Category: Screening

A Cancer Journey: My Lynch Syndrome

 I hope will put a Lynch Syndrome diagnosis in the proper perspective and keep you and your loved ones alive.

First, do not bury your head in the sand…

If you have a family history of cancer–of the uterus, ovaries, bladder, ureter, kidney, stomach, small intestine, liver, pancreas, prostate, and oil glands (there may be others), take seriously the possibility that there is a hereditary component to such histories.

Especially–I repeat ESPECIALLY–if there’s a family history of colon or uterine cancer at a young age, talk to your doctors and get tested for Lynch.

And if you happen to test positive for the Lynch mutation, don’t hide it from your family. Because sharing that information may save others in your family as well.

Second, if you discover that you or a loved one has Lynch Syndrome, DON’T FREAK OUT!

https://frankjpeter.com/category/cancer/

Realise that such knowledge—as upsetting as it—invites you to design a surveillance program with your doctors that will enable you to “stay ahead” of the most common types of Lynch cancers, and thus to swing your odds of living a relatively healthy life hugely in your favor.

European guidelines from the EHTG and ESCP for Lynch syndrome: an updated third edition of the Mallorca guidelines based on gene and gender(2021)

Results

Recommendations for clinical and molecular identification of Lynch syndrome, surgical and endoscopic management of Lynch syndrome‐associated colorectal cancer, and preventive measures for cancer were produced. The emphasis was on surgical and gastroenterological aspects of the cancer spectrum. Manchester consensus guidelines for gynaecological management were endorsed. Executive and layperson summaries were provided.

Conclusion

The recommendations from the EHTG and ESCP for identification of patients with Lynch syndrome, colorectal surveillance, surgical management of colorectal cancer, lifestyle and chemoprevention in Lynch syndrome that reached a consensus (at least 80 per cent) are presented.

https://academic.oup.com/bjs/article/108/5/484/6287132?login=false

thisisGO – Lynch Syndrome

thisisGO.ie is an online personalised resource for you and yours who have been impacted by a gynaecological cancer.

Also an excellent resource for Lynch Syndrome.

Home

National Nursing Workshops: An introduction to Lynch syndrome & the national Lynch syndrome project(UK)

These workshops are aimed at nurses looking for an introduction to Lynch syndrome and the project, and will cover the basics.

A Guide to Lynch Syndrome

Lynch Syndrome 

Lynch Syndrome is an inherited condition that increases your risk of developing some cancers, including bowel, womb and ovarian cancer. We have developed a guide to run through everything you need to know about Lynch.

A Guide to Lynch Syndrome 

You can download a copy here

This guide has been made with input from experts, people with Lynch Syndrome and our Ask Eve nurses to provide you with all the information you need when offered testing for, or navigating a diagnosis of, Lynch Syndrome.  

We also have an Easy Read guide to Lynch Syndrome, which you can download here 

Lynch Syndrome

MyLynch: A Patient-Facing Clinical Decision Support Tool for Genetically-Guided Personalised Medicine in Lynch Syndrome

Lynch syndrome (LS) is associated with varying cancer risks depending on which of the five causative genes harbors a pathogenic variant; however, lifestyle and medical interventions provide options to lower those risks.

“We developed MyLynch, a patient-facing clinical decision support (CDS) web application that applies genetically-guided personalized medicine (GPM) for individuals with LS. MyLynch informs LS patients of their personal cancer risks, educates patients on relevant interventions, and provides patients with adjusted risk estimates depending on the interventions they choose to pursue. MyLynch can improve risk communication between patients and providers while also encouraging communication among relatives with the goal of increasing cascade testing. As genetic panel testing becomes more widely available, GPM will play an increasingly important role in patient care, and CDS tools offer patients and providers tailored information to inform decision-making. MyLynch provides personalised cancer risk estimates and interventions to lower these risks for patients with LS.”

https://www.mdpi.com/2072-6694/15/2/391

“The MyLynch risk estimates and their clinical utility should be validated on larger samples of patients in future studies. We also plan to produce a mobile compatible version of the app as well as incorporate risk uncertainty into the estimates.”

Online personalised resource for you and yours who have been impacted by a gynaecological cancer.

Gynaecological cancers refer to any cancer of the female reproductive system which includes the uterus (womb), the ovaries, the cervix (the neck of the womb), the vulva (the outer part of the female genitals) or the vagina.

Ovarian cancer and was launched in February 2022 and the genetic conditions, BRCA and Lynch Syndrome, were added in May 2022.  Uterine cancer went live in September 2022.  Vulva cancer and vaginal cancer will be live before the end of 2022.

Just log on to https://thisisgo.ie and select “My Profile”

Many Early Onset Colon Cancers are Caused by Genetic Mutations Through Families

“The prevalence of hereditary cancer syndromes among early-onset colorectal cancer patients – including Lynch syndrome – was quite high, which presents a tremendous opportunity for us to save lives through early detection based on genomic risk factors,” 

Based on this new data, the OSUCCC – James research team recommends genetic counseling and a broad, multi-gene panel test of cancer susceptibility genes for all early-onset colorectal cancer patients, regardless of family history or the results of tumor screening for Lynch syndrome. This differs from current professional guidelines, which recommend all colorectal cancer patients be screened for Lynch syndrome, with referral for genetic counseling and Lynch syndrome-specific genetic testing if the tumor-screening test is abnormal.

“We expected to find a high rate of Lynch syndrome among these early-onset colon cancer patients. What was surprising were some of the other gene mutations found in the young colorectal cancer patients, including mutations in genes traditionally linked to breast cancer risk, even in patients whose family history was not suggestive of those mutations,” 

https://news.cancerconnect.com/colon-cancer/many-early-onset-colon-cancers-are-caused-by-genetic-mutations-through-families

The NordICC Trial: The Devil Is in the Details

The NordICC trial was a randomized, pragmatic study that enrolled 84,585 adults aged 55 to 64 years old from Poland, Norway, and Sweden.

[T]he NordICC trial … fills an important knowledge gap and provides new insight into the real-world population-wide benefit of colonoscopy for colorectal cancer screening.

Preventing Colorectal Cancer

It is important to highlight an advantage of colorectal cancer screening that distinguishes it from all other cancer screening modalities. Colorectal cancer screening with endoscopy is unique in that it aims to, in part, prevent disease by identifying and removing premalignant lesions.

https://ascopost.com/news/november-2022/the-nordicc-trial-the-devil-is-in-the-details/