Welcoming a New Global Liaison – Donncha Lynch
Donncha Lynch, Australia
In 2012, Donncha and his wife, Oihana, relocated from Ireland to Australia due to an economic recession. Despite the promising job opportunities ‘down under,’ facing GIST away from family and old friends presented a significant and unexpected challenge.
Donncha initially experienced common symptoms like abdominal pains and constipation, leading to inconclusive test results. Despite a misdiagnosis of a parasite and rounds of antibiotics, he remained distracted by life’s busyness until a severe attack left him unconscious. Rushed to the emergency room, suspicions of a heart attack were replaced by the discovery of a large tumor and several smaller ones in his gastrointestinal tract, marking five challenging days for Donncha.
“I was first told it was potentially another type of cancer with a very poor prognosis. So those first five days (in hospital) were something you never want to go through,” said Donncha. After concluding it was GIST and not another cancer, he began imatinib resulting in tumor reduction evident at his 12-week scan.
Donncha didn’t know much about GIST or The Life Raft Group yet, but he was determined to learn all he could. He was classified as wildtype and needed to know more.
“I set out to empower myself. Through Google, I found The Life Raft Group and to be honest I probably read every article on the website. I watched a majority of the webinars. I learned about everything – molecular testing; all the terminologies. I started to make connections through the Facebook groups and through the Australian/New Zealand GISTers, and I met some Life Raft Group people through that sharing. These were some really good conversations,” said Donncha.
The surgeon on his multidisciplinary medical team was not hopeful about Donncha’s situation.
“I decided to seek a second opinion. The surgeon who was part of the multi-disciplinary team and who cared for me since day one had said a few times, “It’s a big operation, Donny. It’s going to be 9 or 10 hours and you might have physical consequences that could be very challenging for a very long time.”’ I decided to seek a second opinion. so the search for someone else began.“ Donncha shared.
Donncha, after consulting with a highly experienced GIST surgeon, opted for surgery despite complications that extended the recovery. Fortunately, the outcome included clear margins, a more optimistic prognosis, and post-surgery scans indicating no evidence of disease. Test results classified him as exon 11, and due to the tumor’s size and location, he’s considered high-risk, requiring ongoing imatinib treatment. Overall, a significantly improved prognosis compared to those first five days.
As liaison, Donncha is eager to share what he’s learned about how to live with GIST and about being a self-advocate. His goals in this role are to empower people to go out and find answers, connect with others on this journey, and to encourage others to get professional mental health services even if they don’t think they need it.
“In this role that I’m doing for The Life Raft Group, I am engaging with people. I’m sharing my story. There’s a bit of courage involved but that’s where the most rewards come. When support was offered to me for mental health, and though I’m a very optimistic person, I went to see a psychiatrist. At first I thought it would just be ticking a box, but I met a really good psychiatrist and got a tremendous lot from the sessions. She really knew where I was coming from. She involved my family. She taught me how to talk to my nine-year old daughter, Haizea. Oihana came along for some sessions and she learned a lot about how to deal with her own suffering.”
Support groups are important:
“I’m in this men’s mental health management group here in Sydney and we meet for a swim and a coffee once a week. They’re a great bunch of guys, all at different stages of life; some are going through relationship issues, some addiction issues, some health battles. I can’t explain the rush of endorphins or whatever that is, to be able to share your story in a circle of trust.”
His best advice for newly diagnosed patients is educate yourself
“I know not everyone is tech savvy or likes to read, but join the LRG, find someone on the same journey to connect with. If I hadn’t done these things, I might not have gotten the mutational testing, or a second opinion. For all I know, I might not have been here talking to you if I didn’t do my research and find another surgeon, who did an amazing job that didn’t have catastrophic effects on my physical activities.”
A very big part of having GIST is realizing how much your perspective on life changes:
“I have down moments event though I probably come across as a very strong guy, but you will have some very sad moments, and through this I’ve come closer to God, have more intimate relationships with my family, I’m leaned into mindfulness and meditation and I’m very invested in being self-aware and being a better man. I’ve no idea how long I have and I want to be the best version of myself from now til whenever. I want to give it 100% as often as I can and be ok with it when I can’t. This experience has changed the way I look at life so drastically. I would have never have thought of these things before.”
Patients stories illustrate the heart of the a patient’s journey living with GIST. Stories like Donncha’s not only encourage and inform our community, but help others know that they are not alone. If you would like to read more member stories, please visit https://bit.ly/LRGMemberStories. We encourage you also to share your own story and consider volunteering with the LRG in one of the many patient & caregiver support roles, such as a liaison or support group leader, or a GIST Mentor.
To share your story, contact:
Carol Tordella: ctordella@liferaftgroup.org
To volunteer, contact:
Diana Nieves: dnieves@liferaftgroup.org
