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.
Author: Lynch Syndrome Ireland
The English National Lynch syndrome transformation project: An NHS Genomic Medicine Service Programme
The main barriers to universal testing identified relate to funding streams and systematic approaches to testing.
Conclusions: This ongoing transformational project is supported by high levels of engagement across stakeholders in England. Despite barriers, significant quality improvement has been implemented, facilitating systematic delivery of universal testing for LS nationally, with reduction in variation in care.
Where are we in Ireland in relation to achieving to Universal Testing??
GeNotes helps healthcare professionals make the right genomics decisions at each stage of a clinical pathway(NHS)
Put simply, GeNotes provides educational information at the point of need (In the Clinic), with opportunities for extended learning (Knowledge Hub).
In the Clinic
The ‘In the Clinic’ articles are focused on the point of patient care, and each concise article is centred around a clinical scenario. The articles are organised into clinical specialties, with oncology being the first of many (see ‘The GeNotes roadmap’, below).
In the Clinic articles are framed round two contexts:
- presentation, or testing, stage; and
- results stage.
Presentation articles are aligned to NHS England’s National Genomic Test Directory, and allow the clinician to:
- locate themselves through a generic clinical scenario;
- check whether their patient is eligible for genomic testing; and
- access information on how to request testing.
Results articles educate the clinician about the different types of results that may be returned and how these should or could be actioned, whether:
- clinically actionable;
- variant(s) of uncertain significance; or
- no clinically actionable variant identified.
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?
Advanced Prostate Cancer
Patient webinar for people with advanced prostate cancer, their caregivers, and their families.
Experts provide information and answer questions about advanced prostate cancer to help patients and caregivers compare, discuss, and select treatment options with their doctor.
NCCN Patient Webinar : https://youtu.be/OgqnEyEdzh0
Ovarian Cancer
Know What Your Doctors Know patient webinar for people with ovarian cancer, their caregivers, and their families.
Experts provide information and answer questions about ovarian cancer to help patients and caregivers compare, discuss, and select treatment options with their doctor.
NCCN Patient Webinar(2021) : https://youtu.be/ggsyEEW98PA
Cancer clinical trials – Ireland
Cancer trials test new and more effective ways to prevent, diagnose, and treat cancer.
Trials can involve testing new drugs or combinations of commonly used drugs, new therapies, new ways of treating cancer, or new ways of diagnosing cancer.
They may test new radiotherapy schedules, surgical techniques, medical devices, or physical therapies. They can also involve investigating blood samples and tissues.
City of Hope grows its genetic testing program
“Every mutation that is known to be associated with elevated cancer risk is actionable at some level,”
But that is not yet the standard of care. Yes, more and more cancer centers offer genetic testing.
https://www.cityofhope.org/city-hope-grows-its-genetic-testing-program
‘My cancer will eventually take my life, but not before I’ve lived it’
“Prostate cancer is the most common cancer affecting men in Ireland and early detection is vital to a good prognosis”
“I should of course have listened to the warning signals that my body was trying to tell me, but, more fool me, I thought I knew different.”
Discovering you have cancer is undoubtedly difficult, and John would advise anyone who has recently been diagnosed to accept all the support they are offered. He would also encourage everyone to be aware of any changes in their bodies and seek medical advice as soon as they spot any changes.
Transforming diagnosis of Lynch syndrome in the NHS, working together to “Find the missing 95%
This ongoing transformational project is supported by high levels of engagement across stakeholders in England. Despite barriers, significant quality improvement has been implemented, facilitating systematic delivery of universal testing for LS nationally, with reduction in variation in care.
Can we appoint Clinical Leads to champion & introduce Universal Testing at Cancer centres in Ireland to improve the service, prevent/detect early genetic cancers and provide a much improved service for people with an inherited predisposition to cancer?
Lynch Syndrome Ireland 