Caroline’s Story

Caroline Fagan Heyenga

Caroline Fagan Heyenga

Caroline was 9 years old when she was first diagnosed with Follicular Thyroid Carcinoma (FTC) back in 1991. At the time, the medical profession in Ireland had never seen her particular cancer before, describing it as “unique”. Despite this, Caroline was successfully treated under the medical team of Prof. Guiney & Prof. O’Higgins at Temple Street and St. Vincent’s Hospital in Dublin. Her thyroid was removed and she was put on Thyroxin replacement therapy. Biopsies of Caroline’s tumour were sent to many hospitals around the world for review, including Great Ormond Street in London and Memorial Sloan Kettering in New York.

For many years Caroline’s illness was stable, and did not show up on regular blood screenings or scans.

In June 1999, now under Dr. Morriarty & Prof. McKenna of St Vincent’s and St. Luke’s hospitals in Dublin, Caroline noticed some shortness of breath. Unfortunately this proved to be due to the cancer progression, and tumors were found in her lungs. Caroline was admitted to St. Luke’s for Radio-iodine therapy in isolation units for one-week periods. This treatment occurred over seven different admissions until 2008, when the tumours were successfully taken under control, and Caroline’s condition became stable once again.

Caroline continued treatment, and in 2004-2005 she travelled the world with her boyfriend John. In May 2009 Caroline and John were married, and were later blessed with the arrival of two beautiful children. Katie was born in October 2010, followed by her sister Claire in March 2012.

Caroline’s doctor (Dr. Morriarty) retired, but remained in close contact with Caroline’s case. Now under the care of Dr. McVey, Caroline had regular check-ups, tests and scans to ensure her condition remained under control. Caroline also had communication and consultations with Dr. Nutting in The Royal Marsden Hospital, London; and with Dr. Brennan of Mayo Clinic, Minnesota.

John, Katie & Claire

John, Katie & Claire

In late 2012 following the birth of her second daughter Claire, Caroline began to suffer from extreme exhaustion. She lost a lot of weight and developed a terrible pain in her ribs. What was first thought to be kidney stones turned out to be a new tumour, this time on one of her ribs. She was admitted into St. Vincent’s Private Hospital straight away.

Dr. McVey started radiotherapy immediately to help relieve the pain, which was successful, and treatment continued throughout the 2012 Christmas period. Caroline was then put under the care of Oncologist Dr. McDermott.

In mid-January 2013 bone biopsies were obtained to establish if the cancer was still within the thyroid type, which was confirmed.

After a detailed review, Dr. McDermott prescribed an inhibitor drug called Sunitinib (Sutent) which was used over a three month period. It had mixed results and tumours continued to grow in new locations. Following Sunitinib, Caroline was introduced to Doxorubicin and underwent a total of 10 cycles. Unfortunately, again there were mixed results.

Caroline’s cancer type was so rare, and with Ireland having a very small population, Caroline’s family found it very difficult to find similar cases close to home. They researched and explored further avenues in the UK and Europe, and eventually found that the only place where further treatment possibilities lay was the United States. Caroline’s brother then started the process of reviewing and visiting hospitals in the USA. He researched all the main contributors, honing in on those who were publishing papers and leading clinical trials in Thyroid Cancer. Eventually this research narrowed potential American cancer hospitals down to just two – Memorial Sloan Kettering Cancer Centre in New York (under Dr. Sherman) & Johns Hopkins Medicine in Baltimore (under Dr. Ball).

Caroline then began traveling to the USA to attend consultations with Dr. Ball & Dr. Sherman. Following a review of Caroline’s scans, bloods etc; a new drug called Pazopanib was recommended and Caroline began taking a high dose of this drug. It had a positive effect, with many affected areas showing signs of improvement. Caroline’s medical teams in both Ireland and the USA were furthermore very impressed with how she also defied many of the drug’s side effects. There were however some complications and hospital admissions during this cycle, and while back in Dublin Caroline continued to receive care from the superb St. Vincent’s Private hospital.

Around this time, samples of Caroline’s cancer were sent for detailed genetic testing, both at home in Ireland and to Foundation Medicine in Boston. Results took some time, but they opened up a matrix of codes on how Caroline’s cancer was programmed. This gene mutation testing proved invaluable (and we believe is the future direction of cancer treatment). Armed with this information on Caroline’s cancer gene coding, it became clear what medical trials could work and what ones would not. This allowed Caroline and her family to source the various options available around the world, and also helped them to understand many other aspects of Caroline’s cancer.

By December 2013, the drug Pazopanib was halting the growth of all Caroline’s tumours well – with the exception of those in the kidney. These became problematic. A prompt review took place with both Caroline’s Irish and US doctors. After much discussion, the decision was made to start Caroline immediately on intensive radiation treatment on the kidney, treatment which continued in St. Vincent’s Hospital right up until Christmas Eve 2013.

During this time there was continual correspondence and consultations between Caroline’s American doctors (Dr. Ball working in collaboration with Dr. Sherman). A new clinical trial was suggested as the next step in treatment.

At this time (early 2014), the Caring For Caroline Medical Trust was established in order to raise funds to enable Caroline to travel to the USA and take part in the appropriate clinical trials and treatment, as these would only be available to her there.