Author: Lynch Syndrome Ireland

Listen Very Carefully, I Shall Say This Only Once…

Picture this: You’re sitting in your GP surgery, desperately trying to convince your doctor that yes, you’d quite like a PSA test, thank you very much.

It’s 2025, and we’re still playing this ridiculous game where blokes have to practically beg for a simple blood test.

Prostate cancer is the most common cancer in men. One in eight of us….. will get it…..

So, dear healthcare policymakers, commissioners, and guideline writers:

Listen very carefully, because I shall say this only once – sort it out!
Men’s lives depend on it.

https://www.linkedin.com/posts/activity-7345045396571799552-B7hR?utm_source=social_share_send&utm_medium=member_desktop_web&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws

Everything you do has value and worth.

Everything you do has value and worth.

Even if society doesn’t value all my work, it is reminder that caring for others matters, running a household matters, building community matters and speaking up matters.

Many advocates are planting seeds for flowers they may never see fully blossom, whether it is with influencing positive health care change, or raising other human beings. But the planting matters.

https://www.suerobins.com/post/patient-advocate-resumé

The Waiting is the Hardest Part

Waiting. During a health crisis, time is not always a friend.

“Waiting defines my cancer experience. It is inhumane to wait two weeks after cancer-removal surgery before I have treatment information. I’ve since heard from other patients who have had to wait even longer to hear the results or to schedule doctor appointments.”

Ultimately, I’m waiting, waiting, waiting …

https://open.substack.com/pub/bethlgainer/p/the-waiting-is-the-hardest-part?utm_campaign=post&utm_medium=web

EU-CIP: Cancer Information Portal

The EU Cancer Information Portal will bring high quality, easy to understand, information for cancer patients and their families.

EU-CIP will also raise awareness of the EU Cancer Mission and Europe’s Beating
Cancer Plan.

They are building a home for reliable cancer information in the European Union.

Their goal is to facilitate access to general and personalised knowledge on cancer prevention, diagnosis, and treatment options.

They will create a common Library of Contents available to all EU Member States.

EU-CiP is for everyone! Cancer patients,Survivors,Families,Caregivers
and Healthcare staff.

https://www.europeancancer.org/resource/strategy-2024-2027.html

Meet Emilia, endometrial cancer patient support!

Throughout June, Emilia will share her whole story, from the first warning signs, diagnosis, through treatment, recovery, and life after cancer.Emilia will shine light on the patient pathway of endometrial cancer!

Emilia noticed she had some strange symptoms that wouldn’t go away.
It was scary, but she went to her doctor and explained her fear…..

https://www.linkedin.com/posts/esgo-engage_ucam-gyncancer-activity-7337731048492974080-f9nD?utm_source=share&utm_medium=member_desktop&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws
https://www.linkedin.com/posts/esgo-engage_ucam-endometrialcancer-gyncancer-activity-7340426395736522754-NRkt?utm_source=share&utm_medium=member_desktop&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws
https://www.linkedin.com/posts/esgo-engage_ucam-endometrialcancer-gyncancer-activity-7342491774105399299-JcZA?utm_source=share&utm_medium=member_desktop&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws
https://www.linkedin.com/posts/esgo-engage_ucam-endometrialcancer-gyncancer-activity-7344650980719812608-ylMM?utm_source=share&utm_medium=member_desktop&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws

Hospitals now have more consultants, but each specialist sees fewer outpatients than nearly a decade ago

Is this a fair Headline?

https://www.independent.ie/irish-news/hospitals-now-have-more-consultants-but-each-specialist-sees-fewer-outpatients-than-nearly-a-decade-ago/a688061544.html

It is a step in the right direction to publish this data. The dashboard is here: https://app.powerbi.com/view?r=eyJrIjoiNTFmZjkyOWEtYWQyOS00ZTUzLWIzNjctM2M2MGVhNzIzZDgxIiwidCI6ImYwNTQ1MjZhLTZiY2MtNGE3OC05OTg0LWZhYTNmZjQ1NTViMCIsImMiOjl9

@mccarthymt7 I presume the dataset is complete and accurate. For some context, 15 years ago, in a public hospital clinic, for example, a consultant and 3 NCHDs would have an OPD of 60-80 people to see “scheduled” for a 3-4 hour clinic, that would routinely run for 6 hours. The consultant gave an opinion, and dictated a letter.

Today, many new consultants are in the clinic alone. They see all the patients, type their own letters, book the scans, request the molecular tests, arrange the follow up visits, and organise the interventions (e.g. chemotherapy appointments) by themselves. Being a consultant has become a different job.

https://app.powerbi.com/view?r=eyJrIjoiNTFmZjkyOWEtYWQyOS00ZTUzLWIzNjctM2M2MGVhNzIzZDgxIiwidCI6ImYwNTQ1MjZhLTZiY2MtNGE3OC05OTg0LWZhYTNmZjQ1NTViMCIsImMiOjl9

Dr Kevin Monahan-Lynch Syndrome UK Annual Conference 2025

Lynch Syndrome where we were and where we are now.

“Prevention is better than cure – vaccination for Lynch syndrome”. Dr David Church

David Church is an Associate Professor, Cancer Research UK Advanced Clinician Scientist Fellow and group leader at the Centre for Human Genetics, University of Oxford, an Honorary Consultant Medical Oncologist at the Oxford Cancer Centre, and clinical lead for the NHSE Lynch Syndrome Transformation Project across the Central and South GMSA (population 10.5m).

His group’s research focuses on the identification and characterisation of novel biomarkers and therapeutic targets in endometrial and colorectal cancer, especially those relating to hyper/ultra-mutation and the anti-tumour immune response.

He leads the Genomics England 100K Genomes Project endometrial cancer domain and is a member of several clinical trial translational research groups including TransSCOT and TransPORTEC.

2025 LS UK Conference + 2024 event

Professor Emma Crosbie LS Annual Conference 2025

Endometrial cancer risks, periods, pregnancy, HRT and menopause.

Hereditary Cancer Syndrome Carriers: Feeling Left in the Corner

Objectives: There is limited evidence on health promotion interventions in people with hereditary cancer syndromes or on their main sources of support and information. This study aimed to understand these patients’ experiences and needs, including their information needs, their views on prevention and mental health, and the support they want from nurses. (small study)

Conclusions: People with hereditary cancer syndromes need professionals to be involved in their long-term management and to provide reliable information. As genomics are increasingly integrated in oncology, the need for professionals to support these populations will increase.

Implications for nursing practice: Nurses are crucial for promoting self-management and advocating for patient decision-making; however, they need skills and knowledge to do so. There is a need for nurses to get more involved in understanding hereditary cancer syndromes and an opportunity to take the lead in the care of these people.

https://pubmed.ncbi.nlm.nih.gov/38575458/

https://pubmed.ncbi.nlm.nih.gov/39313415/