Lynch Syndrome Awareness

06/22/2026

What do donor-conceived children have a right to know?

A recent commentary, Protecting the Health of Donor-Conceived Offspring, highlights an important issue that is becoming more relevant as genetic testing becomes increasingly common: access to accurate family health history. Donor-conceived individuals may unknowingly lack critical information about inherited cancer risks, heart disease, neurological conditions, and other health concerns that could affect medical decisions throughout their lives.

In an era where a simple DNA test can reveal unexpected biological connections, some experts are questioning whether anonymous donation models can adequately protect the long-term health interests of donor-conceived people. Maintaining updated medical information and ensuring pathways for important health updates may become increasingly important for future generations.

This conversation isn't just about genetics—it's about identity, informed healthcare, and balancing the privacy of donors with the health needs of donor-conceived individuals.

What do you think?

Should donor-conceived children have access to updated medical information from donors throughout their lives, even if the donor remains anonymous?

Read more: https://link.springer.com/article/10.1007/s10689-026-00576-x

06/21/2026

06/18/2026

*Update, we are awaiting some answers on why PMS2 wasn’t listed on this update but we are confidant there will be more details to come soon.

🔔 New NCCN Lynch Syndrome Guideline Updates Released

NCCN has released Version 1.2026 of its Genetic/Familial High-Risk Assessment Guidelines, including important updates related to Lynch syndrome and hereditary GI cancers.

These updates help guide genetic testing, risk assessment, and cancer prevention for individuals and families at increased hereditary cancer risk.

Thank you to CGA-IGC for sharing this news and to NCCN for their continued work advancing evidence-based care.

💙 Knowledge saves lives.



www.LynchSyndromeAwareness.com

06/17/2026

Not All Mismatch Repair Defects Look the Same

A new study examined the expression of the Lynch syndrome-related proteins MLH1, MSH2, MSH6, and PMS2 in colorectal cancer tissues—and the results were interesting.

Researchers found that 22.5% of colorectal cancers showed deficient mismatch repair (dMMR), meaning at least one of these important DNA repair proteins was lost.

What stood out?
🔹 The most common abnormality was isolated PMS2 loss, accounting for half of all dMMR cases.
🔹 Tumors with dMMR were more likely to be located in the right side of the colon, poorly differentiated, and/or mucinous in appearance under the microscope.
🔹 Researchers also noted that tumors with isolated MSH6 loss appeared more likely to occur in younger patients and show poor differentiation, although larger studies are needed to confirm this finding.

Why does this matter?
For many people, loss of MLH1, MSH2, MSH6, or PMS2 on tumor testing is the first clue that Lynch syndrome may be present. Studies like this help researchers better understand which tumor characteristics are associated with mismatch repair deficiency and may help identify patients who could benefit from further genetic evaluation.

Have you ever looked at your pathology report to see which mismatch repair proteins were present—or missing? Was loss of MLH1, MSH2, MSH6, or PMS2 the clue that ultimately led to your Lynch syndrome diagnosis?

Read more: https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2026.1840244/abstract

06/17/2026

🧬Clincal Trial Opportunity🧬

Please share!

https://www.mskcc.org/cancer-care/clinical-trials/19-288

06/15/2026

What if the gene you inherited could change your future—but only if you knew about it?

A new study explored an important question: How well are we identifying people with hereditary cancer syndromes before cancer develops?

The findings highlight a fascinating reality: not all hereditary cancer syndromes are detected equally. While BRCA-related hereditary breast and ovarian cancer often receives significant public attention, many individuals with **Lynch syndrome** remain undiagnosed despite being at risk for multiple cancers that may be preventable or caught early through surveillance.

Think about that for a moment...

🔹 Most people with Lynch syndrome don't know they have it.
🔹 Many families carry Lynch syndrome for generations before it's recognized.
🔹 A simple genetic test can change not only one person's future—but an entire family's.

For those of us in the Lynch syndrome community, this study reinforces something we've long believed:
**Awareness matters.**
**Family history matters.**
**Access to genetic testing matters.**

Every person identified through genomic screening is an opportunity to prevent cancer, detect it earlier, and help relatives learn their own risk.

The question isn't just "Can genetic screening find Lynch syndrome?" The bigger question may be: How many people are still out there who have Lynch syndrome and have no idea?

Let's discuss:

How was Lynch syndrome discovered in your family?
* After your own cancer diagnosis?
* Through a relative's diagnosis?
* Through genetic screening before cancer ever developed?

Your story might encourage someone else to pursue testing.

Read more: https://ascopubs.org/doi/abs/10.1200/JCO.2026.44.16_suppl.e13537

06/15/2026

June is Uterine Cancer Awareness Month 💗

Did you know that uterine (endometrial) cancer is one of the most common cancers associated with Lynch syndrome in women?

Awareness can save lives. Knowing your family history, understanding your genetic risk, and recognizing potential warning signs can lead to earlier diagnosis and better outcomes.

This month, help us educate, empower, and support individuals and families impacted by Lynch syndrome and uterine cancer.

Together, we can raise awareness, save lives, and inspire hope.

06/13/2026

Lynch Syndrome & Breast Cancer: Is the Story Changing?

For years, most of us have been told that breast cancer isn't considered a "classic" Lynch syndrome cancer.

But new research presented at ASCO 2026 is adding fuel to a debate that has been ongoing for years—particularly for women with **MSH2 and MSH6** mutations.

Researchers reviewed breast cancer rates among women with Lynch syndrome and found evidence suggesting that breast cancer may occur more frequently in certain Lynch syndrome populations than previously recognized. While experts still don't agree on whether breast cancer should officially be considered a Lynch-associated cancer, studies continue to raise important questions about the role of mismatch repair genes in breast cancer development.

Why does this matter?

🔹 Breast cancer screening recommendations for Lynch syndrome are currently based primarily on family history—not Lynch status alone.

🔹 Some previous studies have found increased breast cancer risks in women with MSH6 mutations, while other research has produced conflicting results.

🔹 As more people undergo multi-gene panel testing, researchers are gaining a clearer picture of how cancer risks may differ between Lynch genes.

The takeaway? The science is still evolving.

For now, it's important to know your family history, discuss your specific Lynch gene with your healthcare team, and stay informed as new research emerges.

Let's talk:

If breast cancer isn't currently part of your Lynch syndrome surveillance plan, do you think it should be?

And for our MSH2 and MSH6 community members—has your doctor ever discussed a possible connection between your Lynch syndrome and breast cancer risk?

Read more: https://ascopubs.org/doi/abs/10.1200/JCO.2026.44.16_suppl.e22655