My name is Brian Cummins. I am 59 years of age, married with two children from Dublin, Ireland. In March 2018, I noticed I had a very bad cough (similar to a smoker’s cough) and my wife noticed I was losing my appetite. Furthermore, I noticed when I was lying on my back at night, my stomach was becoming very hard. It was then that I decided to go to my GP in April 2018, mainly because of the hardness of my stomach at night. He took the decision to send me for an ultrasound scan. My GP then informed me they had discovered a large mass in my pelvic soft tissues, and that it had potentially metastasised. I was then referred to a specialist for observation, which then resulted in me undergoing further investigation.

I underwent tests which included a colonoscopy, endoscopy, CT scan, chest x-rays and finally a biopsy of my liver. After all the tests, my consultant told me he felt I had a tumour originating from my appendix that had metastasised to my liver. He then informed me a week later I would be prescribed a treatment in the form of tablet for my condition and I would not be undergoing your standard chemotherapy. The next month saw my condition deteriorate quickly with new symptoms materialising.

After meeting my oncologist, and he informed me I had a 23 centimetre tumour in my small bowel and that the cancer had metastasised to my liver, leaving 6 small tumours. He told me this was called GIST (Gastrointestinal Stromal Tumour). Moreover, he stated to me I would be administered a tablet named Imatinib (Gleevec 400mg) and this would be sufficient to treat the primary tumour in my small bowel and the additional tumours in my liver. I was informed that GIST is a very rare form of cancer, and that there are only 30 new cases in Ireland each year.

The next few months saw me return to hospital once a month to check my bloods and every three months I would get CT scans which showed my treatment was continuing to work. My oncologist had told me that the tumours in my liver were now cystic. Fast-forward to July 2019, where my multidisciplinary team decided that my primary tumour was to be removed as it had shrunk from 23 centimetres to 2 centimetres. It was now appropriate to surgically remove the tumour. I successfully underwent surgery in August and I spent seven days in hospital. I then recovered at home for a month and then I began to get back to enjoying my life again, playing golf and returning to my role as chairman of my local football club.

In September 2019, I returned to the hospital to see my oncologist, where he told me my CT scan showed my small bowel was clear and that the tumours in my liver were still cystic. I continue to take Imatinib every day just before I go to bed. I feel this is the best time for me as Imatinib can cause tiredness, therefore I can sleep through this side effect. I return to the hospital once a month for my bloods to be checked and every 3 months I have a CT scan. My oncologist said he will monitor me every three months and that I will be taking Imatinib for the foreseeable future. In October 2019 my son attended a GIST UK patient meeting on my behalf to get a greater insight into this rare type of cancer. This was very beneficial for me and these patient meetings are a great resource to anyone suffering from GIST. My son also gained knowledge from various research papers, but a great resource was the GIST Support International page on Facebook where patients discuss their experiences with GIST. My son has only spoken to five patients from Ireland on this page which really highlights how rare this form of cancer is.

The diagnosis of GIST is made by a histopathologist – in my case by examining a metastatic tumour nodule removed by liver biopsy. The pathologist uses molecular pathology techniques (and often molecular genetic techniques) to establish the diagnosis of a tumour which in the great majority of cases, responds well to imatinib. Imatinib is a form of “targeted therapy” because it specifically targets and blocks an abnormally overactive receptor tyrosine kinase on the GIST cell surface. The GIST then stops growing, and the non-viable tumour becomes cystic as in my case. The molecular abnormalities of GIST were revealed because these rare tumours were biobanked and examined by researchers collaborating together.

I must make everyone aware that throughout the last two years it would have been extremely difficult to get through this period without the consultants, surgeons, doctors and nurses who looked after me. Also, I cannot forget what a pivotal role my family, friends and the local community have done for me. I have now put on the four stone in weight that I lost at the start of my diagnosis and I am enjoying life.

The world is a better place for having this miracle drug Imatinib made available to people suffering from this disease. I am a perfect example to everyone that this is truly a magnificent cancer drug. I am now at the stage where I can look forward to my daughter’s wedding in September.