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The Voice of People With Breast Cancer

Education

Our Voices Blog


The views and experiences expressed through personal stories on Our Voices Blog are those of the authors and their lived experiences. They do not necessarily reflect the position of the Canadian Breast Cancer Network. The information provided has not been medically reviewed and is not intended to be a substitute for professional medical advice. Always seek the guidance of your healthcare team when considering your treatment plans and goals.

Feeling Pain and Sensations in the Area of Your Removed Breast? You May be Experiencing Phantom Breast Syndrome

Some breast cancer patients who had a mastectomy have reported feeling painful and non-painful sensations in the area of the breast that was removed. This condition, known as phantom breast syndrome (PBS), usually start in the first year after a mastectomy. 1 Sensations due to PBS usually occur in the chest, armpit, surgical scar, and inner arm and last far beyond the expected time for post-surgical pain. 2 The prevalence of PBS is not exactly known, most likely due to a lack of reporting as patients either feel like it is not that big of a deal or because they find it hard to describe. PBS has been reported to affect anywhere between 4% to 56% patients 2; other studies report that it affects anywhere between 10% to 55% of women. 1

What Causes Phantom Breast Syndrome?

A study presented to an annual meeting of the American Society of Anesthesiologists reported that breast pain prior to mastectomy was the major predictor of PBS, with this factor doubling its incidence rate.

Research also link the sensations to the nervous system. When nerves are cut, new nerve tissues called neuromas form and these new growths send abnormal signals to the nervous system which is then interpreted as pain by the brain. 3 Another cause that has been identified is that PBS may be the central nervous system reorganization due to a sudden absence of input from the area. It may also be the case that since the area where the breast was removed is no longer sending input to the brain, input coming from other areas close to the breast and interpreted as coming from the breast. 1

Symptoms of Phantom Breast Syndrome

The sensations feel by someone experiencing PBS include, but are not limited to: 1, 2

  • Pain
  • Itching that is not remedied by scratching
  • Tingling
  • A pins and needles sensation
  • Pressure or heaviness
  • Burning
  • Stabbing
  • Aching
  • Tightness
  • 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 nearby areas and usually happen randomly.

It is important for breast cancer patients to know that phantom breast syndrome is common and normal, although it may not be talked about very often. It is important to speak to your healthcare team about these sensations to both raise awareness of PBS and to get ways to address it. Your doctor may put you in contact with a cancer counselor to help alleviate some of the emotional distress that can be cause by PBS.

Photo by Ümit Bulut on Unsplash