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Ciara shares how knowledge of her Lynch Syndrome status enabled her to avail of risk-reduction measures that prevented endometrial cancer

We wish to thank Ciara for allowing us to share her story for World Gynaecological Oncology Day. Ciara hopes by sharing her story she can raise awareness of the role genetic risk-factors play in the development of gynea cancers and give hope to others 💜

Over the years, I was aware of Lynch syndrome due to several members of my Mum’s family having it. My great aunt had wrote out a family tree of all family with the inherited gene. That valuable information was then transferred to the genetics clinic.

After a blood sample in 2017, the genetics clinic confirmed that I had Lynch Syndrome with MSH2 gene alteration. It was recommended that I go for a colonoscopy every two years.

Two years ago I was referred to the Gynaecology department for surveillance. Blood tests, ultrasound tests and endometrial biopsies were offered. It was then I started to research the lifetime risk of endometrial cancer associated to MSH2 (40-60%) and understand the importance of surveillance. My endometrial biopsy confirmed I had atypical endometrial hyperplasia which is a pre-cancerous condition of the uterus. Having risk reducing surgery at 44 was the only and logical thing to do my situation. It has been a lot to process emotionally at times, but I am fortunate to have a loving partner, friends, family and other outlets for support. Under the exceptional care of Dr Astbury and her team at UHG, I had a full abdominal hysterectomy in February this year and have recovered well. I am very lucky the endometrial biopsy surveillance was done when it was. The early detection prevented me from needing further treatment after my surgery. I will be forever grateful for everything Dr Astbury and her team have done in order to protect my health.  

Ciara Donoghue

#WorldGODay2024 #GynaeCancers #riskfactors #earlydetection #HereditaryCancers #CancerGenetics

 End the Stigma surrounding gynaecological cancers on this World Gynaecologic Oncology Day 

 One in Seven Women in Ireland Avoid GP Visits Due to Embarrassment Discussing Symptoms.

  • Almost 2,000 Women Diagnosed with Gynaecological Cancers Across Ireland Annually 
  • Only two in five recognise abnormal bleeding or discharge as symptom of uterine cancer 
  • Only a quarter of women identify changes in urinary habits as symptom of vaginal cancer 

Today is World GO Day or World Gynaecologic Oncology Day where patients and advocates around the globe unite to raise awareness about all five gynaecological cancers (vulval, vaginal, cervical, uterine and ovarian) and their risk factors and to combat the stigma associated with gynaecological cancer.

The Irish Network for Gynaecological Oncology (INGO), a voluntary coordination body consisting of over 30 of Ireland’s foremost gynecological cancer campaigners, researchers and patient advocates aim to educate people about the importance of sharing information in relation to prevention, symptoms, early diagnosis and treatment. 

Research commissioned by INGO shows that stigma surrounding gynaecological cancers and their symptoms can prevent some women from attending their doctor with warning signs. 

One in seven women in Ireland said they would not attend a doctor with cancer warning signs as they find it embarrassing to discuss symptoms, and one in five would not go to the doctor as they do not want to talk to the GP receptionist about symptoms. Furthermore, one in three would not attend if they found it difficult to get an appointment with a particular doctor.

This World GO Day, Fri 20th September, INGO are hosting a free webinar at 1pm for anyone who would like to learn more about the five gynaecological cancers and their symptoms, with insights from cancer patients and medical professionals.

Register for the webinar at http://www.bit.ly/GO_symptoms 

http://www.isgo.ie/irish-network-for-gynaecological-oncology/ 

#WorldGODay2024

Knowing your family history

Knowing your family history of cancer is a critical aspect of cancer prevention and early detection.

Many types of cancer, including Lynch syndrome-related cancers, have a hereditary component. This means that individuals with a family history of cancer may be at increased risk for developing the same or related types of cancer.

The more you know about your family’s cancer history, the better equipped you will be to make informed decisions about your own health and to take proactive steps to reduce your risk of cancer.

https://www.aliveandkickn.org/knowing-your-family-history

Womb Cancer: Risk Factors and Prevention

Lynch syndrome may affect up to 175,000 people in the UK and is linked to 3% of cases of womb cancer. To develop Lynch syndrome, you need to have one parent that carries the gene. Someone diagnosed with Lynch syndrome has up to 60% chance of developing womb cancer in their lifetime. Lynch syndrome is also associated with an increased risk of bowel cancer. Those diagnosed with Lynch syndrome undergo regular tests to check for bowel cancer and womb cancer, many will be offered a hysterectomy (operation to remove the womb) to prevent womb cancer once they feel their family is complete.

Lynch syndrome is often diagnosed when a strong family history of bowel or womb cancer is noted. If you feel this may apply to you, please speak to your doctor about being referred to a genetics service. More information on Lynch syndrome can be found here.

https://peachestrust.org/womb-cancer/risk-factors-prevention/

Neoadjuvant Immunotherapy in Locally Advanced Mismatch Repair–Deficient Colon Cancer

Mismatch repair–deficient (dMMR) tumors can be found in 10 to 15% of patients with nonmetastatic colon cancer {(dMMR) is a characteristic feature of cancers linked to Lynch syndrome}. In these patients, the efficacy of chemotherapy is limited. The use of neoadjuvant immunotherapy has shown promising results, but data from studies of this approach are limited.

In patients with locally advanced dMMR colon cancer, neoadjuvant nivolumab plus ipilimumab had an acceptable safety profile and led to a pathological response in a high proportion of patients. (Funded by Bristol Myers Squibb; NICHE-2 ClinicalTrials.gov number, NCT03026140.)

https://www.nejm.org/doi/abs/10.1056/NEJMoa2400634?fbclid=IwY2xjawFHmDxleHRuA2FlbQIxMAABHUNVI8L9tFqyfOf8VgXnMe_FQD66QeQWgeuBcx6KbHEhc5aNVAnwqeltcA_aem_N86c6H8pvNxiA7eu28_H-Q

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