Patient perspectives

The medical profession has become much more technologically advanced and aware of the importance of prevention and detection of disease before symptoms appear and before treatment becomes imperative. 

For patients, it is disconcerting to be offered choice in screening decisions or treatment options. … How does one choose without knowing what the doctor knows? The patient often feels a time pressure to decide …

Not everyone is able to clearly articulate their questions, fears, or values. It takes a skilled physician to determine if what is being said is what is meant. It also takes time, often more time than busy doctors have to devote to individual patients, but it is time well spent.

Everyone is different. Every disease takes a different path. Everyone has emotions and values and preferences. So—how to help?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5962996/

Constitutional (germline) vs somatic (tumour) variants?

Constitutional (also known as germline) variants are present in all the body’s cells, including the germ cells, and can therefore be passed on to offspring e.g. Lynch Syndrome; Somatic variants arise during an individual’s lifetime in tissues other than the germ cells and so are not passed on.

Constitutional (germline) variants in cancer predisposition genes are present in affected individuals in all the body’s nucleic cells, as well as the cancer genome, and may therefore be inherited. These underlie inherited cancer predisposition syndromes, such as Lynch syndromeand hereditary breast and ovarian cancer syndrome.

https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/constitutional-germline-vs-somatic-tumour-variants/#clinical-example-cancer

Cancer Genetics – Counselling Service in Ireland?

Coming to terms with a genetic predisposition to cancer in the family can leave a person with many questions. What does this mean for me? What does this mean for my child? Will my family be affected?

Is Ireland geared up to cater for the current and future demand in this area?

Is the Profession recognised in Ireland???

Do we provide training in Ireland???

Are counsellors registered in Ireland???

This article was written in 2019…has anything changed? @donnellystephen

https://www.irishtimes.com/life-and-style/health-family/genetic-counselling-answering-the-questions-after-the-diagnosis-1.3839162

“There are just 16 genetic counsellors working publicly and privately in Ireland…. Cancer Genetics Service at St James’s Hospital employs three trained genetic counsellors…..”

Has

MyLynch: Your Personal Cancer Risk

Help your Family by Sharing

MyLynch was built by cancer researchers and statisticians from the BayesMendel lab at Dana-Farber Cancer Institute and Harvard University to help people with Lynch Syndrome (LS) understand how their LS can increase the risk of different cancers and to show them what they can do to lower their risks.

Did you know:

1. Lynch syndrome cancers are preventable and can be caught early… if the person knows they have Lynch syndrome. Catching cancers early means saving lives.

2. Only 1 in 100 people with Lynch syndrome know they have it.

3. Your parents, siblings, and kids have a 50% chance of having Lynch; your grandparents, aunts, uncles, cousins, and grandchildren are also at risk.

Sharing your Lynch diagnosis with your family can save their lives. Almost all people with Lynch syndrome share their diagnosis with their parents, siblings, and children.

But…

Some people never tell their other relatives.

Save a Life

You could save the life of a family member if you choose to share your diagnosis.

Your doctor can help you make a plan to tell your family or you can use a website like Kin Talk (kintalk.org).

Lynch Syndrome- St Marks

Patient Information – 2019

  1. What is the chance of developing cancer if a faulty gene is found? Not everyone who carries a Lynch syndrome pathogenic variant will develop cancer. The risk of developing cancer is considerably lower in those who know they have Lynch Syndrome compared to those who have it but are unaware of the diagnosis.

Food and Cancer- Myths debunked

Food and Cancer- Myths debunked!

There is a lot of information available in relation to nutrition and cancer these days, and while often well-intentioned, it is not always based on scientific evidence.
Do you want to know if you should really be avoiding certain food groups? Increasing your intake of certain food groups?
This booklet aims to answer frequently asked questions….

Click to read the full booklet:
https://breakthroughcancerresearch.ie/the-truth-behind-food-and-cancer/

Watch LYNKED IN 2022

Hosted by Dana Faber Lynch Syndrome Center
You can now watch presentations from this year’s LYNKED IN conference on our YouTube channel.Hosted by Dana Faber -Lynch Syndrome Center, the 7th annual LYNKED IN conference for individuals and families of those with Lynch syndrome was held on Sept. 24, 2022.
Health Care Professionals

If you are a doctor or other healthcare professional who may be interested, videos from the conference for healthcare professionals are now online here.

Healthy Eating for Cancer Survivors

The term ‘cancer survivor’ commonly refers to a person that has been diagnosed with cancer at any stage during their lifetime and includes those who are undergoing treatment and those that have recovered from the disease.

The advice contained in this book is for cancer survivors who have been advised by their medical team to follow a healthy eating diet.

This book is also suitable for survivors who have finished their medical treatment and have been told they are in remission (given the ‘all clear’) from their disease, or those who have recovered from the disease.

St Mark’s Centre for Familial Intestinal Cancer

The St Mark’s Centre for Familial Intestinal Cancer (incorporating the Polyposis Registry and Family Cancer Clinic) is run by a team of specialists consisting of Colorectal Surgeons, Gastroenterologists, Nurse Practitioners, Nurse Specialists and Administrators.
The team works together to ensure prompt diagnosis and surveillance of patients with a genetic condition associated with bowel cancer or from a family at high risk of bowel and other cancers.

Our Services

We look after individuals and their families throughout their healthcare journey. We also provide education for healthcare professionals and the public and actively carry out research. If you are referred to us we will look after you and your family.

http://www.polyposisandlynch.com

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