Author: Lynch Syndrome Ireland

If a woman is diagnosed at stage 1, she has a 90% of surviving at five years or more. However, only 33% of women are diagnosed at this stage.

You can find out more ovarian cancer statistics here: https://t.co/J7E0gO7nh8 pic.twitter.com/JYRF8YVIaG

— Ovarian Cancer Action (@OvarianCancerUK) April 20, 2022

A vaccine against cancers caused by Lynch syndrome — an inherited disorder — will be among the first to test if a vaccine can stop nonviral cancers from appearing. The Lynch trial is among several looking to test a new generation of preventative cancer vaccines.

Recently, scientists have discovered that a type of immune cell known as a T cell is capable of recognizing the unique signatures of a tumor cell — and giving them the business. 

Therapies designed to increase T cell’s killing power and ability to target cancer after it appears have already been approved, and they can be quite successful at treating some cancers. (More recent work is recruiting another type of immune cell, the awesomely named natural killer cells, to fight cancer.)

https://www.freethink.com/health/preventative-cancer-vaccines

Endometrial cancer is the most common gynaecological cancer in high-income countries and incidence is rising globally.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)00323-3/fulltext?utm_campaign=lancet&utm_content=204550716&utm_medium=social&utm_source=twitter&hss_channel=tw-27013292

Medical literacy is important, but not everybody is medically educated. Sometimes it is hard for the patient to know every detail and to know what is significant and potentially life-threatening and what isn’t and what questions to ask. It should be the duty of the doctors and the labs to explicitly, and in simple terms, explain what a positive or out-of-range test might mean for the patient – and sometimes even relatives.

https://www.curetoday.com/view/inclusion-in-cancer-care-takes-an-effort-on-all-fronts

“…the ability to prevent colon cancer…”

Highlights

• Lynch Syndrome is a hereditary cancer condition, mainly impacting colon cancer.
• Being identified as having Lynch Syndrome can be distressing.
• Those with Lynch Syndrome find difficulty in navigating the health care system.
• There is a perceived lack of knowledge in the medical field about Lynch Syndrome.
• A model of care for people with Lynch Syndrome could assist with the distress felt.

https://www.ejoncologynursing.com/article/S1462-3889(22)00025-4/fulltext#main-menu

David Dubin’s most recent Podcast….

I sit down with my cousin from another mother Pat Fahey, founder of Lynch Syndrome Ireland. Pat talks about his long lost sister in the States and her history with cancer and how she found him. Pat talks about why he started LS Ireland and his associate Roberta Horgan. https://www.aliveandkickn.org/podcast/episode/1aaf3ec6/aliveandkickn-podcast-pat-fahey.

So why is this?

Well, we all have the Disability Act 2005 to thank.

This pretty sound piece of legislation prohibits the insurance companies from asking about genetic tests

When you apply for life insurance, you must disclose a certain amount of personal information, such as:

• Family medical history
• Personal medical history – Your insurer may ask for access to your medical records, but you have to provide your permission for this.
• Your age
• Height & weight
• Whether you are a smoker or a drinker
• Any prescription drugs you take
• Your occupation – high-risk occupations can increase your premiums)
• Any hazardous hobbies you take part in
• Star sign
• Pet’s name
• Mother maiden name
• How many photos contain traffic lights

And that’s just to name a few.

Insurers are pretty damn thorough when it comes to how they calculate your life insurance premium.

They’ll ask for as much information as they can get away with, but any genetic testing results you have are a no-fly zone. (www.lion.ie)

You won’t find a genetic testing question on a life insurance application, but you will find the following guidance:

However, it is important that you are aware that in accordance with the provisions of Part 4 of the Disability Act 2005
you should NOT disclose the result of any Genetic (DNA or RNA) test. Some medical conditions are genetic and can be
passed from generation to generation. Advances in medical science have made it possible in certain circumstances to take
a genetic test and to ascertain if a specific condition has been passed on. If you have had such a genetic test then you
should not disclose it.

And if you look hard enough, you will also spot this paragraph:

You must disclose if you are having treatment for, experiencing symptoms of, or having investigations (other than a genetic
test) for a genetic condition as well as disclosing all other conditions.

However, it is important that you are aware that in accordance with the provisions of Part 4 of the Disability Act 2005
you should NOT disclose the result of any Genetic (DNA or RNA) test. Some medical conditions are genetic and can be
passed from generation to generation. Advances in medical science have made it possible in certain circumstances to take
a genetic test and to ascertain if a specific condition has been passed on. If you have had such a genetic test then you
should not disclose it.

And if you look hard enough, you will also spot this paragraph:

You must disclose if you are having treatment for, experiencing symptoms of, or having investigations (other than a genetic
test) for a genetic condition as well as disclosing all other conditions.

Does Genetic Testing Affect The Cost of Life Insurance?

Does Genetic Testing Affect The Cost of Life Insurance?

Does Genetic Testing Affect The Cost of Life Insurance?

An update on the latest research for people with Lynch syndrome. Presented by Matthew Yurgelun, MD (Dana-Farber Cancer Institute). (FORCE 2021 Conference)