Assessing preventive gynecologic decisions in individuals with Lynch syndrome

Highlights
  • Current Lynch syndrome guidelines for managing gynecologic risks are vague and often left to a clinician’s discretion.
  • Among 115 patients with intact uterus and/or ovaries upon Lynch diagnosis, 71 (61.8 %) underwent risk-reducing surgery.
  • Older age, lower education, completed childbearing, and history of non-gyn cancer were associated with having surgery.
  • Patients felt anxiety and frustration with the lack of provider knowledge and support to manage gynecologic cancer risks.

https://www.sciencedirect.com/science/article/abs/pii/S0090825825008297

What I Wish I Knew

What do you wish you knew then that you know now about your cancer experience?

https://womenofteal.blogspot.com/2025/05/what-i-wish-i-knew.html

Lynch Syndrome: Similarities and Differences of Recommendations in Published Guidelines

ABSTRACT:

Background: In this review, we aimed to compare the recommendations for Lynch syndrome (LS).

Methods: We compared the LS’s guidelines of different medical societies, including recommendations for cancer surveillance, aspirin treatment, and universal screening.

Results: Most guidelines for LS patients recommend intervals of 1–2 years for performing colonoscopy, though there is disagreement regarding the age to begin CRC screening (dependent on status as a MLH1/MSH2 or MSH6/PMS2 carrier). There are inconsistencies between LS guidelines for gastric cancer surveillance. Most guidelines do not recommend routine surveillance of the pancreas and small bowel. Most but not all of the guidelines support endometrial and ovarian surveillance with trans- vaginal ultrasound and endometrial biopsy. Only two societies recommend urological surveillance, while others recommend surveillance among high-­ risk carriers with family history only. There is significant disagreement between the guidelines about the recommendation for limited or extended bowel resection among patients with CRC. Aspirin use is recommended by most societies, though some with reservations, and most of them recommend universal screening.

Conclusions: There are significant disparities and disagreements in the guidelines and recommendations for patients with LS, causing confusion and difficulties for clinicians. Harmonisation and cooperation are needed between the societies creating LS guidelines.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/jgh.16881

Lynch Syndrome

https://www.cancer.ie/cancer-information-and-support/cancer-information/about-cancer/causes-of-cancer/cancer-and-genes/lynch-syndrome

Lynch syndrome increases the risk of a number of cancers. In general, the risk is highest for colorectal (bowel) cancer, but it depends on the gene affected. 

Some colorectal (bowel) cancers are hereditary. Up to 5 people out of every 100 diagnosed with bowel cancer have Lynch syndrome. Other cancers linked to Lynch syndrome include:

https://www2.hse.ie/conditions/lynch-syndrome/

  1. About
  2. Testing and diagnosis
  3. Your results
  4. Help and support
  5. Reducing your risk of cancer
  6. Children and family planning

Lynch syndrome for the gynaecologist (Nov 2020)

Key content
  • Lynch syndrome is an autosomal dominant condition closely associated with colorectal, endometrial and ovarian cancer.
  • Women with Lynch syndrome are at increased risk of both endometrial and ovarian cancer and should be offered personalised counselling regarding family planning, red flag symptoms and risk-reducing strategies.
  • Surveillance for gynaecological cancer in women with Lynch syndrome remains controversial; more robust data are needed to determine its effectiveness.
  • Universal testing for Lynch syndrome in endometrial cancer is being adopted by centres across Europe and is now recommended by the National Institute for Health and Care Excellence; thus, gynaecologists must become familiar with testing strategies and their results.
  • Testing strategies involve risk stratification of cancers based on phenotypical features and definitive germline testing.

https://obgyn.onlinelibrary.wiley.com/doi/10.1111/tog.12706

HSE Health A-Z

https://www2.hse.ie/conditions/?fbclid=IwY2xjawJkYm5leHRuA2FlbQIxMQABHkFLUBpOydNbjldMlqnKhFD4QPIqKDYAcq9evuEd5_8reM0IMb1AqnvBNIVo_aem_MZRw4PsbrQDiYxV5n49fCA#L

Check out new addition on “Lynch syndrome” thanks to NCCP.

Lynch Choices

  • Lynch syndrome is an inherited condition that increases the chance of developing certain cancers. The type of cancer depends on the genes involved.
  • This website helps people with Lynch to make choices that are right for them. It is designed to be used with support from the genetics service, GPs, healthcare teams in the community, charities and patient groups.
  • If you are concerned about Lynch but have not been diagnosed, please speak to your GP or genetics service.
  • You’ll find two sections which help you think about your choices at home, so you are ready to talk through these choices with a GP, genetics or other specialist.
  • There are also another six sections providing support and information for people with Lynch. These sections may also be useful to family members and healthcare professionals of people with Lynch.

https://lynchsyndromeireland.wordpress.com/wp-admin/post-new.php

Diagnosis Delivery Images

Diagnosis Delivery Cards is an initiative originally created by ISGO-PPI, a member association of ENGAGe from Ireland.

These cards are designed to support physicians in communicating diagnoses to patients in a structured, step-by-step manner, ensuring that key information is conveyed from the very beginning.

Each booklet focuses on a specific disease, featuring perforated pages that allow physicians to visually illustrate the affected areas of the body and outline treatment options.

These pages can be easily torn off and given to patients for their reference, making it easier for them to understand their diagnosis and treatment plan. The illustrations concentrate on the female pelvis and its organs, while the accompanying text details surgical options, potential complications, and side effects.

https://engage.esgo.org/discover/projects/diagnoses-delivery-cards/

If I have Lynch syndrome, will I get cancer?

Not everyone with Lynch syndrome will develop cancer, but you have an increased risk compared to the general population. People with Lynch syndrome have an increased risk of developing some types of cancer, such as:

• bowel (colorectal)

• endometrial or uterine

• ovarian cancer.

Lynch syndrome causes 1 in every 35 cases of bowel cancer, 1 in every 50 cases of endometrial cancer.

Your risk of developing cancer depends on which gene is affected, your age and being male or female.

Check out http://www.plsd.eu

Irish Network of Gynaecological Oncology(INGO)

Congratulations to INGO who was selected as the winner of the Patient Project of the Year Award at the Irish Healthcare Awards 2024 for it’s commitment to raising awareness of gynaecological cancer.

INGO comprises over 30 of Ireland’s foremost gynaecological cancer campaigners, researchers and patient advocates(including Lynch Syndrome Ireland).

Check out http://www.thisisGO.ie an online personalised resource for you and yours who have been impacted by a gynaecological cancer.