- Lynch syndrome affects 1 in 279, increasing cancer risk and highlighting the need for genetic testing and preventive measures.
- Previvors navigate a complex emotional landscape, balancing grief, fear, and resilience while advocating for awareness and education.
- The medical system often overlooks previvors, who face high healthcare costs and the emotional burden of preventive measures.
- Prevention, genetic testing, and understanding family history are crucial for managing hereditary cancer risks and saving lives.
Category: Previvors
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:
- Endometrial (womb)
- Urothelial (kidney, ureter bladder)
- Ovarian
- Stomach
- Small bowel
- Bile duct/gall bladder
- Brain
- Pancreas
- Prostate
- Skin
What I Wish I Was Told About Lynch Syndrome
“The most challenging part of dealing with Lynch syndrome for me is the uncertainty surrounding my son’s health. The fear of him possibly inheriting the mutation gives me anxiety, especially since he hasn’t been tested yet. If it were solely about me, I might have approached things differently — I may have postponed my prophylactic surgeries until after achieving menopause.”
“I didn’t have to face Lynch syndrome alone after realizing that support is always available. That support system, as well as staying ahead on check-ups and focusing on my wellbeing, guided my path after being diagnosed.”
The landscape of Lynch syndrome has significantly evolved over the past decade, with advancements in genetic testing, universal screening and predictive models improving early detection.
https://www.curetoday.com/view/what-i-wish-i-was-told-about-lynch-syndrome
Lynch Decision Aid – Lynch Choices
“Please help us to make sure families with Lynch are invited to complete a short digital patient survey to tell us what they think, before we roll this out into clinical practice:
https://southampton.qualtrics.com/jfe/form/SV_1FvPJJEZPVX62aO
If you have an X/Twitter account, please see this post and share it if you can:https://x.com/kohut_kelly/status/1765675956159623324?s=20
SURVIVOR GUILT
Survivor guilt is common in Cancer Land.
Sometimes, you wonder why you’re still here when so many others, often with similar initial diagnoses to yours, are not. Adding guilt into the crapshoot is unhelpful and unnecessary. Nonetheless, add it in we do.
Patients’ satisfaction w/Lynch syndrome providers
This episode is the first in a series featuring former CGA-IGC research grant recipients.Features Dr. Allison Burton-Chase, MD from the Albany College of Pharmacy and Health Sciences. Dr. Burton-Chase was the first recipient of the CGA-IGC research grant in 2014 for her work entitled “Factors Impacting the Decision of an Individual with Lynch Syndrome to Terminate a Health Care Provider Relationship”.
The majority of patients who terminated their patient-provider relationships did so due to negative interactions, such as the provider having a lack of Lynch syndrome-specific knowledge or not being open to improving their knowledge on Lynch syndrome.
Transforming Lynch Syndrome Limitations Into Opportunities
“I had to transform my challenges into opportunities.”
The key to focus on when we are confronted with challenges is to become focused on what is possible rather than what is not.
https://www.curetoday.com/view/transforming-lynch-syndrome-limitations-into-opportunities
Lynch Syndrome
She With Lynch Syndrome
“The future is bright for those of us with Lynch syndrome and, most likely, for most of us with a hereditary cancer syndrome.“
She and all of the new medical advances for those with Lynch syndrome give me hope for if and when I ever develop cancer.
ThisisGO.ie
Another brilliant resource now available for women living with/beyond and with a predisposition to cancer.
Phase 3 live now
-400 women are diagnosed with Uterine cancer every year. 70-80% diagnosed are living with obesity.
Log on to https://thisisgo.ie/?fbclid=IwAR13F4M_K4vkAjBjD__7C7zDvxQdpgWuSW-IQnmA3JX9LePG9QDh9qay_X8 for accurate info.
Lynch Syndrome Ireland 