Misinterpreted test results lead to unnecessary surgery

Yesterday I told you about some outrageous claims coming out of the mainstream cancer care community about “curing” metastatic prostate cancer. These claims are not only irresponsible, they’re unethical.

Then again, so is a significant percentage of conventional cancer medicine. Including what was revealed in the study I want to tell you about today …

This one was about genetic testing — a topic I’ve covered a few times before. My main issue with genetic testing is that we really don’t know what to do with the information it provides, except in a limited way.

When it comes to cancer, everyone wants to do more rather than less, so mainstream doctors order genetic testing. But then they don’t have a clear understanding of what to do with the results. So again, they do more. And in the case of genetic testing for breast cancer, that often means they advise women to have bilateral mastectomies based on genetic probabilities alone.

As a result, we now have a disturbing trend of women of a certain age having their breasts removed as “prevention.” Why? Because they are being led astray by their conventional medical doctors, who are trying to do that they think is best.

Unfortunately, these doctors also suffer from lack of knowledge.

The truth is, genetic test results can be very complicated. I’m going to try to break down an important distinction for you, but it’s a little complex, so bear with me. You might even want to save this email in case you’re ever faced with needing this information in the future.

Basically, when people get tested for a gene mutation that predisposes them to breast cancer, they’re looking at the BRCA1 and BRCA2 genes. The test results can either point to a pathogenic mutation or a “variant of uncertain significance (VUS).”

That distinction should inform every care decision. In women who have the pathogenic mutation, bilateral mastectomy may be a reasonable option. In women with VUS, on the other hand, preventive surgery isn’t recommended.

Unfortunately, according to a new study published in the Journal of Clinical Oncology, half the surgeons who deal with genetic test results in breast cancer care don’t even pay attention to that distinction.

And that’s tragic, because it means that women are losing their breasts unnecessarily.

You see, most cases of VUS are ultimately reclassified as benign. Yet according to this study, half of the women with only average breast risk opted for a double mastectomy after learning they had VUS.

Even more disturbing, 42 percent of average-risk women had double mastectomies after their genetic testing revealed they had no genetic mutation at all.

This statistic represents a real disconnect between the purpose of the test and the application of the result in a clinical setting. And it highlights the fact that genetic tests do more harm than good if you don’t use them to make smart treatment decisions.

What’s needed here is more expertise, clearly. And genetic experts do exist. Just taking the extra step of referring patients to genetic counselors could save a lot of physical and psychological trauma. But this study found that up to one third of surgeons rarely referred patients for genetic counseling. Not only that, but they ordered the testing without a referral. That means it’s highly likely very few patients received optimal pretest care.

What worries me the most is that while genetic testing is getting cheaper, and access is increasing, the real cost will undoubtedly stack up later in the form of inappropriate and excessive surgery for women who are perfectly healthy.