Caroline’s Story-old

Caroline Fagan Heyenga

Caroline Fagan Heyenga

Caroline is now 32 and battling Metastatic Follicular Thyroid Carcinoma.

When Caroline was 9 years old (1991) she was first diagnosed with Follicular Thyroid Carcinoma (FTC). At this time, it was a type of cancer that the medical profession in Ireland had never seen before and was being described 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 tumor 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 had noticed a shortness in her breathing. Unfortunately this was a result of the cancer progressing with tumors being found in her lungs. She was then admitted to St. Luke’s for Radio-iodine therapy in isolation units for 1 week periods. This treatment occurred over seven different admissions until 2008 when the tumors were successfully kept under control making Caroline’s condition stable once again.

Caroline travelled the world during treatment in 2004 and 2005 with her now husband John. In May 2009 Caroline married and has since been blessed with the arrival of two beautiful children. Katie in October 2010 followed by her sister Claire in March 2012.

In recent years Dr. Morriarty retired (but still remains in close contact with Caroline’s case). Now under Dr. McVey Caroline had regular check-ups, tests and scans to ensure her condition was 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 suffered with extreme exhaustion losing 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 tumor, this time on one of Caroline’s ribs. Caroline was admitted into St. Vincent’s Private Hospital straight away.

Dr. McVey started radiotherapy immediately to help relieve the pain, this 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 tumors continued to grow in new locations. Following Sunitinib, Caroline was introduced to Doxorubicin and underwent a total of 10 cycles. Unfortunately, again we had mixed results.

With Caroline’s cancer type being so rare and Ireland having a very small population, this did not help when researching similar cases in Ireland. After many avenues being explored in the UK and in Europe, we found the only location showing real signs of development was the United States.

As options were becoming limited in Ireland, Caroline’s brother started the process of reviewing and visiting hospitals in the United States. He researched the main players, who was writing papers and leading clinical trials in Thyroid Cancer. Working through many of the top American cancer hospitals it came down to two. The Memorial Sloan Kettering Cancer Centre in New York (Dr. Sherman) & Johns Hopkins Medicine in Baltimore (Dr. Ball).

The travel with Caroline started, attending consultations in the US with Dr. Ball & Dr. Sherman. After a review of Caroline’s current scans, bloods etc. a new drug called Pazopanib was recommended. Caroline began a high dosage of this drug, which we could prescribe in Ireland. It reacted positively in many areas showing signs of improvement. Caroline’s medical team in both Ireland and the US were very impressed with how she defied many side affects of the drug. There was however some complications and hospital admissions during this cycle under the superb care of St. Vincent’s Private hospital.

At this time, Caroline’s cancer was put forward for very unique detailed genetic testing here in Ireland but also with Foundation Medicine in Boston. This took some time, but the results from the testing opened up a matrix of codes to how Caroline’s cancer is programmed. This gene mutation testing is invaluable and is the future of treating cancer. Knowing Caroline’s cancer gene coding, could immediately help us decide what trials would work and what ones would not. This would then allow us to source various options available around the world and also help with understanding many other aspects to Caroline’s cancer.

By December 2013, Pazopanib was holding all Caroline’s tumors well apart from the kidney, which became more problematic. Prompt review of this issue happened with Caroline’s Irish and US doctors. After much discussion, the decision was made to start Caroline immediately with more radiation to the kidney. Caroline had intensive radiation in St Vincent’s Hospital right up to Christmas Eve.

In regular correspondence and consultations with Caroline’s US doctors (Dr. Ball working in collaboration with Dr. Sherman), a new clinical trial was put forward.

There is also discussions around past trials with promising results. These trials are currently awaiting FDA approval, which we hope are signed off at ASCO 2014. One particular drug has finished its trial in a similar cancer case overseen by Dr. Ball showing great results.

There is a high chance that Caroline and her family will need to move abroad in order to avail of these trials. Caroline’s continued progress depends upon an intensive treatment plan and regular visits to the United States.