Genetic testing “it can only help you if you are armed with more information…”
https://www.dropbox.com/s/3b5vrkyqzwbzcxl/JOANNE%20SLATTERY%20FINAL.mp4?dl=0
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National Cancer Registry Ireland Annual statistical report 2022
One notable milestone we report this year is that, by the end of 2020, for the first time, the number of people living after an invasive cancer diagnosis had exceeded the 200,000 mark to reach 207,000. This is equivalent to 4.2% of the population, or about 1 in 24 persons in Ireland, a >50% increase in numbers of cancer survivors compared with one decade ago. This reflects both an increase in the number of people being diagnosed with cancer every year and ongoing improvements in cancer survival, as also reported here.
FIT for Lynch Study
This research study is currently being offered in
several NHS Trusts within England and Scotland.
Contact: fitforlynchstudy@kcl.ac.uk
I have a VUS (Variant of Uncertain Significance) Now what?
When you agree to genetic testing, you expect a yes or no answer: yes, you have an abnormal change in a gene that increases your cancer risk, or no, you don’t. But sometimes, you might not get a clear “yes” or “no.” You might just get a “maybe.”
Are genetic variants of uncertain significance common?
Almost 20% of genetic tests identify a VUS. These tests come in different “sizes.” Some examine only a handful of genes associated with cancer at a time, while others analyze up to 80 genes. The more genes you look at, the more variants of uncertain significance you’ll find.
https://www.mdanderson.org/prevention-screening/family-history/genetic-testing.html
Lynch Syndrome- St Marks
Patient Information – 2019
- 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.
Right to be Forgotten…
A new Bill was recently brought before the Seanad will aim to ensure cancer survivors are not denied access to financial products like mortgage protection and insurance due to their medical history.
The Bill, which will seek to revise current legislation, outlines that a person seeking access to financial services will no longer have to declare a cancer diagnosis five years after finishing active treatment. The move is supported by the Irish Cancer Society.
THE VERDICT OF THE CITIZENS’ JURY ON THE FUTURE USE OF GENOMICS IN IRELAND
RECOMMENDATIONS
Genomics be used in health care in a targeted way for the purpose of diagnosing and treating disease. It should not be used for aesthetic purposes.
Strong protections, and appropriate, adequate supports are put in place to assist individuals, especially individuals from vulnerable groups, in making informed decisions around genomic testing options during their journey towards a diagnosis.
Individuals are given the option either during or following the genomic testing consent process to share their genomic data for the purpose of supporting health research. The research should contribute towards better health outcomes for individuals or for society, and this contribution should be clearly detailed and explained during the consent process.
Members of the public who consent to share their genomic data to health research should not receive any financial reward or preferential treatment from the health system or from third parties, for example, medical cards or discounted premiums.
See full report here:
We need to talk about “closed notes”(Files)
“If we can manage to have all these cancer diseases and to live with it, then we can handle reading about it.”
“In multiple studies, the majority of patients with experience of open notes report that reading their notes is very important for feeling in control of their care, remembering their care plan, and understanding why medications are prescribed. Patients report trusting their provider more, greater goal alignment, and teamwork. These benefits are reported most often among patients who are older, non-white, those with fewer years of formal education, or do not speak English at home. Older and chronically ill patients, in particular, appreciate the opportunity to share their notes with family and friend caregivers.”
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.
Ovarian Cancer -Know the Signs & Symptoms
There is currently no reliable screening test for ovarian cancer. Unfortunately, most women with ovarian cancer are diagnosed with advanced-stage disease (Stage 3 or 4).
This is because the symptoms of ovarian cancer (particularly in the early stages) often are not acute or intense, and present vaguely. In most cases, ovarian cancer is not detected during routine pelvic exams, unless the doctor notes that the ovary is enlarged.
The sooner ovarian cancer is found and treated, the better a woman’s chance for recovery. It is important to know that early-stage symptoms are not silent – so women should be extra alert and watch out for early symptoms.
