For Karen Humphries, her time is divided between her home and the Royal North Shore Hospital.
After having her gallbladder removed in October of 2021, Karen was diagnosed with Cholangiocarcinoma. Rare and aggressive, the disease involves cancer in the bile ducts, stationed in the upper GI tract.
What ensued for Karen was immediate radical surgery and chemotherapy to her liver, appendix, and lymph nodes. The cancer spread, and Karen underwent six months of more chemotherapy. For Cholangiocarcinoma, the five-year survival rate is abysmal. If the cancer is localised, the survival range is from 18% to 23%, for metastasized cancer outside of the bile ducts, survival falls between 2% and 3%.
With great effort, she went into remission, but not for long.
January 2024 saw a return of her disease in the form of stage 4 metastatic incurable cholangiocarcinoma.
‘I had seven additional tumours in my liver, bile duct, local and regional lymph nodes,’ explains Karen. ‘I will remain on treatments for the rest of my life and require biliary stenting.’
Her survival, in Karen’s eyes, is completely due to the expert and unwavering care of her team at RNSH and the Northern Sydney Local Health District, including Professor Nick Pavlakis, medical oncologist; Professor Jas Samra, pancreatic cancer and pancreatic neuroendocrine tumour surgeon; and Dr Neomal (Nemes) Sandayake, gastrointestinal specialist.
No stranger to the need for chronic health support, Karen has been a rare disease advocate having lived with Ehlers Danlos Syndrome the majority of her life, and a health mentor. She is tuned into the need for inclusivity, recognition, and championing cancer wellbeing.
‘I have a dream that all cancer survivors in our community will have the support emotionally and mentally to be able to live with more joy,’ says Karen. ‘Ten sessions on the current mental health plan aren’t enough to help face the trauma when you go through cancer.’
From her chemotherapy pole, Karen started the Socks4Cancer initiative in 2021. With the help of her community, she has raised $22,500 for the NORTH Foundation, Hornsby Relay for Life, and other Cholangiocarcinoma related organisations.
Now, Karen aims to raise $100,000 for the Cholangiocarcinoma Department at RNSH through the NORTH Foundation’s Costumes for Cancer. The funds will go towards support, medical equipment, and Professor Nick Pavlakis’ circulating tumour DNA research.
‘It will be a game changer for people living with Cholangiocarcinoma like myself,’ says Karen. ‘It will enable a patient to have access to prevent other relapses so treatments can start sooner.’
On the cancer survivorship steering committee at RNSH, she has contributed to the upcoming launch of CanSupport, for better mental health and wellbeing in a cancer survivor, even after remission.
Karen thanks her community, her church Mount Colah Uniting Church, her physiotherapist Darren Pivetta, and the help of The Post’s Publisher Tina Brown for supporting her advocacy campaigns and highlighting her work in Australian parliament.
‘My community are my reasons to get up every day, they are the pivotal key for my day-to-day survival,’ says Karen.
World Cholangiocarcinoma Day falls on the 20th of February.
To donate to Karen Humphries Costumes for Cancer initiative, visit costumes-for-cancer.raiselysite.com/karen-humphries
To find out more about Socks4Cancer, visit www.facebook.com/Socks4Cancer/
All images Courtesy Simon Cardwell
