Katia: I will tell You about my life with a rare cancer

“MY blood tests were perfect, but I continued to feel bad. So I continued to deepen, in order to understand the reason. Until I received the diagnosis: I had an intrahepatic cholangiocarcinoma”. A rare cancer by the name difficult to pronounce, with which Katia lives by about three years: with a mass of about 7 cm in the left part of the liver. Usually this disease, which has its origin in the rapid proliferation and uncontrolled of the colangiociti, the cells that constitute the walls of the bile ducts - it does not give the initial symptoms and this is recognized when it is now at an advanced stage.
diagnosis, “my luck in bad luck - he says - is that the tumor, being in that position, gave me some mild symptoms such as fever, nausea, and poor digestion. Worried, after a week of discomfort in which the symptoms continued to appear, albeit intermittently, I turned immediately to my doctor”. Once you have made the ultrasound, failing to understand the problem, the doctor recommended that She contact a specialist to do the ct scan and then an mri with contrast. “That same day I also had a biopsy, thanks to which it has managed to reach a certain diagnosis. It was been about a month since the beginning of the first symptoms”.
The research online, between nightmare and hope “even when, with the ct scan, the doctors had found an abnormality, the first thing I did was go in search of news on the internet. Then, in the moment I received the diagnosis, I typed ‘intrahepatic cholangiocarcinoma’. It was a nightmare: I read that it was a rare disease and that the chances of treatment and survival were few,” says Katia. On the other hand, however, the online information gave her hope: "I have continued to do online research and reading in order to understand which construct to me. I decided to do the surgery in Padua, because I had read that there was a team at the forefront of”.
The discovery of the mutation and the possibility of testing After the surgery, she has had three months of chemotherapy. Unfortunately, however, after three months came the first relapse. Even after the surgery, in fact, the chances of this type of tumor returns are high. "I have found several nodules: in this case the tumour was not treatable surgically, and I have proposed arterial chemoembolization. But when the tumor began to advance, the only option was to return to in the experimental protocol to try new therapies. So, the doctors have analyzed the genome of tumor to find out if there were mutations which were in the course of the studies. Result? The tumor had mutations in the receptor of the Fibroblast Growth Factor, also called FGFR-2 (present in approximately 15% of patients). “I was definitely not aware of the existence of genetic mutations, but this has opened up a hope - says Katia - why in Verona, I had access to experimental drugs. For seven months of this therapy has been effective: the nodules, in fact, have been dramatically reduced and I was much better. After the intervention, also, I have never had stomach pain, and for each recurrence, the symptoms have been completely absent”. That is not the end, of course, because this is an aggressive cancer and Katia will now have to deal with two metastases to the lung. Always looking straight ahead and relying on doctors that follow it.

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