A Guide to Lynch Syndrome

Lynch Syndrome 

Lynch Syndrome is an inherited condition that increases your risk of developing some cancers, including bowel, womb and ovarian cancer. We have developed a guide to run through everything you need to know about Lynch.

A Guide to Lynch Syndrome 

You can download a copy here

This guide has been made with input from experts, people with Lynch Syndrome and our Ask Eve nurses to provide you with all the information you need when offered testing for, or navigating a diagnosis of, Lynch Syndrome.  

We also have an Easy Read guide to Lynch Syndrome, which you can download here 

Lynch Syndrome

Online personalised resource for you and yours who have been impacted by a gynaecological cancer.

Gynaecological cancers refer to any cancer of the female reproductive system which includes the uterus (womb), the ovaries, the cervix (the neck of the womb), the vulva (the outer part of the female genitals) or the vagina.

Ovarian cancer and was launched in February 2022 and the genetic conditions, BRCA and Lynch Syndrome, were added in May 2022.  Uterine cancer went live in September 2022.  Vulva cancer and vaginal cancer will be live before the end of 2022.

Just log on to https://thisisgo.ie and select “My Profile”

Lynch Syndrome and the Risk of Ovarian Cancer

Lynch syndrome increases the risk of many different types of cancer, including ovarian cancer. The exact level of risk depends on which gene contains the mutation.

Overall, ovarian cancer is rare. The American Cancer SocietyTrusted Source estimates that 1 in 78 (1.2%) of people with ovaries will develop ovarian cancer during their lifetime. Additionally, more than half of people receive a diagnosis at age 63 or older.

In contrast, people with Lynch syndrome have a 3% to 17% lifetime risk of developing ovarian cancer. They also often develop cancer at a younger age than people without Lynch syndrome.

https://www.healthline.com/health/ovarian-cancer/lynch-syndrome-ovarian-cancer#ovarian-cancer-risk

World Ovarian Cancer Coalition- Impact Awards 2022

Impact Award Recipients Announced

Toronto, Ontario, November 30, 2022 – With a formal ceremony set to take place on 1 December 2022 today the World Ovarian Cancer Coalition announced that the Irish Network for Gynaecological Oncology (INGO) is among the list of this year’s recipients of the second annual World Ovarian Cancer Coalition Impact Awards. 

Nine awards in 5 categories will be handed out at the Coalition’s 2nd Annual Global Partner Meeting, being held virtually November 30 and December 1st. Winner in the Inspiring Collaborations category, The Irish Network for Gynaecological Oncology, comprising of over 30 of the country’s foremost gynaecological campaigners, researchers and patient advocates, underscores the immense value of partnership as they work together in unison to raise awareness in Ireland. 

Dr. Sharon O’Toole, Trinity College Dublin and Coordinator of the World Ovarian Cancer Day campaign at INGO outlined her extreme pleasure in accepting this award, “I am so proud of the INGO network and their dedication to raising awareness. Our World Ovarian Cancer Day awareness campaign focussed on symptom awareness following the stark findings that 4 out of 5 women in Ireland were not confident in recognising the symptoms of ovarian cancer.These findings combined with Ireland having one of the worst mortalities in Europe from ovarian cancer, are key drivers for our network. In order to reach a wider audience in 2022, we had the pleasure of working with The Reputations Agency where all expectations were exceeded in terms of impact, with a media reach of over 8.3 million people for World Ovarian Cancer Day. Our network allowed us to reach all corners of the country, spreading awareness on a regional basis as well as nationally. We are delighted that the World Ovarian Cancer Coalition has recognised our network in the Inspiring Collaborations category.”

Anne Murphy, a member of the INGO Network explained, “As an Ovarian cancer survivor, an advocate and an Oncology nurse by profession, I am so proud to be part of this inspirational group. I have witnessed through my involvement with the group the passion and determination and willingness of all involved to raise awareness and improve the dreadful mortality rates of Ovarian Cancer in Ireland. This organisation has grown year on year. This year was our most impactful in reaching communities at every corner In Ireland. 

My hope as an Ovarian cancer survivor is that through this campaign more women will be aware of Ovarian Cancer and recognise the symptoms, get earlier diagnosis and hence improve our dreadful mortality rates. 

Sincere thank you to the World Ovarian Cancer Coalition for the award that recognises INGO and its work which clearly demonstrates what working together can achieve all in the best interest of better patient outcomes.” 

The complete list of winners, by category, are: 

Inspiring Collaborations Award – this Award is in recognition of an organization collaborating and networking with other organizations to enhance each other’s work and change the future of ovarian cancer. Recipients for this year are:

  • Eva Strömsholm, Gynecological Cancerpatients of Finland
  • Irish Network for Gynaecological Oncology, Ireland
  • Natalie Ritrovato, United Kingdom

Charter Champion Award –

  • Hope for Heather, United States 
  • National Ovarian Cancer Coalition, United States 
  • Ovarian Cancer Research Alliance, United States 

The Every Woman Study™️ Award –

  • Ovarian Cancer Malaysia

World Ovarian Cancer Day Award –

  • Dr. Deborah Harkness, United States

Outstanding Achievement Award –

  • Sandra Balboni, LOTO ODV, Italy

The awards ceremony will be streamed on December 1st at 3:25pm UTC during the World Ovarian Cancer Coalition Partner Meeting. More information on the meeting and awards ceremony. can be found here: https://worldovariancancercoalition.org/our-work/22-partner-meeting/

About the World Ovarian Cancer Coalition 

The World Ovarian Cancer Coalition is a not-for-profit organization, formally established in 2016, working across the globe towards a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. More information can be found on www.worldovariancancercoalition.org 

About The Irish Network for Gynaecological Oncology (INGO) Members

ARC Cancer Support Centres, Dublin; Answers for Cancer Podcast team; Breakthrough Cancer Research; Cancer Care West; Cancer Trials Ireland; CERVIVA; Circle of Friends Cancer Support Centre; Coombe Women & Infants University Hospital, Dublin; Cork ARC Cancer Support; Cork Cancer Care Centre; East Galway and Midlands Cancer Support Centre; Emer Casey Foundation; Irish Cancer Society; Irish Society of Gynaecological Oncology; Karen Fenton Ovarian Cancer Fund; Lynch Syndrome Ireland; Marie Keating Foundation; Mater Hospital Dublin; National Cancer Control Programme; National Immunisation Office; National Women’s Council of Ireland; OvaCare; Pink Ladies Cancer Charity; Purple House Cancer Support; Queens, Belfast; Sláinte an Chláir; Sligo Cancer Support; SOCK; Swell Fermanagh Cancer Survivorship Group;  St. James’s Hospital Foundation (GynaeCancerCare); Trinity College Dublin; Trinity St. James’s Cancer Institute; University College Dublin School of Medicine; and 221+ CervicalCheck Patient Support Group.

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

www.thisisGO.ie 

For more information contact:

Phaedra Charlton Director of Communications and Marketing

World Ovarian Cancer Coalition phaedra@worldovariancancercoalition.org

Catherine Walsh, Director, The Reputations Agency 087 268 9532

Ovarian Cancer

Know What Your Doctors Know patient webinar for people with ovarian cancer, their caregivers, and their families.

Experts provide information and answer questions about ovarian cancer to help patients and caregivers compare, discuss, and select treatment options with their doctor. 

NCCN Patient Webinar(2021) : https://youtu.be/ggsyEEW98PA 

OvaCare Patient Day

The programme for Ovacare Patient day this coming Sat Nov 19th in #thedeanhotelGalway.

They can’t wait to finally be back in the room with you all!

There’s still time to register on http://Ovacare.ie

Ovarian Cancer -Know the Signs & Symptoms

There is currently no reliable screening test for ovarian cancer. Unfortunately, most women with ovarian cancer are diagnosed with advanced-stage disease (Stage 3 or 4).

This is because the symptoms of ovarian cancer (particularly in the early stages) often are not acute or intense, and present vaguely. In most cases, ovarian cancer is not detected during routine pelvic exams, unless the doctor notes that the ovary is enlarged.

The sooner ovarian cancer is found and treated, the better a woman’s chance for recovery. It is important to know that early-stage symptoms are not silent – so women should be extra alert and watch out for early symptoms.

http://www.ovacare.ie

September is Gynaecological Cancer Awareness Month

Check out this valuable source of information: https://thisisgo.ie

ThisisGO.ie

Another brilliant resource now available for women living with/beyond and with a predisposition to cancer.

Phase 3 live now

-400 women are diagnosed with Uterine cancer every year. 70-80% diagnosed are living with obesity.

Log on to https://thisisgo.ie/?fbclid=IwAR13F4M_K4vkAjBjD__7C7zDvxQdpgWuSW-IQnmA3JX9LePG9QDh9qay_X8 for accurate info.

Lynch Syndrome for the Gynaecologist

Cumulative Lifetime risks of cancer in Lynch Syndrome

Endometrial: Up to 57%

Ovarian: Up to 17%