Do I need to “beg” for my own information?
Is GDPR just an excuse to delay full access to our medical notes/tests?
Author: Lynch Syndrome Ireland
Call for people to mind their gut health and not ignore heartburn ahead of World Barrett’s Day
Barrett’s Oesophagus is a potentially pre-cancerous, inflammatory disease that affects the lining of the oesophagus (that is the 12-inch food pipe or gullet connecting your mouth to your stomach).
While it is estimated that over 35,000 people in Ireland could have Barrett’s, the majority are unaware, undiagnosed and possibly under the illusion that persistent heartburn or reflux is no big deal.
Furthermore, they don’t go to the GP and are treating it themselves with over-the-counter antacids for far too long, according to OCF.
Assessing preventive gynecologic decisions in individuals with Lynch syndrome
Highlights
- Current Lynch syndrome guidelines for managing gynecologic risks are vague and often left to a clinician’s discretion.
- Among 115 patients with intact uterus and/or ovaries upon Lynch diagnosis, 71 (61.8 %) underwent risk-reducing surgery.
- Older age, lower education, completed childbearing, and history of non-gyn cancer were associated with having surgery.
- Patients felt anxiety and frustration with the lack of provider knowledge and support to manage gynecologic cancer risks.
https://www.sciencedirect.com/science/article/abs/pii/S0090825825008297
What I Wish I Knew
What do you wish you knew then that you know now about your cancer experience?
https://womenofteal.blogspot.com/2025/05/what-i-wish-i-knew.html
Role of industry in drug ‘delays’ should be acknowledged
The timetable for access to new drugs in Ireland is “significantly” influenced by decisions made by the pharmaceutical industry, according to Prof Michael Barry, Clinical Director of the National Centre for Pharmacoeconomics (NCPE).
Medicines are often launched in larger European countries before Ireland. Prof Barry highlighted that the HSE has “nothing to do” with the decisions of the pharmaceutical industry.
@mccarthymt7 “When a process is designed to cause delays, and it results in delays”
What Is Peripheral Neuropathy?
If you’ve received chemotherapy as part of your colon cancer treatment, one of the side effects you may experience is numbness and tingling in you extremities, also known as peripheral neuropathy. It is damage to the nerves that transmit signals between the extremities and the central nervous system.
If you have numbness and tingling in your fingers or toes, notify your doctor immediately. Addressing peripheral neuropathy at the onset of symptoms can prevent a long-term problem. The numbness and tingling are the symptoms most often associated with peripheral neuropathy, though other symptoms exist. These include weakness, pain in the arms, hands, legs and/or feet, and abnormal sensations such as burning, tickling, pricking or tingling
Oxaliplatin chemotherapy, as well as other drugs for the treatment of colon cancer may cause peripheral neuropathy.
https://news.cancerconnect.com/colon-cancer/colon-cancer-understanding-peripheral-neuropathy
“Patients will die waiting for cancer treatment” – advocate
A study showed Ireland has the lowest availability for new cancer medicines in Western Europe. Of the 56 oncology medicines which were granted a European Medicines Agency (EMA) licence since 2020, only 14, or 25%, are currently available in Ireland.
It comes as figures show Ireland has the lowest availability for new cancer medicines in Western Europe, according to the Irish Pharmaceutical Healthcare Association (IPHA).
The United Cancer Advocates Network (UCAN) said there is no early access scheme in Ireland, so Irish patients are forced to wait for full assessments and negotiations with drug companies to take place.
“Medical Oncologists have a very peripheral role (and very little influence) in the HSE system for drug reimbursement. So far, to my knowledge, every approach made by medical oncologists to the HSE to address this issue has been listened to but ignored fully.” @mccarthymt7
https://www.rte.ie/news/health/2025/0507/1511477-cancer-drugs-ireland/
Neoplasia risk in patients with Lynch syndrome treated with immune checkpoint blockade(2023)
Metastatic and localised mismatch repair-deficient (dMMR) tumours are exquisitely sensitive to immune checkpoint blockade (ICB). The ability of ICB to prevent dMMR malignant or pre-malignant neoplasia development in patients with Lynch syndrome is unknown.
The data has implications for immunopreventative strategies and provide insight into the immunobiology of dMMR tumours.
It would be beneficial to evaluate the immunoediting effects of immunotherapy treatment amongst patients with LS and the implications they may have for future vaccine and immune intervention studies.
InSight
The International Society for Gastrointestinal Hereditary Tumours (InSiGHT) is a multidisciplinary scientific organisation, whose mission is to improve the care of patients and families worldwide with any hereditary condition resulting in gastrointestinal tumours.
They have nearly 300 members, including scientists, clinicians and other healthcare professionals, from all parts of the world.
Lynch Syndrome Risks
The Prospective Lynch Syndrome Database (PLSD) now provides the most accurate estimates of cancer risks in LS, both in individuals who have yet to develop a cancer and those who have survived a cancer. An individual’s risks can be found according to their age, gender and the underlying gene.
Lynch syndrome-related tumours include:
- Colon and rectal cancer
- Endometrial cancer
- Small intestine cancer (MSH2 & MLH1)
- Hepato-biliary and pancreatic cancer (MSH2 & MLH1)
- Gastric cancer (MSH2 & MLH1)
- Ovarian non-serous cancer (MSH2 & MLH1)
- Renal pelvis and ureter cancer (MSH2 & MSH6)
- Bladder cancer(MSH2 & MSH6)
- Sebaceous gland cancer (and adenoma – Muir-Torre syndrome)
- Prostate cancer (MSH2)
- Breast cancer (MLH1)
- Central nervous system cancer
The risks associated with some EPCAM deletions appear not to be restricted to GI cancers.
Lynch Syndrome Ireland 