Lynch  Syndrome  Ireland

Your Skin Is In: Dermatology and Lynch Syndrome

The Manchester International Consensus Group

Provides comprehensive clinical guidance that can be referenced by both patients and clinicians so that women with Lynch syndrome can expect and receive appropriate standards of care.

“Our key recommendations are as follows: The Manchester International Consensus Group recommendations for the management of gynecologicalcancers in Lynch syndrome:

(1) all stakeholders should be informed of the impact of Lynch syndrome on gynecological cancer risk;

(2) systems should be established to screen for Lynch syndrome in women with endometrial cancer;

(3) women at risk of Lynch syndrome should be offered risk-reducing hysterectomy with bilateral salpingo-oophorectomy, at a time appropriate to them; and

(4) further research is required to establish the value ofgynecological cancer surveillance in Lynch syndrome and toexplore other key areas where there is currently deficientevidence to define appropriate standards of care.

Screening for Lynch syndrome is only recommended if effective management exists to benefit those who screen positive.The strength of our guidance comes from the broad andexpert medical specialty representation that forms ourConsensus Group.”

https://pubmed.ncbi.nlm.nih.gov/30918358/

How did you discover the Lynch Syndrome cancer defect affected your family?

Philomena is a 2013 British-French drama film directed by Stephen Frears, based on the 2009 book The Lost Child of Philomena Lee by journalist Martin Sixsmith…….

I stood at the same door and spoke to the same Nun in 1994(the year I met my 47 y.o. sister for the first time).

In time this discovery led to learning I had inherited the MSH2 gene mutation and Lynch Syndrome affected my family.

“Having been through cancer and the shock of discovering he has Lynch syndrome, Andrew is well today but knows it is important to continue to be vigilant with both physical and mental health”

https://www.irishtimes.com/life-and-style/health-family/my-surgeon-got-straight-to-the-point-you-have-stage-three-colon-cancer-1.3849573#.X5KdBWPkCKQ.mailto

Prospective Lynch Syndrome Database

Cancer risk and survival in path_MMR carriers by gene and gender up to 75 years of age: a report from

the Prospective Lynch Syndrome Database.

www.plsd.eu

Let’s Talk about Dying: Part 2

“You exist in a kind of limbo, trapped between your old life and an almost inevitable early death. There’s only one way out, the only question is when?”

https://bowelcancerman.wordpress.com/2020/10/19/lets-talk-about-dying-part-2/

Understanding and Attitudes toward Cancer Clinical Trials among Patients with a Cancer Diagnosis: National Study through Cancer Trials Ireland

“Recognising and addressing these concerns may reduce anxiety and improve willingness to participate in CCTs. Improvement in information delivery on CCT concepts is warranted and tailoring communication of CCT information would be beneficial, particularly for the groups highlighted in the study that had lower levels of understanding. Patients in the study indicated that having a patient navigator would be a useful aid and consideration of the use of trained facilitators to support communication of the importance of clinical research may be advantageous.”

https://www.mdpi.com/770772

Guide to Lynch Syndrome

Thanks to The Royal Marsden (Published 2017)

Breast Cancer

Powerful Preventive Opportunity:

“Ireland’s small population offers an opportunity to identify all those with Lynch Syndrome (LS) in the country, which would represent a powerful preventive opportunity to meaningfully impact on the incidence of cancer in Ireland.”
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