Preventative Mastectomies: The Hidden Struggle With Chronic Pain

Many women who undergo mastectomies, including those performed as a preventive measure, develop a condition known as post-mastectomy pain syndrome (PMPS). This condition ranges from mild discomfort to disabling pain and can persist for years after the surgery.

A review of peer-reviewed research studies and interviews with surgeons, pain specialists, patient advocates and patients conducted by KFF Health News found that PMPS is inconsistently diagnosed and treated. This lack of consistency often leaves patients struggling to find physicians who take their chronic pain seriously.

Symptoms and Patient Impact

The physical manifestations of PMPS vary significantly among patients. Reported symptoms include itching, burning, stabbing pain, according to author Kathy Steligo.

For some, the condition results in extreme sensitivity to touch. Sophia Bassan, 43, experienced stabbing pain beneath her right armpit three weeks after her mastectomy. In the following months, she suffered from painful shocks that radiated through her back and chest.

Bassan’s condition became so severe that she was unable to lift a fork to her mouth or wear a shirt at times. She reported that she had to sleep sitting up because lying down was too painful, and she would flinch at the slightest touch.

I remember thinking I was losing my mind. One time I was in so much pain that I had to take off my top, and then my cat’s tail brushed against my back. I screamed.

Sophia Bassan

Prevalence and Diagnostic Challenges

Mastectomies are utilized both to treat breast cancer, which the American Cancer Society states affects 1 in 8 American women over their lifetimes, and as a preventive measure for women with genetic mutations or a family history that indicates an increased risk of the disease.

Determining exactly how common PMPS is remains difficult because the syndrome is poorly defined. This lack of a clear definition has led to a wide range of prevalence estimates in medical studies.

• High-end estimates suggest PMPS affects more than 50% of patients who undergo a mastectomy.
• Low-end estimates place the prevalence at approximately 10%, which would still represent tens of thousands of women.

Legislative Efforts for Coverage

Access to care for PMPS may be impacted by insurance coverage policies. To address this, the Advancing Women’s Health Coverage Act was introduced in October to ensure insurance coverage remains available after breast cancer treatment, including for those who had preventive mastectomies.

While the legislation does not mention post-mastectomy pain syndrome by name, the bill is designed to cover various complications, including chronic pain.