Radical empowerment? How women take control of their breasts

When Jamie Kastelic was first diagnosed with breast cancer in 2012 – shortly after she stopped breastfeeding her youngest son – she didn’t hesitate to have both breasts and her ovaries removed. She was 33 years old.

“I just want to survive,” she had thought. Watching her two young sons grow was far more important than keeping her breasts.

She then abandoned breast reconstruction efforts after suffering a near-fatal infection in the process. Now, she only wears her personalized prosthetic breasts sometimes, like on special occasions. Breasts just aren’t that important to her.

Kastelic’s decision to remove both breasts seemed “radical and crazy” to some she confided in; the pea-sized tumor had affected only one breast. But for her, the compromise was simple. Kastelic had seen his aunt deal with a terminal recurrence of breast cancer that she had treated with lumpectomy years before. Kastelic then decided that if she ever got breast cancer, she would take aggressive action.

Today, his decision may not have been controversial at all.

Contralateral prophylactic mastectomy, or proactive double mastectomy, complies with medical recommendations for women at very high risk of breast cancer, according to Dr Ted A. James, chief of the department of surgical breast oncology at Beth Israel Deaconess Medical Center in Boston and associate professor of surgery at Harvard Medical School.

James says there are other treatment options, even for high-risk women, like those BRCA genetic mutations, but double mastectomy can reduce the risk by 95% or more.

Some women without high risk take this approach even when it is not considered clinically necessary. According to James, when breast cancer is small enough to lend itself to lumpectomy, or one breast needs to be removed but the other is unaffected, the removal of the unaffected breast does not necessarily increase. a woman’s chances of survival. Doctors do not recommend prophylactic mastectomy in these cases.

“As a field of breast surgery, we really try to defuse treatment and avoid overtreatment,” James said.

But this does not make the choice invalid, provided the patient is well informed of the risks and benefits.

“Survival is not the only significant endpoint,” said James.

Quality of life matters too. Removing the unaffected breast can decrease a woman’s anxiety, create peace of mind, or facilitate reconstruction in a way that meets her needs.

“If we educate patients, if we engage in a process of shared decision making and then supporting them in a decision that is really suited to their preferences and priorities, that’s ideal, ”said James. “As long as this process is followed, I think the right things are being done for the patient.”

The research supports James’ perspective. In one study On decision regret in women with breast cancer, the researchers found that women who felt involved in the decision-making process were less regretful of having had a mastectomy.

“I don’t think there is a right or wrong answer in terms of choice,” James said. It is how you arrive at that choice that matters most.

The fight to be heard

Kaitlin Christine, CEO and Founder of Gabbi, started her business to prepare women for these types of difficult medical choices. Christine had no support when she made her own decision to have a bilateral mastectomy at the age of 24.

Her mother had been a carrier of a BRCA mutation, although they did not find it until 2012, when she was diagnosed with stage IV metastatic breast cancer that had spread to the breast cavity. breast wall, lungs and kidneys. Christine’s mother died within seven months of her diagnosis.

Christine remembers her mother screaming on her iPad at the breakfast table after reading Editorial by Angelina Jolie on getting a prophylactic mastectomy.

“Are you telling me I won’t be here?” Wouldn’t I die if this had happened to me? ‘ Her mother exclaimed, frustrated because she had asked her doctor to do genetic tests and was told it was not necessary.

This editorial may have saved Christine’s life. A week or two after reading it, Christine’s mother grabbed her hand and said, “Honey, I think you need to take this test.”

Christine went to her mother’s doctor who told her that she did not need genetic tests. Christine, then 22, was too young and that would not change her medical approach.

Something was wrong. Christine insisted on the question.

– You are the doctor, said Christine. “You’re clearly the expert here, but I don’t think my genetics change with age, do you?” “

The doctor told her not to worry about it, but Christine held on, insisting she wouldn’t leave until she got tested. His test came back positive.

Christine later found a lump in each breast and went to another doctor, who was also skeptical that it was cancer at such a young age. Christine pleaded for a mammogram, which she got. Regarding the results led to an MRI, then an ultrasound, and finally a biopsy, which showed precancerous cells. Doctors were still skeptical, speculating that she had dense breast tissue or a false positive result.

Christine knew something was wrong and set out to do her own research and get several second opinions to figure out what was going on in her body.

“Once I have been armed with all this information, [I] was able to invite these doctors into my process.

She stopped fighting, finally feeling respected and taken seriously by her doctors.

She opted for a prophylactic bilateral mastectomy, during which she was discovered to have breast cancer.

A shift towards consumer empowerment

Christine shouldn’t have fought so hard for genetic testing, given her obvious risks.

James advocates genetic testing, especially for women with a family history of breast cancer.

“It’s pretty amazing to think that you harbor a gene that predisposes you to having a potentially fatal disease,” he said. “And you can identify it and take a step to step in and change that fate.”

Kastelic and Christine each used their voices to change their fate.

“There has definitely been a change in the way women and doctors feel about breast cancer,” Kastelic said. “Why can’t we just be women proud of our stories and our journey? “

For Kastelic, this celebration of individual choices is more beautiful than her breasts.

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