Living with Post-Mastectomy Pain Syndrome

Breast cancer is the second most common form of cancer among women in the U.S., affecting hundreds of thousands annually. In 2017, more than 250,000 new cases of breast cancer were reported in the U.S., up from 197,000 in 2000. The total number of breast cancer cases has increased over the past two decades, but the incidence rate has declined slightly from 133 per 100,000 women in 2000 to 125 per 100,000 in 2017.

Many women who are diagnosed with early-stage breast cancer choose to undergo a mastectomy which is a procedure to remove the entire breast. While this can lower the chances of the breast cancer returning, there can be some negative outcomes including post-mastectomy pain syndrome.

The Horrifying Reality of Breast Cancer

For many people, the prospect of developing breast cancer is terrifying. About 1 in 8 American women will develop breast cancer at some point in their lives, and about 1 in 883 men will develop breast cancer. In the U.S., about 42,000 women will die from breast cancer in 2020, making breast cancer the most lethal form of cancer for women except lung cancer.

There is a strong genetic component to breast cancer. If you have a mother, sister or daughter that has been diagnosed with breast cancer, then your risk doubles. However, you should know that 85 percent of all breast cancer cases occur in women with no family history of breast cancer. In most such cases, it is believed that age-related genetic mutations give rise to breast cancer.

The survival rate is quite high among patients diagnosed with breast cancer. The 5-year survival rate among patients diagnosed with non-metastatic breast cancer is 91 percent, and this rises to 99 percent if the cancer is localized to the breast. The 10-year survival rate among patients with invasive breast cancer is 84 percent.

The Benefits and Disadvantages of a Mastectomy

A mastectomy which removes all of the breast tissue including nipple, areola and lymph nodes is a common treatment option for breast cancer. It is also a common prophylactic option for people who are at high risk of developing breast cancer. More than 100,000 women in the U.S. undergo a single or double mastectomy every year.

Your oncologist is likely to recommend a mastectomy if your cancer has one or more of the following characteristics:

  • The tumor is large
  • The tumor is in the center of your breast
  • More than one tumor is present
  • You have undergone radiotherapy before

You and your medical team may prefer a mastectomy because

  • There is less risk of the cancer returning
  • You can avoid another bout of radiation therapy
  • If the cancer does return, you have radiation therapy available to you

There are some downsides to a mastectomy, including

  • Complete removal of your breast
  • A breast reconstruction may involve months of recovery
  • Without a breast reconstruction procedure, you may require a prosthesis
  • You may experience ongoing pain

What Is Post-Mastectomy Pain Syndrome?

Some patients may experience chronic, neuropathic pain in the chest wall, arm or armpit that is known as post-mastectomy pain syndrome (PMPS). Although PMPS most commonly manifests as pain, it may also present as numbness, prickling or uncontrollable itching. The vast majority of post-mastectomy pain syndrome cases do not involve severe symptoms.

PMPS occurs in about 20 to 30 percent of women who undergo a mastectomy or a procedure involving removal of tissue from the upper outer portion of the breast or underarm area. Post-mastectomy pain syndrome is believed to be related to damage to the nerves in the chest or armpit.

Patients with the following characteristics are more likely to encounter PMPS:

  • Younger women
  • Underwent an axillary lymph node dissection
  • Had radiation therapy after the mastectomy procedure

How To Treat Post-Mastectomy Pain Syndrome

If you develop post-mastectomy pain syndrome, it may be difficult to find an experienced pain specialist who can effectively treat the condition.  Despite the high prevalence of PMPS cases, there is relatively little research into this health condition. This lack of scientific evidence has prevented the creation of treatment protocols.

There are only four possible pain therapies that have produced a significant reduction in pain symptoms among patients, according to current medical literature:

  • Antidepressants—tricyclic antidepressants like amitriptyline have been used to treat neuropathic pain including post-mastectomy pain syndrome. Various studies have shown that there is marked improvement of pain symptoms while on an antidepressant therapy.
  • Topical capsaicin—patients in one research trial who applied the topical analgesic capsaicin for 6 weeks had some improvement in jabbing pain but no relief from steady or skin pain.
  • Autologous fat grafting—the grafting of adipose tissue may relieve pain by remodeling scar tissue that is a causative factor for post-mastectomy pain syndrome. Two clinical studies have reported significant reductions in pain symptoms following fat grafting procedures.
  • Anticonvulsants—similar to tricyclic antidepressants, anticonvulsants can inhibit pain signaling that is often inherent in post-mastectomy pain syndrome.

There are also other treatment options that have not been scientifically studied as a therapy for post-mastectomy pain syndrome but have proven effective with other kinds of neuropathic pain conditions.

  • Muscle relaxants—for patients who experience muscle spasms or pain related to muscle tension, relief may come from muscle relaxants like Flexeril or trigger point injections.
  • Frozen shoulder treatments—it is quite common among mastectomy patients to favor one arm over the other unconsciously. This can cause the condition known as “frozen shoulder” which is usually treated with local anesthetics, steroid injections or physical therapy.
  • Manual manipulation—because scar tissue following a mastectomy may be a cause of pain, manual manipulation that breaks up the scar tissue is commonly recommended. Pain relievers are normally administered following these sessions to manage pain.
  • Over-the-counter pain relievers—in the initial stages of PMPS or if pain symptoms remain mild, then it may be managed with OTC pain relievers like ibuprofen, acetaminophen or aspirin.
  • Opioid pain relievers—in cases where pain is quite severe, stronger opioid pain relievers may be used. Most physicians will only prescribe opioids when other therapies fail and typically only for short periods.

Article written by: Dr. Robert Moghim – CEO/Founder Colorado Pain Care

M.D. Disclaimer: The views expressed in this article are the personal views of Robert Moghim, M.D. and do not necessarily represent and are not intended to represent the views of the company or its employees.  The information contained in this article does not constitute medical advice, nor does reading or accessing this information create a patient-provider relationship.  Comments that you post will be shared with all visitors to this page. The comment feature is not governed by HIPAA and you should not post any of your private health information.