Author: Lynch Syndrome Ireland

A Beginner’s guide to Lynch Syndrome

This information booklet provides answers to some of the many questions you may have, following the news that you carry a gene mutation which causes Lynch syndrome.

One of the challenges that people with Lynch syndrome face is coping with the uncertainty of what the future holds, both for you and your family.

Unlike other health-related issues, there is an extra set of challenges for people with Lynch syndrome – the risks for your relatives.

This guide will be useful in providing you with some of the information you need and also help you to think about questions you may wish to discuss with your family and the genetics department.

https://patientinfolibrary.royalmarsden.nhs.uk/lynchsyndrome

HPV vaccine catch-up programme

This month eligible people who are aged 16 and older can register to receive a HPV vaccine. From early 2023, the programme will be open to all eligible people.

Initial vaccination clinics will being on Monday 12th December with additional clinics being added throughout 2023.

Students in their first year of secondary school are offered the HPV vaccine as part of the school vaccination programme.

https://www.hse.ie/eng/health/immunisation/pubinfo/schoolprog/hpv/

HPV infection can cause cancer of the:

  • cervix
  • vulva (the area surrounding the opening of the vagina)
  • vagina
  • anus
  • oropharynx (the part of the throat at the back of the mouth)
  • penis

HPV infection can also cause genital warts in both girls and boys. The World Health Organization (WHO) states that the HPV vaccine is extremely safe. If you have questions about the HPV vaccine, talk to a trusted health professional like your GP

Bringing you mindfulness

Self-compassion is good for you. That’s a fact. Across a whole range of areas,

including anxiety, depression, relationships, motivation and making healthy choices, self-compassion has been found to have positive and really healtheffects.  (from my book Kindfulness).

Try: Next time you are criticising yourself, take the point of view of a good friend rather than a harsh critic.

The quite short guide to mindfulness:

Home

Kirstie Alley’s Cause Of Death Explained

Kirstie Alley, best known for her Emmy award-winning role as Rebecca Howe on “Cheers,” died Monday night of colon cancer (via People). She was 71.

Her children, True and Lillie Parker, said in a statement on Twitter that her cancer diagnosis was “recently discovered” and that her closest family members were with her. She was receiving treatment at the Moffitt Cancer Center.

Read More: https://www.healthdigest.com/1128029/kirstie-alleys-cause-of-death-explained/?utm_campaign=clip

According to the American Cancer Society, colon cancer might not have symptoms at first, and one could be symptom-free before finding out the cancer has spread.

For those with a genetic predisposition, like Lynch Syndrome, it can spread faster and occur at younger ages (per Fight Colorectal Cancer). Doctors recommend regular colon cancer screenings at age of 45 for anyone with an average risk and even younger for those with a genetic risk factor.

Read More: https://www.healthdigest.com/1128029/kirstie-alleys-cause-of-death-explained/?utm_campaign=clip

Urine test can detect cancers in Lynch Syndrome patients

“People with Lynch Syndrome can benefit from screening programmes that enable cancers to be found at an early stage when they can be cured “

Patients with LS are at high risk of bowel and endometrial cancers. The risk of urothelial cancer is less well recognised, with a lifetime risk of up to 28.5%, depending on which gene is involved.

This means that those LS patients who have an underlying defect in the MSH2 gene are more than 10 times as likely to get a potentially curable cancer in their urinary tract than the general population.

Failure to screen for these cancers means that even after being diagnosed with the condition, one in 20 LS patients will die of urothelial cancer, often at a young age.

https://www.ncl.ac.uk/press/articles/latest/2021/11/lynchsyndrome/

Johanne’s story

Genetic testing “it can only help you if you are armed with more information…”

https://www.dropbox.com/s/3b5vrkyqzwbzcxl/JOANNE%20SLATTERY%20FINAL.mp4?dl=0

Cancer Trials Ireland

Open Trials

Questions for your doctor

f you would like to know more about whether there is a cancer trial suitable for you,  the first thing you do is to talk to your doctor and/or the cancer trials research team in your hospital.

Here are some questions you may have.

Finding a study / trial

  • Are there any studies or trials I could enter with my type and stage of cancer?

Details about a trial

  • Can you tell me why this study/trial is being done?
  • What is being tested and why?
  • What are the possible advantages and risks of taking part?
  • Is there a chance I will not get the treatment being tested?
  • Will I be allocated a treatment by computer, or do you and I have any choice?
  • How long will the study last?
  • What will I have to do if I take part?
  • Will I have to have extra tests or scans?
  • Will I need to go to hospital?
  • Will I need to take time off work?
  • Will being involved affect my day-to-day life?
  • Who will oversee my cancer care while I am participating – will I have a different doctor?
  • How will I find out about the results if I take part?
  • Can I take part in more than one trial?
  • If I join this trial could I miss out on trials in the future?
  • How long do I have to decide?

How they are run

  • Can I tape the meeting or take notes?
  • Is the study / trial approved?
  • Can I bring a relative or friend to the informed consent meeting?
  • Who will be allowed to see my medical records?
  • What information about me will be on the computer?
  • Who will be told I am in a trial?
  • Can I claim expenses, such as travelling costs?

Safety

  • Who can I contact if I have a problem?
  • What are the likely side effects?
  • Can I leave the trial if I want to?
  • What will happen if I get side effects?
  • Who can I contact in an emergency?
  • Who makes sure the trial is safe and properly run?
  • Am I covered by insurance if things go wrong?
  • Is there anything I am not allowed to do while I am in the trial?
  • Are there any drugs or medicines I shouldn’t take while I am in the trial?

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