Louise, age 43: Pancreatic Neuroendocrine Tumour, diagnosed September 2015
I had tummy trouble during my teenage years and was given numerous different pills and mixtures from my GP, but these only seemed to work for a short time and I would have to go back to the GP for something else. I was a smoker, so as you can imagine, I got told off and this was always blamed for my troubles. I stopped smoking nearly 5 years ago.
During my late thirties I began to have pains in the front and middle of my chest that radiated through to my back and on bad days it would radiate all round my body and I would be on the floor in agony, only gaining real comfort on all fours or resting with my elbows on my knees, bent over in a chair.
As these pains became more frequent, three to four times per week, my GP sent me for an ultrasound scan of my gall bladder.
Upon completion of the scan the sonographer advised me to return to my GP next day as the scan had revealed a mass on my pancreas and hot spots in my liver. I was absolutely devastated as I knew that “mass” is cancer and I felt sick as I walked out of the Hospital.
The following morning my GP confirmed my fears by informing me that he thought that I may have Pancreatic Cancer. This came as a terrible shock to me, my family and friends. I asked why he suspected this because other than the pain in my stomach and back, I had no other symptoms, I was not jaundiced, I had not lost lots of weight and my stools were completely normal.
I was then referred me to a General Surgeon who sent me for a CT scan which confirmed the mass in my pancreas and liver hot spots. The surgeon thought that I looked to well to have full blown pancreatic cancer so he sent me for an Octreotide scan to get more detail information on the mass and hot spots. This involved 2 days of scans with a specialist isotope injected into my bloodstream, when I received the results of the scan from my oncologist she informed me that they suspected I had a neuroendocrine tumour on my pancreas. My life changed that day, my world came crashing down, I thought “that’s it, I am going to die!” they also suspected I had this for 3–5 years before it was diagnosed.
My oncologist then referred me for an endoscopy and simultaneous biopsy, the result of which confirmed a neuroendocrine tumour on my pancreas.
My oncologist prescribed Afinitor, which is a biological chemotherapy drug that I take daily, alternating 5mg and 10mg each day, so far I have had very little side effects. I also take regular Morphine and am also prescribed Orimorphe for breakthrough pain, I am also on anti-sickness and various other tablets.
I was in and out of hospital for 8 months after my diagnosis as I kept getting high temperatures and was also violently sick, they kept me in each time for a few days to check for infections, but, I am happy to say I have stabilised now.
I was also introduced to Karen, whom is my Specialist Nurse and I can call on her for anything I need or if anything is bothering me, I have also recently been introduced to my Macmillan Nurse called Donna.
Three months after I began the Afinitor treatment a had a scan which showed a 20% regression of the tumour, however the next scan 6 months later showed that the disease has progressed slightly. My Oncologist is writing to the Liverpool Hospital to see if I can qualify for a radiolabelling treatment called PRRP, this involves being given a fusion of Lutetium Dotatate which is given intravenously over a half hour period, you are also given a protein infusion for 4 hours at at the same time to protect your kidneys.
I am looking to the future and hoping I can get the treatment in Liverpool, as in most cases it is successful and I feel it would help my quality of life, as right now, because of all the medication I take, I can sometimes feel lethargic and have trouble getting out of bed.
I hope this helps people to understand more about Neuroendocrine Pancreatic Cancer and how difficult it can be to diagnose, stabilise and treat.