Phantom Breast Pain and Other Symptoms

Phantom breast syndrome refers to sensations women may "feel" in their breast after a mastectomy or other breast surgery for breast cancer. This can include not only pain, but non-painful sensations such as itching, heaviness, and more.

While phantom breast syndrome is common, it is less talked about that many issues, and women do not often mention these symptoms to their doctors. We will look at the incidence of phantom breast syndrome, why it occurs, risk factors, and how it may be treated when painful.

Basics

There is relatively little research to date describing phantom breast syndrome. This is despite the thought that up to 90% of women experience long-term emotional and physical changes (including phantom breast pain) that can affect their quality of life.

Whether women fail to mention these sensations to their doctors because it is more minor than some other symptoms or because it feels strange to describe discomfort in tissue that is no longer there, it's important to know that phantom breast syndrome is both common and normal.

Prevalence and Timing

The prevalence of phantom breast syndrome (the sensation that a breast is still present after it is removed) varies between different studies, but is thought to occur in 10% to 55% of women following a mastectomy. Phantom breast pain and sensations usually begin within the first year following a mastectomy and often become less noticeable two years after surgery.

Phantom Breast Pain vs. Other Breast Pain

Some women experience only non-painful breast sensations whereas other women experience phantom breast pain with or without other sensations.

Chronic breast pain is common after breast cancer surgery, affecting up to 50% of women. Pain can stem from many causes including:

• Phantom breast pain (discussed here)
• Pain stemming from damage to the intercostobrachial nerves
• Pain due to neuromas (lumps of nerve tissue that can form after a nerve is damaged)
• Pain due to other nerve damage

Understanding the type of pain is important as chronic pain after breast cancer surgery can have a significant effect on quality of life. Fortunately, phantom breast pain is usually less severe than the phantom pain associated with amputation of a limb.

Phantom Breast Syndrome Symptoms

The symptoms experienced with phantom breast syndrome are similar to those experienced after amputation of an arm or a leg (but usually less painful). These may include:

• Pain
• Itching (though scratching doesn't help and this can be distressing)
• Tingling
• A pins and needles sensation
• Pressure or heaviness
• Burning
• Stabbing
• Throbbing
• Electric shock type sensations
• Premenstrual breast discomfort type of symptoms

The sensations may be felt all over the breast, just the nipple, or in localized sites.

In one study, half of the women felt sensations in their entire (but absent) breast, and for a large percentage of women, the experience had the same size, shape, and weight of their former breast.

Other research has found that phantom breast symptoms can be difficult to both describe and to explain where they are occurring spatially. Yet, while this is similar to phantom extremity symptoms, the symptoms appeared to cause less distress after a mastectomy than those associated with amputation of a limb.

Causes and Risk Factors

The mechanism behind phantom breast syndrome isn't entirely clear, but it's thought that phantom pain and other phantom breast sensations occur via different mechanisms (although both are often present). Both central nervous system (brain and spinal cord), and peripheral nervous system (damaged nerves) may play a role.

Damaged nerves (nerves cut during a mastectomy) may send an incorrect message to the brain, which is then interpreted abnormally. Or instead, without any input to the brain from the breast which has been removed, the brain may attribute messages coming from another area as coming from the breast.

Risk Factors

Some people are more likely to develop phantom breast syndrome than others. One of the earliest studies to evaluate phantom breast syndrome found that it was more common in younger, premenopausal women and in children who had more children.

A 2015 study also found the syndrome more common in younger women, as well as women who were more educated. Perhaps the strongest risk for developing phantom breast pain is the presence of breast pain prior to surgery.

Surprisingly, a different study found that phantom breast experiences were more common in women who had a mastectomy for ductal carcinoma in situ (DCIS) than in women who had the surgery for invasive breast cancers (stage 1 to stage 4 tumors) .

The development of phantom breast syndrome does not appear to correlate with the type of the tumor (ductal vs. lobular cancers), the size of the original tumor, whether lymph nodes were involved, whether the tumor was in the right or left breast, or whether or not reconstruction was performed.

Other treatments (such as radiation therapy) were likewise not associated with the occurrence of phantom breast sensations.

Diagnosis

The diagnosis of phantom breast sensations is primarily made by history, and by exclusion of other causes of pain. When evaluating possible phantom breast pain, other causes of pain should be ruled out, such as pain related to recurrence of the tumor, pain related to radiation fibrosis, pain related to chemotherapy neuropathy, musculoskeletal pain that may be helped by physical therapy, etc.

Treatments

There is not a lot of research into the best treatment options for uncomfortable phantom breast sensations and pain. A careful description of the type of pain you are experiencing can be very helpful, as different types of pain may respond to different types of therapy.

For example, neuropathic pain is often treated first line with anti-seizure medications or antidepressants (for their pain-relieving effect and not because physicians assume an underlying depression is present). Depending on the severity of discomfort and its impact on your life, your oncologist may recommend a pain consult.

Some of the different strategies that have been used (with or without evidence of benefit) include:

Oral Medications

Categories of medications that may be considered include:

• Opioids, while there is some evidence that opioids can cause changes in the brain that might alleviate phantom limb pain, their use for phantom breast pain is usually discouraged
• Anti-seizure drugs (anticonvulsants), such as Neurontin (gabapentin)
• Antidepressants, such as amitryptyline or Cymbalta (duloxetine)
• NMDA receptor antagonists, such as ketamine
• Mexitil (mexiletine), a medication ordinarily used for abnormal heart rhythms
• Others, including clonidine, calcitonin, and more

Topical Agents

Topical treatments have the advantage that they are usually associated with fewer side effects. Topical treatments that have been tried include:

• Topical lidocaine patches
• Capsaicin patches
• CBD oil

High dose capsaicin patches (8%) have been approved by the FDA for the treatment of chronic pain. When used for chronic pain associated with phantom limb pain, capsaicin patches have been found to significantly reduce pain, and fMRI scans have confirmed changes in the brain that correlate with this improvement.

Capsaicin 8% patches have also found to provide significant pain relief in people who are living with chemotherapy-induced peripheral neuropathy after breast cancer treatment.

With neuropathy, it's thought that the patches may actually lead to regeneration and restoration of the sensory nerve fibers responsible for symptoms, suggesting that the patches may be beneficial over the long term rather than just while they are being used.

It's important to note that capsaicin patches can be irritating to the skin at first, but this usually decreases with time.

Cannabinoids

Where legal, cannabinoids (THC or CBD) may be helpful for some people. Due to the legalities, however, fewer studies have been done relative to other therapies, and none specifically looking at the potential role in phantom breast pain.

Marijuana for medicinal purposes (medical marijuana) may be allowed in some states where recreational use is prohibited. Also, as noted, CBD oil may be used topically, and is available in some regions where other cannabinoids are not.

TENS Unit

Transcutaneous electrical nerve stimulation (TENS), while not studied widely in people who have phantom breast pain, appears to be helpful for post-mastectomy pain in general.

Counseling

Phantom breast syndrome can seriously affect a woman's quality of life through a combination of both the physical discomfort of the sensations and the emotional distress they cause. For this reason, working with a cancer counselor may be a very helpful adjunct to physical treatments for the disease.

Many oncologists believe that nearly anyone who is facing or has faced breast cancer could benefit from working with a therapist around the many issues that arise, and some studies (but not all) have even suggested that counseling and other forms of psychosocial support may have a survival benefit with breast cancer.

Complementary Alternative Therapies

There are no studies that have looked specifically at complementary and alternative therapies for phantom breast pain, but some of these treatments that have helped with at least some of the physical and emotional symptoms of cancer include:

• Acupuncture
• Massage
• Yoga
• Hypnosis
• Guided imagery/visualization
• Qigong
• Meditation
• Music therapy
• Art therapy
• Pet therapy

It's important to note that complementary therapies should be used as integrative therapies for people with cancer. In other words, they should not be used to treat cancer per se, but may be helpful when used along with conventional treatments for cancer.

Management of Other Types of Pain

Phantom breast pain may occur along with other late effects of breast cancer treatment, whether physical or emotional. Making certain that these other issues are appropriately treated is very important both in addressing phantom breast pain and in ensuring you have the best quality of life possible after your mastectomy.

This may include, for example, physical therapy to improve functional limitations related to your mastectomy (some breast cancer physical therapists believe all women should have this), addressing other long-term effects such as peripheral neuropathy, and sometimes working with a counselor to help you address your new normal after cancer. A good cancer rehabilitation program is equipped to help you address all of these issues.

Prevention

Little is known about how to prevent phantom breast syndrome, though it's known that ensuring adequate relief of acute pain following surgery may decrease the occurrence of chronic pain in the future.

A Word From Verywell

Many women hesitate to bring up phantom breast symptoms to their doctors, but it's important to share what you are feeling. These sensations are very common and normal, and addressing both the physical symptoms, and the emotional impact they have can help ensure you are living the best life possible after your mastectomy.