My Chess Game with PC
Clara, 54, freelance translator, mother of a 16-year-old boy, an effervescent woman, with an overflowing personality at times, involved in associations, discovered two years ago that she had pancreatic cancer and was a carrier of a native BRCA2 mutation. Her positive and non-fatalistic attitude towards one of the most complex diseases allows her to overcome obstacles and unexpected or unpredictable situations, finding solutions that are more appropriate to her state of health.
How did you discover that you had pancreatic cancer?
In January 2017, I started to have pain, light, irregular, in my stomach, under my breasts, in my kidneys, never in the same place. Never strong enough to alarm me. Never to the point of forcing me to take a painkiller. They lasted just over a month, then disappeared.
In May 2017 I changed family doctor, and the new doctor, Olivia Smith, prescribed general blood tests that showed a rather high blood sugar level. Obviously 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 door. So I did. In three months I lost 12 kg, 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 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, keeps going over the same spot over and over again and with a look that becomes more and more sorry, finally 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 communicated to me gradually by several people, each in their own way.
At the end of October 2017, two days after the ultrasound, after the CT scan at the New Queen Margherita hospital, the nice head of radiology tells me that I have a problem with my pancreas (maybe he told me about a tumor, but I don’t remember), but that the rest is all clear, exceptionally the report would be ready in 48 hours. He says goodbye to me with a “Find a surgeon”.
In the afternoon I start calling, to find out where the surgeons are … . A doctor friend explains to me that you need to make an appointment intramoenia with a surgeon, who then puts you on the list of people to be operated on within the NHS. In my naivety it seems crazy to me. Another tells me not to let anyone in London touch my pancreas because there is no surgeon expert in pancreas in London area and is available to put me in touch immediately with Manchester, a center of excellence in the sector. Another calls me explaining that the Chelsea Hospital has everything needed to treat pancreatic cancer. In November 2017 I opt for Manchester, because it is easier, and I decide not to have one foot in two camps. I trust and I rely. I go to Manchester to have a biopsy with fine needle aspiration, and the report arrives by email after two days: Pancreatic ductal adenocarcinoma of the body and tail. Here is the diagnosis, but I already knew it. So having had the confirmation by email made no difference to me. With the same email, the surgeon in Manchester advises me to undergo neoadjuvant chemotherapy, for 2-3 months, to improve my conditions in preparation for the operation. For this purpose he advises me to contact the oncologist Mathilda Miller of the IFO in London. At this stage I had a CA 19.9 of 1600.
What was the treatment path?
In early December 2017 I had a meeting with the oncologist Mathilda Miller who advised me to apply the port-a-cath and, given the history of tumors in the family and the confirmation that my mother has the native BRCA2 mutation, advised me to take the genetic test.
On December 14, 2017, I was admitted to the IFO, they implanted the port, they did a PET scan and tests and on December 16, I started the first cycle of Folfirinox. Very few side effects, and rather mild ones too.
On January 6, 2018, I had a stroke. Not serious, but a stroke. The neurologist at Saint George, who examined me in the Emergency Room and admitted me for 2-3 days, the very good Ayda Nicolini, discharged me in time to go to the IFO to do the second cycle of chemotherapy. The oncologist, Miller, however, does not trust me and decides to make me wait a bit. Then I start the chemo again, always in hospital, because the oxaliplatin drug of the Folfirinox triplet is giving me problems and forces me to inject it very slowly, at a pace that is not manageable in a Day Hospital. After some time, to understand when to go to Manchester to have the surgery, I ask the oncologist for information on the timing of the chemo. He tells me a bit brusquely that the PET scan on December 14th has detected a metastasis in the liver. Immediate consequence: I am no longer among the patients eligible for surgery. For the first time, I am truly shocked. “And now what do we do?” I ask him. Miller explains to me that the chemo will continue for a few months and then there is the prospect of the POLO trial, since in the meantime the confirmation of my positivity to the BRCA2 mutation has also arrived. And only recently did I learn that on the eve of chemotherapy, CA 19.9 had exceeded 6,000.
On July 30, 2018, I completed 12 cycles of Folfirinox with few side effects but, above all, the Ca 19.9 dropped to 33.7, the tumor mass had significantly decreased and there had been no trace of the metastasis for months.
In mid-August 2018, I entered the POLO trial, a double-blind Phase III trial that studies the impact of the drug Olaparib on patients with a native BRCA mutation who have already used a platinum-based drug in the first line. Miller explained to me that this trial aims to verify a potential maintenance therapy for pancreatic cancer and that in any case, after 12 cycles of Folfirinox, I should stop for a while and see what happens. So, in addition to being promising, Olaparib seems to be tailor-made for subjects like me and seemed to be the best thing that could have happened to me.