Carmel Pickup tells the story, in her own words, of the journey that led to her dad’s diagnosis for pancreatic cancer from which he sadly died in February 2009.
Pancreatic cancer has had a devastating effect on my family. My father, Noel Pearce, passed away from this terrible disease at the age of 69 – 18 years to the day after the death of his mother (my grandmother) Philomena Pearce, of the very same illness. My father and grandmother are not the only members of my family taken by this disease – my grandmother’s sister and three other relatives in the one branch of my family tree have also died from this aggressive form of cancer.
Approximately two years before being diagnosed with pancreatic cancer, my father had his annual health check-up at his local doctor. A routine blood test showed an elevated blood-sugar level and a diagnosis of pre-diabetes was made. My father was told to cut down on his alcohol intake (as he was drinking heavily at that stage) and have no more than two standard drinks per day, eat healthily and get regular exercise. It should be noted that he was not overweight, in fact he was very fit for his age, and even in his mid-sixties was still the proud owner of a ‘six-pack’ – and not the alcoholic kind!
According to my mother, my father followed doctor’s instructions with the exception of cutting down on his alcohol intake. I remember he did eat very healthily and exercised by walking his dog early each morning.
We don’t know for how long my father suffered early symptoms of pancreatic cancer (as like his mother) he kept his symptoms to himself for as long as possible. The first mum was aware that he had something wrong was finding packets of quick-eze in the glove-box of his car. When she questioned him on them, he replied that he had been getting indigestion quite regularly of late.
My father was diagnosed with secondary cancer of the liver in April 2008 with an unknown primary. It took some time and a lot of tests before a diagnosis of pancreatic cancer was finally arrived at via the CA19.9 blood test and MRI testing. At that time so little was known about pancreatic cancer that his oncologist remarked “trying to find pancreatic cancer is like trying to find a tree in a forest” it was that hard to detect.
Dad’s treatment included chemotherapy (in the initial stages) as his doctor felt he was young and fit enough for it to be worth a try, even though the long term result was not considered to be very good.
In the latter stage of the disease Dad was operated on for a bowel blockage (with a view to removing part of his bowel) but when they opened him up they only did relief surgery (as the cancer had spread too far for a major operation). The treatment after that was just morphine for pain relief.
Dad’s brave battle with cancer ended on 25 February 2009 – ten months after his initial diagnosis of secondary cancer – he survived longer than most.
Following Dad’s death, I went in search of screening testing as I could see the genetic pattern forming and (having always been told I was just like my father and grandmother) did not want to die the same way. My initial enquiries of the medical profession in early 2009 met with remarks such as; “there is no screening for pancreatic cancer”, “there is no known genetic link” and “why are you doing this, you’re too young to get it anyway?”
It was only through being the proverbial ‘pain in the backside’ that my path led me to Dr Jason Grant, Gastroenterologist in Gosford. Dr Grant took my concerns seriously (due to my obvious family history) and suggested I have a CA19.9 blood test and an MRI to allay my fears. This testing was done in March 2009 with a resultant blood level of 32 (considered relatively normal) and nothing showed on the MRI. Dr Grant subsequently advised that I could have the blood test done again in 12 months time as a precaution.
In February 2010 (at the age of 44) I had the CA19.9 test done again and my blood level had risen to 65. This test was repeated in March with a result of 153 and in April with a result of 152.
The constant upward trend of my blood test results (and my obvious family history) rang alarm bells with Dr Grant who then referred me to Dr David Williams, a Gastroenterologist with a particular interest in pancreatic cancer, at St Vincent’s Hospital, Sydney.
Dr Williams agreed to see me in April 2010 and performed my first Endoscopic Ultrasound. This test subsequently confirmed the presence of a 9mm cyst on my pancreas.
This finding resulted in Dr Williams recommending I see Robin Hay, a Genetic Counsellor in Gosford. Robin was so interested in my story that he contacted Professor Allan Spigelman, of the Hunter Family Cancer Service, and asked him to also see me. His interest was apparent when he offered to travel to Gosford to see me rather than asking me to travel to Newcastle to see him.
My appointment resulted in me being set a project – to research my family history (as far back as possible) to determine how many family members had died of pancreatic cancer, and if there was anyone still alive who currently had (or had been successfully treated for) prostate cancer, melanoma, breast cancer, ovarian cancer or pancreatic cancer; so that genetic testing could be offered to this person to try and identify the problem gene affecting my family.
This research unearthed a first cousin of my father’s who had been successfully treated for breast cancer some years previous. This cousin (who did not know me) subsequently agreed to, and underwent, genetic testing. Unfortunately, however, the problem gene was not identified.
My research also uncovered a number of family members who had been diagnosed with diabetes. Whilst my father’s mother (who died of pancreatic cancer) did not have diabetes nor did she drink or smoke – her husband, my father’s father had suffered from diabetes towards the end of his life, although it was not his official cause of death.
Being very interested in tracing my family tree, I also found that my grandmother’s paternal grandfather (who died in 1907 at the age of 58) had died of diabetes – could this have been pancreatic cancer? We will never know.
What is very apparent though is that the occurrences of pancreatic cancer in my family is through the one branch of my family tree – my father’s mother’s birth side – O’Neill (the strong Irish-side of my family).
Since then I have been through many blood tests and Endoscopic Ultrasounds. Currently I am tested every 12 months (increased from six monthly three years ago due to the cyst being stable) at St Vincent’s Hospital, and am part of the Pancreatic Cancer Screening Study at that hospital and the Australian Familial Pancreatic Cancer Cohort study being undertaken by The Garvan Institute, Sydney.
My cyst is now 13 mm in diameter and relatively unchanged since December 2011.
I am now 51 and my long-term prognosis is unknown – will I one day develop pancreatic cancer like my father and grandmother or won’t I? No one can tell me. However, last year Dr Williams told me that my family’s history is one of the worst in their studies, the only other one being a family in Victoria who’s study subject has now been diagnosed with pancreatic cancer.
Living with the knowledge that I could also fall victim to this devastating disease (for which there is no cure and very little treatment on offer) is at times, quite unnerving, and for this reason I have been told many times that I don’t have to be a part of these studies if I don’t want to. However, I have two children of my own and my primary reason for undergoing this constant testing is to not only look after my own health, but to help try and prevent this disease claiming another member of my family.
I do my best to look after myself by keeping fit, eating well, having my regular tests, (help the cause where I can) and, above-all, try not to worry too much about something that hopefully won’t happen to me.