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It was the end of 2022, Christmas was approaching, and Eva Martín, 62, went to see her gynecologist because she noticed a lump in her right breast. "And that's where it all started," says the patient. After many tests, the diagnosis of breast cancer came at the end of January 2023.

The results of the biopsy confirmed that the lump she had noticed was a malignant tumor. "I remember that the gynecologist was very sensitive and explained to me in detail what the operation consisted of, he told me that it was necessary to remove the entire breast, because it was in several areas," says the patient.

What Eva didn't know was that, although they were going to remove her breast, some time later she was going to feel her with her again. She had received psychological support, even before the operation, but no one informed her about one of the possible effects after the post-mastectomy. "On the day of the surgery I was very nervous, and I think until then I wasn't really aware of what it would mean to lose my breast. The operation went very well and the postoperative period was very, very painful."

Some time had passed since her mastectomy, and Eva began to feel her breast, the right one, the one she no longer had. She didn't understand what was happening to her, no specialist had told her that this could happen, nor had she heard it from other patients.

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Eva doesn't know exactly when that sensation began to appear, but what she is sure of is that it was when "the terrible post-operative pain" began to disappear. "It was from time to time, when I was dressing, when I put on a jacket, I noticed it there, but obviously it wasn't there. It's a very strange feeling."

At the moment, Eva has not reconstructed her breast, it is a subject that she has pending. "I've thought about it. It's not a matter of age, it's a matter of how you feel."

What happened to Eva has a name: phantom breast syndrome. "It is a condition that is characterized by having physical sensations in the region of the breast that has been operated on, and they feel as if they still have it," explains Helena Huertas, an oncologist at Onelife Center, a pain prevention and treatment center.

It was from time to time, when I got dressed, when I put on a jacket, I noticed it there, but evidently it wasn't there. It's a very strange feeling


Eva thought that what was happening to her might be a figment of her imagination, and she was afraid to show it. However, it has its scientific explanation. "Although it may seem like a sensation imagined by the patient, it is a physical problem," says the oncologist. It is caused by an injury to the peripheral nerves, which are responsible for sending messages from the brain and spinal cord to the rest of the body. "Even though it's removed in the breast, the part of the brain that's meant to feel it is still active, and the body interprets in the form of sensations that it's still there, even though it's not really like that."

"It's been eight months since my mastectomy and sometimes I still feel pain, like a cramp that goes from my chest to my armpit, very intense and brief." There are some patients, like Eva, who not only have the sensation, but also feel pain. "It is usually a nervous pain, in the form of pins and needles or burning, or sensations such as tingling, itching, numbness or tension," says Rodrigo Sánchez, a scientist at the Spanish Society of Medical Oncology (SEOM) and an oncologist at the Breast and Gynecological Cancer Unit of the Hospital 12 de Octubre in Madrid.

The actual prevalence of this syndrome is unknown, because "the data come from retrospective registries and very heterogeneous patient populations," the oncologist clarifies. According to a study by the Spanish Society of Senology and Breast Pathology, in which they surveyed 50 mastectomized women, phantom breast syndrome appeared in 38% of the women questioned, of whom 31.6% expressed that they felt itching in the absent nipple. The authors also indicate that although it is a prevalent syndrome, it is little known and studied. "It is a symptom that is usually not explained, and also the patient herself in consultation does not usually talk about it because they do not know it, they usually think that it is psychological," adds Huertas.

Although it is removed in the breast, the part of the brain that is meant to feel it is still active, and the body interprets in the form of sensations that it is still there, even though it really is not

Helena Huertas


It's usually frustrating because patients have discomfort in a part of the body where they look at themselves and ask themselves, 'If I don't have this part, how can it be hurting??'" Sensation and pain usually appear within months of surgery, although it can also manifest itself from the beginning.

"In most cases, its appearance is sporadic and does not require any type of pharmacological intervention," explains Rodrigo Sánchez. Eva usually does not need to take medication, because the pain appears in isolation. Only in very severe or disabling cases may drugs be required.

The oncologist points out that "physiotherapy techniques tend to help a lot, with specific exercises to 'educate' the brain to modulate that pain or those sensations". "It's like re-educating him and teaching him that that part of his body is no longer there, and that he shouldn't feel it." These sensations usually last a few months after surgery, although there are times when "it can become chronic," Huertas says.

Eva would have liked to have known about its existence earlier, as she believes that it would have helped her to normalize what was happening to her. "It usually affects them psychologically because they don't know that this exists, and they can have the feeling that what they're feeling doesn't make sense, and therefore they don't count, and it aggravates the problem. Also because the sensation makes them continually remember what happened," explains the oncologist. Eva says that she goes to therapy to overcome the loss, which is the most painful thing, but also to overcome the sensations that the syndrome produces in her.

"The most important thing is to explain to patients what can appear and help them understand what is happening to them," concludes oncologist Rodrigo Sánchez.

"Neither fighters, nor brave": this is how the patients describe themselves

Today, October 19, is World Breast Cancer Day. It is the second leading cause of death in women, according to the INE, and the most prevalent type of cancer in women. In Spain, according to data from the Spanish Society of Medical Oncology, 35,000 new cases will be detected this year.

Paula González, representative of the Spanish Federation of Breast Cancer (FECMA) tells how certain terms that are usually addressed to affected women can harm them more than help them. "Fighter, warrior, survivor, brave...", labels that confront the pain they are going through.

Words that pressure them to maintain the image that is expected of them. "They say it from a place of affection, to console us, but they really bring an extra weight that we neither want nor need," says Paula, also a patient. "We must explain to our circle how we want them to address us, what terms we don't like and what makes us worse." No one wants to leave. "I wasn't a survivor, I was lucky that my body has resisted." To which he adds: We have to banish the vocabulary of war, it is not a battle, it is a reality that we have to face."

  • Breast Cancer
  • cancer
  • Pharmacology