Lynch Syndrome Ireland

Remembering My Brother Who Died of Cancer

Survivor guilt is a complex emotion that often plagues those who have lost loved ones to illness.

I question myself with overwhelming questions often: “Why have I not developed cancer? Why have I outlived him? Why did he have to die?” And “What could we as a family have done differently?

I have turned my grief into action and strive to make a positive impact in the fight against Lynch syndrome and its devastating consequences — his death has not been in vain.

https://www.curetoday.com/view/remembering-my-brother-who-died-of-cancer

Landmark national study supports use of whole genome sequencing in standard cancer care(UK)

In the largest study of its kind, scientists today report how combining health data with whole genome sequence (WGS) data in patients with cancer can help doctors provide more tailored care for their patients.

This research uncovered significant findings across different cancer types, such as:

Over 90% of brain tumours and over 50% of colon and lung cancers showed genetic changes that could affect how patients are treated, guiding decisions about surgery or specific treatments they might need.
In more than 10% of sarcomas, larger DNA changes, known as structural variants, were identified that can impact clinical care and treatment.
In over 10% of ovarian cancers, the study pinpointed inherited risks offering crucial insights for clinical care.

The findings show the value of combining genomic and clinical data at scale to help healthcare professionals make the best treatment decisions with their patients.

https://www.genomicsengland.co.uk/news/landmark-national-study-supports-use-of-whole-genome-sequencing-in-standard-cancer-care

Hereditary Cancer Rounds – Describing the Real World Experience of Implementing a Pre-test GC Portal

Similar Population to Ireland

Had similar issues to Ireland…long waiting list for Genetic Counselling etc. Using technology they have improved their situation.

The Hereditary Cancer Program provides genetic counselling and genetic testing for BC/Yukon residents who may have inherited an increased risk for certain types of cancer.

An interactive animation about LynchSyndrome

https://leahhz.github.io/animation0621/

https://sites.google.com/sheffield.ac.uk/previvorship/outputs/mlh1

Patient-facing genetic and genomic mobile apps in the UK: a systematic review of content, functionality, and quality(2022)

This systematic review of patient-facing genetic/genomic mobile apps explores content, function, and quality.

Conclusion: It was evident that there are few high-quality genomic/genetic patient-facing apps available in the UK. This demonstrates a need for an accessible, culturally sensitive, evidence-based app to improve genetic literacy within patient populations and specific communities.

Has this changed?

Study: Immunotherapy improves outcomes of advanced endometrial cancer

Standard treatment for advanced endometrial cancer may soon change. A study found that people with advanced or recurrent endometrial cancer who received immunotherapy with chemotherapy had better outcomes than those who had chemotherapy alone.

https://www.facingourrisk.org/XRAY/immunotherapy-improves-advanced-endometrial-cancer-outcomes

Pembrolizumab plus Chemotherapy in Advanced Endometrial Cancer

CONCLUSIONS

In patients with advanced or recurrent endometrial cancer, the addition of pembrolizumab to standard chemotherapy resulted in significantly longer progression-free survival than with chemotherapy alone.

https://www.nejm.org/doi/full/10.1056/NEJMoa2302312

PROTECTOR study (UK)

Current research points towards ovarian cancer beginning in the fallopian tube and not in the ovary itself.

This is where PROTECTOR comes in, with the theory being that removing the tube alone will help prevent cancer while being able to preserve fertility and avoid early menopause which comes with symptoms and long term health issues like hot flushes, sweats, mood changes, thinning of the bones, memory problems, higher risk of heart disease, and reduced libido.