Breast Cancer Awareness Month: What Lynch Syndrome Previvors Should Know

Every October, the world turns pink, and for good reason. Breast cancer awareness has saved lives by encouraging screening, funding research, and starting conversations that used to be whispered.

When people think about hereditary breast cancer, they usually think of BRCA1 and BRCA2, and they should. Those gene changes carry a high risk, and the awareness and advocacy around them have helped many families get tested and make informed choices. Mayberry Memorial is grateful for that work.

But BRCA isn’t the only genetic story in October. Research suggests that for some people with Lynch syndrome, breast cancer belongs in the conversation too.

What the research says

Lynch syndrome is best known for raising the risk of colorectal and endometrial cancers. Whether it also raises breast cancer risk has been debated for years. A 2013 systematic review found that 13 studies showed no association, while 8 found an increased risk.

A major reason for the mixed results is that Lynch syndrome isn’t one gene. Many earlier studies were dominated by people with MLH1 or MSH2 changes, with too few MSH6 and PMS2 carriers to draw conclusions.

In 2018, researchers at Columbia University looked at the four Lynch syndrome genes individually, studying 423 women with Lynch variants. They found that women with MSH6 or PMS2 changes had about twice the breast cancer risk of women in the general population. MLH1 and MSH2 carriers did not show the same increase.

These findings come with caveats. The researchers said the results need to be confirmed in other studies, and many experts remain uncertain about the true level of risk. FORCE, the hereditary cancer advocacy organization, describes the increase as modest.

This isn’t a comparison

BRCA and Lynch syndrome are different conditions with different risk profiles. For breast cancer specifically, BRCA carries the higher risk, and for Lynch previvors the main concerns remain colorectal, endometrial, and the other cancers associated with the syndrome.

The point isn’t to rank them. It’s that Lynch previvors shouldn’t assume breast health is a separate conversation. Hereditary risk is rarely tidy, and your care should cover the whole picture.

What this means in practice

  • Know your gene. Your specific variant matters, so ask your care team which gene your Lynch syndrome involves and what that means for you.
  • Tell your doctor about your family history. Breast cancer in your family, alongside Lynch syndrome, may change the conversation about when and how often to screen.
  • Ask the question directly. “Given my Lynch syndrome, what should my breast screening look like?” is a reasonable thing to ask, and the answer should be tailored to you.
  • Keep every appointment. Mammograms and Lynch surveillance are both part of looking after yourself.

There’s a flip side. If breast cancer runs in your family and testing came back negative for BRCA, you may still have an answer worth looking for. Ask your doctor or genetic counselor whether a broader panel that includes the Lynch syndrome genes makes sense.

Why this matters to us

Nearly 95 percent of people with Lynch syndrome don’t know they have it. You can’t act on a risk you don’t know about, and you can’t ask the right questions if nobody has told you which ones to ask.

That’s why Mayberry Memorial’s Project Conquer helps potential previvors access genetic testing and counseling. It’s the first step toward understanding your risk, whatever form it takes.

This October, wear the pink, schedule the screening, and talk to your family. If your story includes Lynch syndrome, make sure your care team knows. Learn more about Project Conquer at mayberrymemorial.org/project-conquer.