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LYNKED IN is a free annual, one-day educational conference for individuals with Lynch syndrome, their families, and caregivers, hosted by the Lynch Syndrome Center within the Division of Cancer Genetics and Prevention at Dana-Farber Cancer Institute.

This conference provides attendees with updates on guidelines for screening and prevention, strategies for communicating with your family, and advances in the treatment of Lynch syndrome. The goal is to connect and empower Lynch syndrome families.

Register here:

https://redcap.partners.org/redcap/surveys/?s=P4CC3W9THRCXA9EH

Lynch Syndrome information

This programme is part of the Irish Cancer Society’s Women’s Health Initiative (WHI), the aim of which is to improve health and wellbeing for women impacted by cancer who are dealing with the side effects and consequences of treatment.

Phases of thisisGO

Phase 1 was launched on September 20th 2021.  It is a personalised
online resource for women impacted by cervical cancer. If you have a partner in
your life, this platform can also support them. If you are a health care
provider working in the area this can also support you and your
practice. 

If you are newly diagnosed, receiving treatment, in surveillance
or living well with and beyond cancer thisisGO.ie has information that is
tailored to meet your needs.

Phase 2 covered ovarian cancer and was launched on the 4th of
February 2022

Next Phase due shortly will cover Genetic Cancers including BRCA and Lynch Syndrome

It is hoped that the remaining three gynaecological cancer and
GO cancer genetics will be complete before the end of 2022.

If you are experiencing any of the symptoms in the chart below for more than two weeks, please make an appointment to see your doctor to discuss further.

You may feel embarrassed discussing some of these symptoms, this is normal, your doctor is here to help, and it may save your life.

(www.thisisgo.ie)

Did you know that more Irish women die from ovarian cancer than any other European country? I didn’t.

One of the main reasons for this is because symptoms can be vague, and the majority of women (75%) are diagnosed with late-stage disease.

Neither of us want to be part of these statistics but symptoms can be vague and similar to other conditions such as irritable bowel syndrome.

Contact your GP if you have any of these BEAT symptoms for three weeks or more as these may be warning signs of ovarian cancer:

                            ·  B loating that is persistent and doesn’t come and go 

                            ·  E ating less and feeling full more quickly 

                            ·  A bdominal and pelvic pain you feel most days 

                            ·  T oilet changes in urination or bowel habits 

https://www.rte.ie/player/series/today/SI0000000197?epguid=IH000403530

Dr Doireann O’Leary (@WorldOvarianCancerDay @RTEToday) talks about the importance of being symptom aware and shares the meaning of BEAT.

She also talks about the importance of ‘the big T’, ie getting Treatment early. If someone has these symptoms it likely is something less serious than Ovarian Cancer but the most important thing is not to brush it off, do go to your GP and get checked and try to get in to the habit of doing that. Building this habit greatly increases the chances of early diagnosis.

https://www.wellbeingofwomen.org.uk/news/a-gp-blood-test-that-could-help-diagnose-ovarian-cancer-faster-and-more-accurately

“This is the first time that HE4 has ever been evaluated in a primary care setting, so it will be exciting to see larger-scale studies implemented to further assess its effectiveness as a diagnostic aid. Earlier diagnosis will have important implications for women’s treatment, care and ultimately, survival.”

If you have been diagnosed with Lynch syndrome, you have may questions about your medical care. This page from the USA has information on cancer risk, screening, prevention and treatment for people with an inherited mutation in a Lynch syndrome gene. 

https://www.facingourrisk.org/portal/people-with-lynch-syndrome?utm_source=Pardot&utm_medium=email&utm_campaign=National_Update_May_2022

https://www.bmj.com/content/377/bmj-2021-066720

Key messages

• Some commonly used language in healthcare confers petulance on patients, renders them passive, or blames them for poor outcomes
• Such language negatively affects patient-provider relationships and is outdated
• Research is needed to explore the impact that such language could have on patient outcomes
• Clinicians should consider how their language affects attitudes and change as necessary