A cancer support centre provides emotional and practical support for people dealing with cancer. This includes those who have had a cancer diagnosis and their family and loved ones. Cancer support centres in Ireland are registered with the Charities Regulator. They are self-governed and self-funded.
Author: Lynch Syndrome Ireland
Understanding the treatment experiences of adults diagnosed with early-onset colorectal cancer: A qualitative study
Results
Results identified four key themes:
(1) early-onset CRC treatment results in sudden physical, psychological and social impacts in all aspects of life;
(2) early-onset CRC patients have unique supportive care needs which are not recognised in current practice;
(3) there is a need for tailored information;
(4) a lack of support was identified in the areas of mental health, sexual health and fertility.
Conclusions
Study highlights numerous unique issues experienced by the early-onset CRC patient group during treatment. There is a need for change in clinical practice, along with the development of international guidelines and tailored resources for both patients and healthcare professionals, in order to improve care.
New national electronic patient health record system proposed
About time….loooong overdue.
Ireland has a Digital Health Strategy, but currently no centralised electronic health record system is in place.
The system allows 24-hour access by doctors and patients to their health information using a secure, free, open-source non-commercial platform.
It has been piloted by the HSE and is currently operational for around 15,000 patients, including Ukrainian refugees, International Protection Applicants, the homeless, the Roman Community and others.
It envisages that doctors will be able to access them in real time, from any location, reducing duplication of tests and making the system more efficient and safer.
https://www.rte.ie/news/health/2024/0626/1456756-digital-health/
The Beginning
Why am I back? Well, I got cancer.
If you are like me or close to someone like me, I wish to lighten your load with this blog and maybe give you a laugh every now and then.
Lynch Syndrome
- Lynch Syndrome involves several inherited genes which normally protect the body from cancer, but mutations in any of these genes may inhibit this function.
- If someone has a Lynch Syndrome mutation it does NOT mean they will definitely get cancer, there are other factors involved.
- If you have one of the Lynch Syndrome mutations, this has implications for your family. Your elders, siblings and offspring. If they too have the same mutations, they will be more susceptible to bowel and other cancers.
- You should contact members of your family and advise them to get tested.
- Anyone with Lynch Syndrome can reduce their cancer risk.
- People with Lynch Syndrome are entitled to advanced cancer screening, to catch cancer early and cure it.
- There is evidence that some people with Lynch Syndrome diagnosed with a bowel cancer are more likely to develop secondary cancers.
Adventures in Annual Endoscopies
Today was the day of my annual endoscopies – a flexible sigmoidoscopy, a gastroscopy, and a capsule endoscopy placed via gastroscopy.
Every little win is a win. There’s no point just bouncing onto the next worry, especially if it might never come.
Find joy now, in getting at least one out of three clear tests, and freedom to eat an ice cream sandwich.
National Cancer Strategy(2017-2026) has only been adequately funded in two of the last seven budgets.
As a result, the Irish Cancer Society is calling for:
- An additional €20 million in 2025 in new recurrent funding for the National Cancer Strategy.
- An assessment of the funding needs of cancer services, above this €20 million minimum additional annual funding level, to ensure full implementation of the National Cancer Strategy by 2026.
- End the recruitment embargo by allocating the necessary funding to fill crucial healthcare sector posts based on up-to-date workforce plans.
https://www.cancer.ie/about-us/cancer-advocacy/prebudget-submission-2025
Dominantly inherited micro-satellite instable cancer – the four Lynch syndromes – an EHTG, PLSD position statement
In the Lynch syndromes (LS) we now recognize a dynamic balance between two stochastic processes: MSI producing abnormal cells, and the host’s adaptive immune system’s ability to remove them.
The latter may explain why colonoscopy surveillance does not reduce the incidence of colorectal cancer in LS, while it may improve the prognosis.
Most early onset colon, endometrial and ovarian cancers in LS are now cured and most cancer related deaths are after subsequent cancers in other organs.
Aspirin reduces the incidence of colorectal and other cancers in LS.
Immunotherapy increases the host immune system’s capability to destroy MSI cancers.
Colonoscopy surveillance, aspirin prevention and immunotherapy represent major steps forward in personalized precision medicine to prevent and cure inherited MSI cancer.
The Prospective Lynch Syndromes Database (PLSD)
cumulative risks for cancer in organs at increased risks by age, genetic variant, and sex in carriers subjected to colonoscopy.
Version 5 corresponding with PMID: 37181409 and PMID: 37821984.
Aims of PLSD
Based on the observation that removal of adenomas with colonoscopy did not reduce CRC incidence as assumed, in 2012 the European Hereditary Tumor Group (EHTG), at that time denoted the Mallorca Group, decided to compile information on follow-up of path_MMR carriers across multiple specialist centres to answer three questions:
- To what degree does colonoscopy surveillance reduce CRC incidence in path_MMR carriers?
- What is the penetrance and expressivity of pathogenic variants in each of the four Lynch syndrome-associated genes?
- What is the survival of carriers when followed-up as recommended, to facilitate early diagnosis and treatment?
Modifiable risk factors for cancer among people with lynch syndrome: an international, cross-sectional survey
Lynch syndrome is the most common cause of hereditary colorectal and endometrial cancer. Lifestyle modification may provide an opportunity for adjunctive cancer prevention. In this study, they aimed to characterise modifiable risk factors in people with Lynch syndrome and compare this with international guidelines for cancer prevention.
Conclusions
They have characterised the modifiable risk profile of people living with Lynch syndrome, outlining targets for intervention based on lifestyle guidelines for the general population. As evidence supporting the relevance of modifiable factors in Lynch syndrome emerges, behavioural modification may prove an impactful means of cancer prevention.
https://hccpjournal.biomedcentral.com/articles/10.1186/s13053-024-00280-w
Lynch Syndrome Ireland 