Preventing Female Cancer in Women with Lynch Syndrome

dna double helix illustrating genes where the risk of Lynch syndrome comes from
How can you reduce the risk of female cancers in women with Lynch syndrome (HNPCC)?. Credit: Photo©digitalgenetics
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What can you do to prevent cancer in female organs (gynecologic cancers) if you have Lynch syndrome?

While unfortunately we don't have ways to prevent cancer for people with Lynch Syndrome—or without Lynch syndrome for that matter—we do know of some things you may be able to do which can reduce your risk of developing cancers of the ovaries or uterus. We also know of ways to test for female cancers, and by doing so, hope to find these cancers in the earlier more treatable stages.


Lynch syndrome is also known as hereditary nonpolyposis colorectal cancer syndrome (HNPCC). It is an inherited condition in which abnormalities in genes can be passed down from generation to generation.

The syndrome is related to changes in four genes: MLH1, MSH2, MSH6, and PMS2. These gene changes are inherited in an autosomal dominant fashion, meaning that you only need to inherit a mutated gene from one of your parents to face an increased risk of the syndrome. Lynch syndrome is responsible for 2% to 7% of colon cancers, and the average age of developing colon cancer is 45 in someone with Lynch syndrome.

Cancer Risks

General cancer risks for people with Lynch syndrome include:

  • Colorectal cancer: 20% to 80%
  • Stomach cancer: 1% to 13%
  • Liver and bile duct cancer: 1% to 4%
  • Bladder, kidney, and ureter cancer: 1% to 18%
  • Intestinal cancer: 1% to 6%
  • Brain cancer: 1% to 3%

Risk of female pelvic organ cancers include:

This condition predisposes people to some other cancers as well, such as breast cancer.

The risk of different types of cancer varies by the gene mutation, so your risk is best discussed with your health care team.

Lowering the Risk of Cancer

When talking about reducing risk, it's important to first make a distinction. Most screening tests you will hear about are a form of early detection. These tests do not prevent cancer, or even lower the risk that you will develop cancer. Rather, they increase the chance that a cancer will be discovered when it is smaller. And most cancers are more treatable, and perhaps even curable, when they are small.

In contrast, there are things people can do to reduce their risk of developing cancer in the first place. Eating a healthy diet and exercising fall into this category. Colon cancer screening, however, is somewhat unique among cancer screening tests. It offers the chance to find a cancer early—early detection—but may also aid in prevention, when precancerous tumors are found, and removed, before they turn into cancer.

General Cancer Prevention Measures

It's important to note that women with Lynch syndrome, in addition to other measures which will be discussed, should undergo cancer screening tests that women without Lynch syndrome receive. In fact, this is very important to remember, as it is important to care for health issues which could occur if you did not have Lynch syndrome. For example, women with hereditary breast cancer sometimes become so focused on breast cancer prevention that they forget to follow preventive screening for colon cancer screening as it seems "less important."

Keeping this in mind it is important for women with Lynch syndrome to talk to their physician about medical concerns unrelated to Lynch syndrome. For example, it is still important to talk about heart disease prevention even though this syndrome does not raise the risk of heart disease, because everyone is at risk.

Additional Preventive Measures for Women with Lynch Syndrome

In order to see what measures could be taken to decrease the chances of being affected by the increased genetic risk of Lynch syndrome, researchers have looked at the possible benefits of several screening tests.

Reducing Ovarian and Uterine Cancer Risk

There are several different options for reducing the risk of dying from ovarian or uterine cancer for women with Lynch syndrome. The 2013 Lynch syndrome recommendations by a group of European experts note that prophylactic hysterectomy and bilateral oophorectomy prevents the development of endometrial and ovarian cancer. They say it should be discussed with those who have completed their families, especially after the age of 40 (when the risk of these cancers is increased). The U.S. Multi-Society Task Force on Colorectal Cancer and the National Comprehensive Cancer Network 2012 recommendations are in agreement with this.

A 2011 study focusing on a cost analysis of different approaches found risk reduction surgery to be the most cost effective approach.

Since being your own advocate is so important in getting the best treatment possible, it can be helpful to know where some of these recommendations come from. Then, and after comparing the different choices with your own personal wishes, you can make the decision that is best for you personally.

Researchers have looked at various approaches to reduce the risk of dying from these cancers. Some things that have been tried include:

The researchers determined that the most invasive option (surgery) resulted in the lowest cancer risk and the least invasive option (annual exams) resulted in the greatest cancer risk. This held true for both ovarian and uterine cancers. But, overall survival didn't change much. A 2006 study that informed the recommendations of the U.S. Multi-Society Task Force found that, on average, women who had their uterus, ovaries, and fallopian tubes removed at age 30 lived three years longer than those who had annual gynecologic exams.

Specifically, ovarian cancer occurred in 8% of women who underwent annual exams, four percent who had annual screening, and less than 1/10 of a percent of women who had surgery. Uterine cancer occurred in 49 percent of women who underwent annual exams, 18 percent who had annual screening, and less than 1/10 of a percent of women who had surgery. Though it seems counterintuitive, it is still possible for women to get ovarian or uterine cancer when those organs have been removed. An example is peritoneal carcinoma.

Women who had annual exams lived to be about 77, those who had annual screening lived to be about 79, and those who underwent surgery lived to be about 80.

Reducing the Risk of Other Cancers

There are many screening considerations for people with Lynch syndrome for early detection of other cancers. For example, yearly or biyearly colonoscopies are recommended beginning at age 20 to 25 or five years less than the age at which a relative developed the disease. Talk to your doctor about these screening tests to determine what is right for you.

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  1. Giardiello FM, Allen JI, Axilbund JE, et al. Guidelines on genetic evaluation and management of Lynch syndrome: a consensus statement by the US Multi-society Task Force on Colorectal Cancer. Am J Gastroenterol. 2014;109(8):1159-79. doi:10.1038/ajg.2014.186

  2. American Society of Clinical Oncology. Lynch Syndrome. Updated August, 2018.

  3. Vasen HF, Blanco I, Aktan-Collan K, et al. Revised guidelines for the clinical management of Lynch syndrome (HNPCC): recommendations by a group of European expertsGut. 2013;62(6):812–823. doi:10.1136/gutjnl-2012-304356

  4. Yang K, Caughey A, Little S, Cheung M, Chen L. A cost-effectiveness analysis of prophylactic surgery versus gynecologic surveillance for women from hereditary non-polyposis colorectal cancer (HNPCC) families. Familial Cancer. 2011. 10(3):535-43. doi:10.1007/s10689-011-9444-z

  5. Schmeler KM, Lynch HT, Chen LM, et al. Prophylactic surgery to reduce the risk of gynecologic cancers in the Lynch syndrome. N Engl J Med. 2006;354(3):261-9. doi:10.1056/NEJMoa052627

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