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Postmastectomy Pain Syndrome: What You Should Know

Postmastectomy pain syndrome

It’s not unusual to have pain and discomfort following any type of surgery, including a mastectomy.

Most women have some level of pain in the days and weeks after having breast surgery. Many continue to have strange sensations for months or even years. When pain lingers for more than a few months and starts to impact quality of life, it’s called postmastectomy pain syndrome.

This type of chronic pain can happen after radical mastectomy, modified radical mastectomy, and breast-conserving surgery, which is known as a lumpectomy.

Read on for information about treatment and management of postmastectomy pain syndrome.

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Symptoms

What are the symptoms of postmastectomy pain syndrome?

If you have postmastectomy pain syndrome, you might have persistent or intermittent pain in your:

  • chest
  • armpit
  • arm
  • shoulder

In addition to pain, you may also experience some of these symptoms:

  • numbness
  • tingling
  • severe itching that can’t be relieved by rubbing or scratching
  • a burning sensation
  • increased sensitivity to pain, or hyperalgesia
  • a shooting pain
  • phantom breast pain

Having chronic pain can lead to other health problems.

For example, arm or shoulder pain could force you to favor one arm even if you’re unaware that you’re doing it. This can lead to frozen shoulder syndrome. It can also increase the risk of developing lymphedema, a condition in which lymphatic fluid fails to drain properly. The buildup of fluid can cause your arm to swell.

Persistent pain can also lead to insomnia, leaving you exhausted and more susceptible to illness.

Causes

Why does this happen?

It’s unclear why this happens to some women but not to others.

During a mastectomy, some of the nerves in the chest must be severed. It’s likely that postmastectomy pain syndrome is the result of nerve damage.

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Risk factors

Who is most likely to get this?

Between 20 and 30 percent of women who have breast surgery develop postmastectomy pain syndrome.

It’s more likely to occur in women who:

  • had a full axillary lymph node dissection as opposed to a sentinel lymph node biopsy
  • received radiation treatment
  • had chemotherapy
  • had hormone therapy

Caucasian women are at lower risk for postmastectomy pain syndrome than women of other races.

Diagnosis

Should I see my doctor?

Ongoing pain or discomfort after mastectomy doesn’t mean that cancer has returned or that something went wrong during surgery. You shouldn’t have to wonder, though. If you have pain or other symptoms that aren’t getting better, it’s a good idea to see your doctor about it. Your doctor will probably begin by examining the surgical area to make sure you’re healing properly.

When pain involves the arm or shoulder, your doctor can check to make sure you’re not developing any limitations in movement or range of motion. If your ability to move your arm or shoulder is limited, over time it can become more difficult and more painful to move that shoulder. This can lead to frozen shoulder.

Your doctor might also want to evaluate you for lymphedema, which is a potential side effect of mastectomy and lymph node removal. A blocked lymph system prevents drainage and causes fluids to build up. This can lead to swelling in the chest or arms. Your doctor can make this diagnosis based on your symptoms and their physical exam findings.

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Treatments

How is this treated?

First, your doctor will try to figure out where the pain comes from.

For shoulder problems, a series of daily range-of-motion exercises can improve flexibility and reduce shoulder pain. Working with a physical therapist may be helpful. If you develop frozen shoulder, your doctor may also refer you to an orthopedist.

No cure for lymphedema is available, but special exercises and massage can help the flow of lymph fluid and help treat it.

Another treatment for lymphedema is compression, which helps to move lymph fluid. There are two ways to have compression therapy. One is with a pneumatic compression sleeve that’s connected to a pump to create intermittent pressure. The other is to wear a specially fitted compression sleeve.

For pain due to skin inflammation, try a topical pain reliever, such as capsaicin (Qutenza, Theragen, Rezil), in the form of lotions, creams, or gels. If you’re receiving radiation treatment, ask your radiation oncologist for skin care tips.

You can treat nerve pain with over-the-counter pain relievers. If that doesn’t work, stronger prescription pain medications may be helpful.

A 2014 study found that a stellate ganglion block along with ketamine successfully decreased pain after mastectomy. It also improved range of motion in the shoulder. This decreased the need for analgesic medications. A stellate ganglion block is a local anesthetic your doctor can inject into nerve tissue in the neck. It usually takes a series of injections to effectively treat the pain.

Chronic pain usually requires a multipronged approach. Alternative or complementary therapies that may prove beneficial include:

  • acupressure
  • acupuncture
  • massage
  • relaxation exercises
  • transcutaneous nerve stimulation

Maintaining your overall health will aid in your ability to manage pain. This is why it’s important to maintain a nutritious diet and exercise regularly. This will also help you to sleep better at night.

Tell your doctor if you have insomnia due to chronic pain.

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Outlook

What is the long-term outlook?

Every person’s situation is different. Your overall health, age, and lifestyle all affect chronic pain due to mastectomy.

Postmastectomy pain syndrome can be managed. Work with your doctor to find the pain control therapies that work best for you.

It may also help to network with others who’ve had breast cancer or chronic pain. For more information about support groups in your area, contact the American Cancer Society or the American Chronic Pain Association.

Connect with our breast cancer Facebook community for trustworthy answers and warm support »

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Tips

Postmastectomy tips

After a mastectomy, it’s important to follow your surgeon’s postoperative instructions and report side effects. Here are a few other things to keep in mind:

Wearing a breast prosthesis too soon can be painful

Whether you’re in the process of reconstruction or not, you may be tempted to wear a bra or breast prosthesis too soon. This can be uncomfortable or even painful. Your chest needs time to heal, and your skin will be tender for several weeks. Your skin may be even more sensitive if you also have radiation therapy to the chest.

You’ll be able to wear a bra and a lightweight foam breast before transitioning to a prosthetic breast. Follow your surgeon’s advice on when to make these changes.

You need to massage the scar area

Once the bandages are off and the postsurgical drains are removed, your surgeon will advise you on how to massage your chest in the scar area. This helps to soften adhesions that can cause pain. Gentle rubbing every day also helps to desensitize tender areas.

Movement is helpful

It can be hard to think about movement when you’re in pain, but it’s important to continue moving your arms and shoulders. Make it a point to stretch and rotate your arms several times a day. This will help maintain flexibility and prevent stiffness.

Your routine can wait

It may be tempting to try to return to your usual routine too quickly after a mastectomy. But it’s very important to give your body time to rest and recover. Rushing the process can set you back and make recovery time longer.

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