The third Thursday of every February is celebrated as World Cholangiocarcinoma Day, a disease that only 1% of cancer patients suffer from, which is why it is rare, as Andrés Muñoz, a medical oncologist at the Gregorio Marañón University Hospital, explains to EFEsalud.
And it is so little known compared to others like mom’s, lung or colon that people at the time they receive the diagnosis do not know what it consists of.
What does it consist of?
It is a malignant tumor that appears in the bile ducts. These are the ducts that carry bile and waste generated by the liver and reach the intestine.
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“All of these are called bile duct tumors and we basically have two groups: gallbladder cancer and cholangiocarcinoma,” says the Marañón medical oncologist, who indicates that the symptoms can be very nonspecific.
The signs can range from abdominal pain to fatigue, loss of appetite and weight. Sometimes patients turn yellow from one day to the next, but other times it is so silent that it does not cause symptoms and is diagnosed by an incidental finding.
“We can operate on someone because they have stones in the gallbladder, which are very common surgeries and when we analyze that gallbladder in the laboratory, in pathological anatomy we discover that they have cancer,” Muñoz clarifies.
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And since the symptoms can be so varied, patients have had them for quite some time, confusing them with other banal mild illnesses, which leads to difficulties when establishing a diagnosis.
There is also currently no screening or early detection method, which is another reason why cholangiocarcinoma is diagnosed when it is already advanced, hence the curative options are reduced and survival is low: eight out of ten go to die within the first few years after diagnosis.
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Cholangiocarcinoma treatment
The main treatment for cholangiocarcinoma is surgery.
And then there are other types of treatments such as chemotherapy, immunotherapy, which has also shown benefits against this cancer, and target therapies.
“In recent years we know it better and we are treating this disease better. There have been changes in treatment and management. And not only has the treatment improved, so has the diagnosis,” says Muñoz, who points out that progress has been made in terms of personalized medicine.
Although the situation has improved, research on cholangiocarcinoma is still “very far” from those of other cancers that they do have the visibility that it does not yet have.
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“We also want to focus on rare tumors, which require our attention. Obviously there has been a very notable change, very significant, very favorable, but we still have a lot of work to do,” reflects the Gregorio Marañón oncologist.
Sara’s testimony
Precisely more visibility and investigation It is one of the objectives of the newly created Association of Bile Tract Tumors, ATUVIBI, which is presented this Thursday.
Sara Vítores is one of the promoters. She is coordinator of the program Hoy por Hoy, on Cadena SER. In 2022 she was diagnosed with cholangiocarcinoma. She was extremely tired and she attributed it to the usual fatigue at the end of the day.
“One day I was stretching the duvet and suddenly I said, I can’t even stretch the duvet, and I decided to go to the doctor to have an analysis done, I hoped it was a lack of vitamin or iron,” Vítores tells EFEsalud.
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The transaminases gave strange values and after a biopsy, they informed him that he had an intrahepatic bile duct tumor: “I didn’t even know they existed, to be honest,” he admits.
When cholangiocarcinoma was diagnosed, it was already in a very advanced stage. A year ago he was able to participate in a clinical trial for the specific genetic alteration of his tumor, during which time he had a good quality of life. But the trial failed and did not continue.
How the idea for ATUVIBI came about
Now Sara is with chemotherapy and they are looking at the possibility of introducing immunotherapy.
During the path you are traveling, the idea of creating an association arose.
Ángela Lamarca, a medical oncologist at the Jiménez Díaz Foundation, had been working in the United Kingdom for almost a decade and specializing in bile duct tumors with specialist Juan Valle, who established the standard chemotherapy treatment for this type of cancer.
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And at that time he was very struck by the power that patient associations have and in the United Kingdom there is one specific for this cancer and in the United States another, according to Lamarca told EFEsalud.
“You see the benefit they represent for the patient in terms of emotional support because people with rare tumors often feel very isolated and very alone,” says the oncologist.
The merit belongs to the patients
Hence he began to promote the creation of an association in Spain, but he insists: “The merit is not mine, eh? I just started to mobilize the staff a little.”
The Jiménez Díaz oncologist emphasizes that in Spain there are not so many specialists dedicated to this type of tumors and that is why many know each other and realized that a patient association was needed.
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“It is true that I organized the first meeting, but with the support of my other oncologist colleagues and we did it at the Jiménez Díaz Foundation, where basically what we did was let the patients get to know each other.”
The brand
The first thing they wanted the patients to know is that they are not alone, and that, of course, they are the protagonists: “Everything else is their merit because they have been working hard to create the association,” he says.
Patients have been meeting during this time to constitute it. It is formed by the patients and oncologists They will support her “in whatever way it takes.”
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What do patients demand?
The objectives of the association, as Sara Vítores says, are to help patients with these tumors and provide them with all the necessary information and support. Also raise awareness in society of the importance of research.
“As the number of patients with this cancer is so small, research is dedicated more to other cancers, so there are no medications or screenings like in breast or lung,” says the patient.
Vítores elaborates on this: “There are many advances, so the hope that remains is to hold on to them, but you can only hold on if there is money in research,” he claims.
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But it also seeks to end the “inequality” in access to diagnosis and treatments in the different autonomous communities. In this sense, Vítores assures that she has been lucky enough to live in Madrid, where she has been able to undergo a biopsy without leaving her city and be able to be treated in Marañón and Jiménez Díaz.
“Imagine that you are in a town or a small city, it is much more difficult to get a biopsy,” he highlights.
Informing and raising awareness among public institutions about the seriousness of this disease and the urgency of obtaining resources to support the therapeutic needs of patients is another of ATUVIBI’s objectives.
(With information from EFE)
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