In 2000, Catherine Cheatle was given 18 months to live after being diagnosed with a rare form of cancer.
Thirteen years later, she has just celebrated her 70th birthday and is feeling better than ever.
Catherine, who lives in Tramore, is a leading member of a new patient’s organisation which is campaigning to improve how Ireland’s health services deal with carcinoid cancer which involves tumours in the neuroendocrine or hormone producing system.
Between 2,000 and 3,000 Irish people have carcinoid cancer, making up between just two and three per cent of Ireland’s cancer population.
Catherine has shared her story in order to raise awareness of the work of the NET Patient Network who will hold their second annual meeting this weekend.
“I went to my GP in 2000 with recurring abdominal pain. My GP decided to send me for an ultrasound and the ultrasound showed something on my liver,” she explained.
Catherine underwent CT scans and blood tests and was incorrectly diagnosed with adenocarcinoma cancer.
“They did a biopsy and saw there were multiple tumours on my liver. The consultant put me on palliative chemotherapy because he said it was inoperable as they didn’t know where the primary cancer was,” she said.
She was given 18 months to live.
Despite being given such frightening news, Catherine said she managed to accept the hand which she had been dealt.
“I found great therapy in walking Tramore beach with my two lovely dogs,” she said.
“I continued with the chemotherapy and I was still around when Tommie Gorman’s programme was broadcast on January 8th 2002. That date will always stick in my memory as it’s such an important date in my life.”
In 2002, RTE journalist Tommie Gorman made a television documentary called ‘Cancer, Europe And Me’ documenting his own treatment for carcinoid cancer while raising awareness of the E112 system which enables people to avail of treatment elsewhere in the EU if they cannot access the treatment in their own country.
The programme followed Tommie, who has been living with carcinoid cancer since 1994, as he received treatment in Sweden which is a world leader in dealing with the rare type of cancer.
After seeing his programme, Catherine queried her own diagnosis and discovered that a mistake had been made.
“I was very excited after seeing the programme, and the next day I called my oncologist and asked if there was anything that could be done for me,” she explained.
“He said he didn’t know if the treatment in Sweden would suit me as my tumours were different to Tommie Gormans. I then had a biopsy of my liver and when they looked at the results they said I actually had the same cancer as Tommie Gorman – carcinoid tumours or neuroendochrine tumours (NETs).”
Carcinoid cancer is the cancer which claimed the life of co-founder, chairman and CEO of Apple Steve Jobs in 2011.
Having received the news of her misdiagnosis, Catherine immediately set about making contact with Tommie Gorman.
“He was incredibly helpful in getting me to Sweden where they are experts at this treatment. Only for Tommie Gorman, I don’t think I’d be around today,” she said.
“I went over in May 2002 and had my first consultation. I was put on totally different chemotherapy. Everything was reviewed three or four times a year in Sweden so I had to travel over each time. It was all a bit bewildering initially but I got used to it. My husband came with me the first couple of times but then I went on my own. The care I received in Sweden was wonderful. The medical teams had consultations every morning to discuss each patient. It was amazing. There were people coming there from all over the world.”
From 2005 to 2008, Catherine was put on different treatment and reduced her journeys to Sweden to twice a year.
“I was still leading a very normal life. I couldn’t believe I was alive,” she said.
She was then introduced me to a nuclear treatment called lutetium.
“I responded extraordinarily well to that. I had to be isolated for 24 hours when I had the lutetium. I had three sessions over a nine month period, with the final treatment in 2009. Some of the tumours actually almost disappeared. The cancer has been contained since then so it hasn’t got any worse. I’m leading a very normal life and I had no treatment since then.”
Last year Catherine and fellow carcinoid patients set up their own patient’s advocacy group to provide better support for those affected by the disease and to campaign for better treatment paths in Ireland.
NET Patient Network held their first meeting last November.
“We had a great event a year ago in Dublin during which patients and their families and friends got to meet with the Irish doctors who are working to combat the disease,” said Catherine.
“There are people out there with this type of cancer who might not be aware of what help is available. We hope that medics in Ireland will also become more familiar with this. Hopefully people won’t have to go abroad. It’s traumatic for people who are ill.”
She added: “If you are lucky, through drugs treatment, surgery and other procedures, it is possible to keep the symptoms under control and lead an almost normal life.”
Dr. Dermot O’Toole, who was appointed to run a weekly clinic at St. Vincent’s hospital for carcinoid patients in June 2011, will be among the speakers.
All are welcome to attend this event which is free of charge.