissues recover.

Join the Conversation

On MyBCTeam, people share their experiences with breast cancer, get advice, and find support from others who understand.

What helps you manage postmastectomy pain syndrome symptoms? Let others know in the comments below.