… their doctors misread the data, shock study claims

Half the women getting bilateral mastectomies in America do not need one – their doctor misread their genetic test data, a bombshell new study claims.

The rate of women getting preventative mastectomies has sky-rocketed since Angelina Jolie’s 2013 op-ed about genetic testing for cancer risk.

The actress revealed she chose to have both breasts removed, since a test showed she carried the faulty BRCA1 gene which increases one’s risk of breast cancer by 87 percent.

In the four years since, millions of American women have followed suit – rushing to get tested, and – in many cases – proceeding to get their breasts removed.

Similarly, surgeons have seen an increase in women newly-diagnosed with breast cancer going under the knife – even though, in many cases, that is unnecessary.

However, researchers at Stanford University School of Medicine claim that half of those who undergo bilateral mastectomy after genetic testing don’t actually have mutations known to increase their risk of cancers.

They warn that although genetic testing has become more common and less costly, it is also become more confusing.

The advent of multiplex gene panels that simultaneously test for mutations or variations in many different genes can render results that are difficult to interpret without the help of a trained genetic counselor.

In a nationally-representative study of 2,000 women, the researchers found 50 percent of the patients simply had variants of uncertain significance, or VUS – an unclear gene variant that is often eventually found to be harmless.

Experts say the research highlights the urgent need for genetic counselors to help both patients and physicians better understand the results of genetic testing amid a surge in popularity for the procedure.

‘Our findings suggest a limited understanding among physicians and patients of the meaning of genetic testing results,’ said Allison Kurian, MD, associate professor of medicine and of health research and policy at Stanford.

‘Clinical practice guidelines state that variants of uncertain significance should not be considered to confer high cancer risk, and that patients with these variants should be counseled similarly to a patient whose genetic test is normal.

‘However, many of the physicians surveyed in our study stated that they manage these patients in the same way as they do patients with mutations known to increase a woman’s risk.’

Only about half of the surveyed women who received genetic testing ever discussed their test results with a genetic counselor.

Between 25 percent and 50 percent of the surveyed breast cancer surgeons admitted to treating women with VUS in exactly the same way they would treat women with known cancer-associated mutations.

Worryingly, some women in the study said they had undergone surgery before receiving genetic testing or seeing the results, simply because they were so keen to lower their risk.

The researchers asked 2,502 women newly diagnosed with breast cancer whether they had received genetic testing, and if so, whether the testing and any discussion of results occurred before or after breast surgery.

They found that of the 666 women who had received testing, 59 percent were considered to have a high risk of a dangerous mutation in a cancer-associated gene.

About one-quarter of these women had genetic testing only after surgery – meaning critical decisions were made about their care before information about their mutation status was available.

Delays in testing were particularly pronounced in women who lacked private health insurance.

The researchers then polled the surgeons who treated the women in the survey.

They found that, when compared with doctors who had treated 51 or more newly diagnosed breast cancer patients during the previous year, doctors who had treated fewer than 21 breast cancer patients were: less confident in discussing the results of genetic testing with patients, more likely to order the genetic test without referring women to a genetic counselor, less likely to delay surgery in order to have test results available for surgical decision-making and more likely to manage a patient with variants of uncertain significance in the same way they would manage patients with proven high-risk mutations in cancer-associated genes.

‘Our findings suggest that we are not maximizing the benefit of genetic testing for our patients with breast cancer because of barriers related to timeliness of testing and lack of expertise necessary to incorporate results into treatment decisions,’ said Katz, who is a professor of medicine and of health management and policy at the University of Michigan.

Uncertainties as to the meaning of test results may lead less-experienced surgeons to recommend aggressive treatment in the form of bilateral mastectomies, or cause women to opt for what they may feel is the safest option to manage their cancer.

Conversely, high-risk women who do carry dangerous mutations need this information to make informed decisions about their health care choices.

‘The gaps identified in this study are striking,’ said Jagsi, professor and deputy chair of radiation oncology at the University of Michigan.

‘It is critical to ensure that patients at high risk for known cancer-associated mutations are fully informed of the potential benefits of genetic testing, and counseled accurately about the meaning of test results.’

‘We’re learning that clinicians’ knowledge of breast cancer genetics can be highly variable,’ said Kurian, who is a member of the Stanford Cancer Institute.

‘It’s important for women at high risk of carrying a dangerous mutation to see someone with expertise in cancer genetics when planning their care.

‘Unfortunately, in many cases genetic counselors may not be optimally integrated into the care of newly diagnosed cancer patients, making it difficult to rapidly triage these patients.

‘Our study highlights the urgent need for improved patient access to cancer genetics experts, particularly genetic counselors, and for educating physicians about the appropriate use of genetic testing and interpretation of test results.’

Written by Mia De Graaf for and published at The Daily Mail ~ April 12, 2017.

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