Author: Lynch Syndrome Ireland

Understanding Immunotherapy Side Effects

Immune checkpoint inhibitors (a type of immunotherapy) offer a promising new way to treat cancer for some patients. But these medicines can cause your immune system to attack normal organs and tissues in your body, affecting the way they work.

Preventing Lynch Syndrome Cancers: Study Suggests Immunotherapy Could Work….https://www.mskcc.org/news/preventing-lynch-syndrome-cancers-new-study-suggests-immunotherapy-could-work

No matter where your cancer began, side effects from immunotherapy can affect your whole body.

https://www.nccn.org/docs/default-source/patient-resources/immunotherapy_infographic.pdf?sfvrsn=f92249ca_36

Cancer-Related Fatigue

Fatigue is a common side effect that may linger for years following cancer treatment. Experts and survivors talk about ways to help find a balance between life and fatigue.

The best way to describe it is the fatigue someone feels when they have the flu..

Cancer-related fatigue is a common side effect, especially because it can be caused by both the cancer and its treatment, according to guidelines from the National Comprehensive Cancer Network. This type of fatigue may last months to years after the end of treatment and “does not improve with normal amounts of rest or sleep and disrupts daily life,” the guidelines state.

A significant intervention that has been shown to help with managing cancer-related fatigue is exercise or a type of physical activity.

If people have cancer-related fatigue, energy conservation is something we talk about a lot, try to conserve your energy to do the things you would like to do….. 

https://www.curetoday.com/view/focusing-energy-on-cancer-related-fatigue

Source credibility: a necessary North Star in cancer care

For millions of healthcare providers it is their “go to” source for treatment planning for patients.

For patients and their families it is an essential repository for access to information, access to charitable support services, access to clinical research options and access to patient communities who have invaluable, shared, lived experiences.

Ensuring that the internet remains a trusted resource for ALL is in everyone’s interest, including those who profit from it.

https://www.nature.com/articles/s44276-024-00075-5

Endometrial, Ovarian, and Other Lynch Syndrome–Associated Cancers

For women with Lynch syndrome, endometrial cancer and ovarian cancer represent the second- and third-most common associated malignancy, respectively, after colorectal cancer. 

Despite gaps in knowledge, most guidelines currently recommend consideration of risk-reducing hysterectomy and salpingo-oophorectomy at the completion of childbearing and/or in the early 40s, with consideration of annual transvaginal ultrasound and endometrial biopsy at age 30 to 35 (continued until risk-reducing surgery).

https://ascopubs.org/doi/10.1200/EDBK_208341

Health Information Bill 2024

Aims to improve the use of health information in Ireland. Health information is generated every time a patient interacts with a health service. For example, when a person sees a doctor or nurse, the details that are recorded become health information. How this information is used is key to supporting integrated care. The right information needs to be available in the right place, at the right time, to ensure the best care and treatment for patients.
The Health Information Bill helps to achieve this-has a priority focus on digital health records and primary use.

Purpose of the Bill:
Provides for the following in Irish law:

  • A ‘duty to share’ health information for patient care and treatment
  • The establishment of Digital Health Records for all patients in Ireland
  • Greater patient access to their own health information
  • Greater protections around health information for primary use
  • Better health information for the HSE for public-interest purposes.

https://www.gov.ie/pdf/?file=https://assets.gov.ie/299643/22ca227b-e926-419c-9780-fc41f8dcfddc.pdf#page=null

Inaugural Cancer Genetic Counselling Conference: Connecting Research and Practice

Date and time: Thu, 14 Nov 2024 09:00 – 16:00 GMT
Location: Guinness Enterprise CentreTaylor’s Lane Level 4, Conference room 1-2 Dublin 8

Join us for a day filled with insightful discussions, networking opportunities, and the latest advancements in cancer genetic counselling.

Don’t miss this chance to connect with experts in the field and learn about cutting-edge research that can enhance your practice.

Secure your in person or online attendance now!

https://www.eventbrite.ie/e/inaugural-cancer-genetic-counselling-conference-connecting-research-and-practice-tickets-959444734027?aff=oddtdtcreator

Gain a Certificate in Cancer Genetics and Genomics

https://courses.rcpi.ie/product?catalog=Certificate-in-Cancer-Genetics-and-Genomics&utm_source=facebook&utm_medium=paid-social&utm_campaign=fy25_cancer_genetics&utm_term=list_look&fbclid=IwY2xjawE-ZJ9leHRuA2FlbQIxMQABHZF7OCVxh5z9kukReSl_l0qJwN5Yb8vQAPQT5-IyUh0c9vtkDN9iEKhvgA_aem_LLejKDkdPzFMEs9hAEPlTQ

This 11-month programme contains a mixture of asynchronous and synchronous material and is delivered virtually so can be completed anywhere in the world for those who wish to advance their academic and professional knowledge and skills in the area of Cancer Genetics and Genomics.

The programme is interdisciplinary and welcomes those with a minimum requirement of a degree in a relevant healthcare or biomedical subject. A strong background in basic science is encouraged, and eligible learners should be working at a senior level in a research role or healthcare discipline involving the care of patients with cancer.

This programme will lead to Certificate in Cancer Genetics and Genomics for all other learners.

For Ireland based learners, their qualification is accredited at QQI Level 9 on the National Framework of Qualification (PG25033). 

2024 IGCS-IGCAN Gynecologic Cancer Survivor-Caregiver Summit – Dublin

Advocacy Summit

Initiatives Promoting Equity, Diversity, and Inclusion in Patient Outreach Projects (IGCS Grant Recipients)

  • HER REASON FOR BEING: A Multifaceted Community-Based Project to Advance Cervical Cancer Prevention and Awareness
  • Nan men gran m’et la: Pilot Palliative Care Intervention for Vulnerable Women with Advanced Cervical Cancer in Haiti
  • Acceptability of Self-Sampling for Cervical Screening in the LGBTQIA+ Population – The Alternative Cervical Screening (ACES) LGBTQIA+ 2 Study

Empowered by Experience: Insights on Cancer Survivorship

  • The Public Narrative: Using your Lived Experiences to Call for Action
  • Key Findings from the IGCAN Survivorship + Caregiver Survey
  • Voices of Resilience: Survivorship Panel Discussion

Agents of Change: Patient Advocacy Organizations in Action

  • Every Woman Study™ LMIC Edition: World Ovarian Cancer Coalition
  • Ovarian Cancer Australia

A Clinical Perspective: Genetics & Clinical Trial Updates

  • Genetics in Gynecologic Cancer: Enhancing Understanding and Treatment
  • Recent Discoveries in Gynecologic Cancer Clinical Trials

ThisisGo.ie

thisisGO.ie is an online personalised resource for you and yours who have been impacted by a gynaecological cancer.

Also contains: genetic pathway for those impacted by BRCA and Lynch Syndrome. 

Did you know that all national clinical and non clinical trials can be found on the homepage. If your trial is not up there email contact@thisisgo.ie

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Attention family & friends of Prostate Cancer Patients

Know anyone who has suffered through prostate cancer? We’re looking for the stories and voices of their support-givers. Share and register now at: https://eventbrite.ie/e/prostate-cancer-support-giver-symposium-tickets-980034027157