You’ve Been Diagnosed With Lynch Syndrome. Now What?

As a doctor who treats gynecologic cancers, I see a range of patients. Some come to me with a cancer diagnosis. Then there are patients who come to me with a hereditary cancer syndrome like Lynch syndrome.

Hereditary cancer syndromes are genetic conditions. If you have one, it means your genes put you at higher risk of cancer. This is called a genetic predisposition. Lynch syndrome increases the risk of colon, uterine (endometrial), and ovarian cancers.

Lynch syndrome itself isn’t cancer, but the diagnosis can still be devastating. It may feel like all the plans you had for yourself are now in question or out of reach.

If you’ve been diagnosed with Lynch or any other hereditary cancer syndrome, you’re what we call a “previvor” (a combination of “predisposition” and “survivor”). Here are some things I encourage you to think about as you move forward.

You may not develop cancer.

People with Lynch syndrome often develop colon, uterine, and ovarian cancers at a very early age. But having Lynch syndrome is not a guarantee you will get cancer.

This doesn’t mean you should ignore the diagnosis and hope for the best. We still recommend you take certain steps to watch for and prevent cancer (more on that in a moment). But it may help put things in perspective if you understand that having Lynch syndrome doesn’t automatically mean cancer is in your future.

We want you to stay on top of your screenings.

Life with Lynch syndrome can take cancer screenings to a whole new level. Depending on which Lynch mutation you have, doctors may recommend colonoscopies every 1 to 2 years. Endometrial biopsies may be recommended every 1 to 2 years, starting between age 30 and 35. Other screenings may also be recommended based on your genetics and family history. Screening guidelines for Lynch syndrome are continually changing, so it’s helpful to have yearly appointments with a doctor that you trust to navigate the changes.

Speaking of family history: Pay attention to the medical history of everyone in your family. With Lynch syndrome, your father’s and grandfather’s experiences with cancer are as important as your mother’s and grandmother’s.

We recommend all these screenings because, if you do develop cancer, finding it early can make it easier to treat. But the screenings amount to a lot of time, energy, and anxiety for people with Lynch syndrome. Talking about your feelings and the stress of your care with a counselor or others who have Lynch syndrome may help you feel supported. Your ob-gyn may be able to recommend resources.

Your life plans can inform your approach to care.

With Lynch syndrome, you’ll have to make many decisions about your health and your future. That knowledge can feel both urgent and overwhelming, especially in the beginning.

But in most cases, you have time to decide which preventive measures to take—you don’t have to decide all at once. As a previvor, your values, goals, and stage of life can affect how and when we approach these interventions.

For example, we recommend your ovaries and uterus be removed sooner rather than later. This is because you can’t develop cancer in these organs if you no longer have them. But removing these organs means you will go through early menopause and can no longer get pregnant.

If you still wish to get pregnant, we can delay surgery until you finish having children. Or if you’re focused on your career, you might wait if the long recovery time from surgery would have a negative impact on your job or career plans.

Ideally, you and your doctor should discuss removal of your ovaries and uterus by your mid-40s. Until then, we can reduce your risk for these cancers through lifestyle changes, hormonal medications, and other measures.

You have options for growing your family.

Learning you have Lynch syndrome can cause you to second-guess your plans for a family. You may not want to risk passing on the mutation to biological children. If you have a same-sex partner, you may rethink your strategy for building your family.

If you are faced with these decisions, ask your ob-gyn for a referral to a fertility specialist who can help you explore your options. If your goal is to not pass on the mutation, you could use donor eggs or have your embryos genetically tested. You can also choose to adopt. Keep in mind that many previvors decide to have children naturally, meaning without the help of fertility technology. It may help to talk about your options with family and friends.

You may or may not want your kids to get tested.

A hereditary cancer syndrome diagnosis can prompt other blood relatives to get genetic testing. We call this cascade testing.

If you have children already, you may wonder if they have Lynch syndrome. There is no medical reason to test them before they turn 18. After this age, they can decide for themselves whether to get tested.

A lifetime with Lynch

Lynch syndrome is something that happens to you, even if that thing isn’t cancer. You have a lifetime to live with it, and that’s part of what makes “previvorship” so hard, physically and emotionally. Beyond all the screenings, surgeries, and referrals, I hope to provide my patients with a safe space to deal with their diagnosis.

If the news still feels raw, take time to reflect. Talk with your loved ones. When you’re ready, a health care team can support you along this health journey. Lynch syndrome may disrupt the narrative of your life—but together, we can rewrite your story.

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This information is designed as an educational aid for the public. It offers current information and opinions related to women's health. It is not intended as a statement of the standard of care. It does not explain all of the proper treatments or methods of care. It is not a substitute for the advice of a physician. Read ACOG’s complete disclaimer.