| 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. |
If you are a doctor or other healthcare professional who may be interested, videos from the conference for healthcare professionals are now online here.
You have just been diagnosed with Colorectal Cancer (also known as bowel cancer, colon cancer or rectal cancer). This Passport is a guide to your treatment and follow-up care (surveillance).
It aims to help you understand and keep a record of your treatment pathway. Please remember to bring it to each hospital/virtual appointment.
Just as everyone is different, everyone’s treatment will be different.
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.
What stories and what science do we find and share online when we are striving to connect with other “patients” or “carers” like us?
In this podcast, Stefania takes the case of two family cancer syndromes (BRCA and Lynch) to explore the way social media can shape everyday coping with the diagnosis of a rare or little known health condition.
https://offtheshelf.org.uk/event/digital-media-use-for-health-and-illness-dr-stefania-vicari/
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:
The strange juxtaposition of utter pain, destruction and sadness in my private life and the brave, strong and positive patient in public was stifling. I didn’t want to hear how I was an inspiration simply for trying not to die. I didn’t want to hear how brave I was. I didn’t want to hear how upset my own cancer made Sally from fifth grade (who hadn’t spoken to me since).
https://www.curetoday.com/view/patients-with-cancer-don-t-owe-grief-tourists-anything
“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.”
“Being research active, in my opinion, is fundamentally about our willingness and diligence, as patients, to ask questions and seek high quality evidence either as a patient, a health professional, and from an organisational standpoint.
As patients we need to ask for the evidence. We should be able to read about the findings in plain English. We must be part of a meaningful and informed conversation. We should have guidance on the questions to ask about whether to take part in research. We must be kept informed about the progress of individual studies. We should be able to find out how to get involved with researchers to inform, shape, and influence all aspects of the process. A research active patient might be described as purposely enquiring about evidence to support their own health.
For health professionals it may be about asking how research can assist in all stages of the patient pathway. It is where research moves from being a last option to a helpful guide. … A research active health professional might then mean being fully engaged with research as a means of benefiting patients through networking with colleagues and the public.”
Approximately 2,700 people are diagnosed with bowel cancer each year in Ireland.
Treatment options and survival rates are better than ever – especially when bowel cancer is found early.
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.
Lynch Syndrome Ireland 