My name is Geoff Tomlin, 76 years old and I have lived in Tasmania, Australia all of my life. I have been married for 53 years and have three children and three grandchildren.
I have always been healthy and active with no treatments or hospitalisations for any health conditions. My career and hobbies involve mechanical engineering, music and cycling.
How were you diagnosed and how long did it take? What form of NETs were you diagnosed with? And had the NET spread to other parts of your body?
My diagnosis is grade 2 pancreatic neuroendocrine tumours (NETs) with liver metastases.
In retrospect I think I was aware of many of the early symptoms of NETs at least five years before diagnosis but I didn’t feel the need for relief and would have found it difficult to describe them to a doctor anyway. The discomforts developed over several years and I consciously considered that if they were caused by something other than normal ageing it would become more apparent in time.
I was a regular cyclist and eventually I felt so limited by breathlessness and chest discomfort that I went to a GP who referred me to a cardiologist for scans and a stress test which was considered relatively normal for age so no further investigations. About seven months later I went back to the GP having suddenly lost weight, about five kilograms in a week. A scan or x-ray revealed pancreatic and liver tumours initially assumed to be the common cancer being inoperable and terminal. About two weeks later biopsy results confirmed NETs which were understood to be slower growing but not curable.
What treatment have you had and how did it affect you then and now?
Within two weeks of my NETs diagnosis, I was offered PRRT for which I travelled to Melbourne. Each treatment involved three days away and I was quite unwell initially but gradually improved over the eight months of PRRT. I now have lanreotide injections every four weeks which I tolerate quite well and two years after diagnosis and about fifteen injections I still feel slight improvements in energy and general feeling of wellness.
What impact has the diagnosis had on your personal life?
Emotionally, I accepted the diagnosis and while there was a sense of reprieve from the initial prognosis, I still felt the need to put things in order in the short term because a prognosis was not available.
I am very open about my condition and thoughts with family and close friends so that it is almost never referred to because they understand that I will mention anything significant that changes.
What lessons have you learnt along the way (if any)?
Everyone should have annual medical check-ups including blood and urine tests and learn to monitor their results for any change trends. However, one would have to be very persistent to have minor changes in pathology results investigated to a conclusion, but that is the challenge!
Who’s been your hero? Perhaps it was you!
Professor Michael Michaels and the other doctors and nurses at PeterMac who have specialised in this disease and now develop and deliver treatments that make a difference. Also, the people behind NECA and the support groups without which I would have very little information about my NETs.
Did you get any help from a patient organization during your journey?
Patient Travel in Hobart were very helpful organising flights and accommodation to Melbourne especially during the early Covid lockdowns. NeuroEndocrine Cancer Australia (NECA) and the support groups have been the only real source of information and hope.
How are you now?
Now, just two years after diagnosis I generally feel almost normal but without the zip I had just a few years ago and quite limited with any sustained effort.