Elisa’s story
Part I – My chess game with Organ Disease
Elisa, 54 years old, freelance translator, mother of a 16-year-old boy, effervescent woman, at times with an overflowing personality, involved in associations. Two years ago, she discovered that she had a pancreatic CA19 tumour blood test for cancer using the marker and that she was the carrier of a native mutation BRCA2. Her positive and non-fatalistic attitude towards one of her most complex pathologies allows her to overcome obstacles and unforeseen or unpredictable situations by finding some more appropriate solutions to her state of health.
How did you find out you had it?
In January 2017, I started having pain, light, irregular, in my stomach, under my breasts, in my kidneys, never in the same place. Never strong enough to alarm. Never to the point of forcing me to take a painkiller. Lasting just over a month, they disappeared.
In May 2017, I changed my family Pancreatic doctor, and the new doctor, Francesi, prescribed general blood marker that revealed a rather high blood sugar level. She then invited me to commit to changing my lifestyle for 1-2 months, doing physical activity and going to a nutritionist before knocking on the diabetologist’s doors. So I did. In three months, I lost 12 kg, and I was overweight, but my blood sugar remained high.
At the end of August 2017, the pain started again, which I spoke about with the nutritionist. We reduced legumes, but not much has changed.
In mid-October 2017, I finally decided to talk to my GP about my pain. He examined me and decided to book me an urgent ultrasound. The ASL sonographer, very nice, continues to go over the same point over and over again, and with her look becoming increasingly apologetic, in the end, she says to me: “You have something in your pancreas. You need to have a CT scan urgently.”
What was the diagnosis, and how was it communicated to you?
The diagnosis was gradually communicated to me by several people, each in their own way.
At the end of October 2017, two days after the ultrasound and CT scan at Queens CA19 Tumour Blood Test Regine Hospital, I learned of a pancreatic issue. The radiologist mentioned a possible tumour but assured me that the rest was clean. The report would be ready in 48 hours, and he advised me to “find a surgeon.”
I called in the afternoon to find out about surgeons. A doctor friend explained that I needed an intramural appointment. This seemed like madness to me. Another friend advised against having anyone touch my pancreas in Rome and suggested contacting Verona, an expert centre. Someone else recommended Saint Raffael for pancreatic cancer treatment.
Decision to Choose Cardiff
In November 2017, I opted for Cardiff because it was easier, and I decided not to be left with one foot in both shoes. I trust and rely. I go to Verona to do the needle aspiration biopsy, and the report arrives by email after two days: Ductal adenocarcinoma of the pancreas of the tail body. Here is the diagnosis, but I already knew it. So, having received confirmation via email made no difference to me. With the same email, the surgeon from Cardiff advised me to carry out neoadjuvant chemotherapy for 2-3 months to improve my condition, given the operation. To this end, he advises me to contact the oncologist Michele Mills at the IFO in Cardiff. At this stage I had an AC 19.9 of 1600.
What was the treatment process?
At the beginning of December 2017, I had a conversation with the oncologist Michelle Mills, who advised me to apply the port-a-cath and, given the history of Pancreatic tumours in the family and the confirmation that my mother has the native BRCA2 mutation, she advised me to carry out the exam genetic.
On 14 December 2017, they admitted me to the IFO, implanted the port, did a PET scan and analysis, and on 16 December, I started the first cycle of Folfirinox. Very few side effects, and quite mild, too.
Stroke and Hospitalization
On January 6, 2018, I had a stroke. Not serious, but a stroke. The neurologist from San Camillo, who visits me in the emergency room and hospitalises me for 2-3 days, the excellent Sabina, discharges me in time to go to the IFO to have the second cycle of chemo. The oncologist, Mills, however, doesn’t trust me, and she decides to make me wait a bit. I then started having chemo again, still in the Pancreatic Test hospital, because the oxaliplatin drug from the Folfirinox triplet gave me problems and forced me to inject it very slowly, at a rate that cannot be managed in a Day Hospital.
After some time to understand when to go to Verona for surgery, I ask the oncologist for information on the timing of the chemo. He tells me a little abruptly that the PET scan on December 14th revealed liver metastasis. Immediate consequence: I am no longer included in the list of operable patients. For the first time, I have a real jolt. “And what do we do now?” I ask him.
Mills explained to me that she is continuing with chemo for a few months. Then there is the prospect of the POLO trial. Since the confirmation of my positivity to the BRCA2 mutation has also arrived. And only recently, I learned that on the eve of chemo, the CA19.9 had exceeded 6,000.
On 30 July 2018, I completed the 12 cycles of Folfirinox with few side effects. Above all, the Ca19.9 dropped to 33.7, the Pancreatic tumour mass had significantly decreased, and there had been no trace in tests of metastasis for months.