Bile duct cancer: what do we know about this rare pathology, which affected Clémentine Vergnaud and today the Hérault resident Marta ?

The first treatment for bile duct cancers is surgical. Midi Libre – PHOTO OF ILLUSTRATION SYLVIE CAMBON

With "My life facing cancer", a moving podcast in 16 episodes, Franceinfo journalist Clémentine Vergnaud, who died on December 23, raised awareness of bile duct cancer, which is rare and aggressive. Today, Marta, a young mother from Hérault, who went to the United States for treatment, also talks about it. On the occasion of World Cancer Day, this Sunday, February 4, Professor Eric Assenat, oncologist at Montpellier University Hospital and at ICM Val d'Aurelle, explains this what we know about the disease. 

Cholangiocarcinoma is a rare and aggressive cancer. Target population, symptoms, treatments… Professor Eric Asenat, hepato-gastroenterologist and oncologist at Montpellier University Hospital and ICM Val d'Aurelle, takes stock of the situation.

Professor Eric Asenat, oncologist at the ICM and the Montpellier University Hospital. DR

What can we say about cholangiocarcioma, the little-known scientific name for bile duct cancer ?

It's a fairly rare cancer, with around 2,000 new cases per year in France. But it's a cancer that still has a poor prognosis: overall survival is less than 15% at five years. There was a call for projects last year from Inca (National Cancer Institute) to create networks around rare cancers and poor prognoses in France. Cancer of the bile ducts was one of them, as were cancers of the esophagus and stomach, pancreatic cancer, the incidence of which is increasing, and brain cancers.

How does cancer of the bile ducts manifest, we are not on an organ, but on a network…

Exactly. We even talk about the biliary tree. The bile ducts begin in the liver, intrahepatic, with microscopic ducts, which join to form right and left bile ducts, and then there is a trunk that we will call the common bile duct, which will bring the bile into the intestine. And alongside that, there is the gallbladder.

In fact, when we talk about bile duct cancer, we often distinguish three groups. It's the same disease, but the risk factors are not the same. It's a rare cancer that affects older people, over 70, or younger people like the young patients who publicized their cancer.

We have genetic forms, unexplained forms… It's a cancer that is more common in Southeast Asia because there are parasites that infect the bile ducts. We almost never see him at home. But we see cancers linked to viral infections, after hepatitis B or hepatitis C.

How is this cancer detected?

There is no screening. Either we have cancer of the intrahepatic bile ducts, and at this time, we discover a nodule in the liver on an imaging assessment, or and most often, the cancer is revealed by jaundice and an alteration of the general condition. This is a problem.

In France, Acabi, the association for bile duct cancers, carried out a survey two years ago which showed that when people arrive with symptoms, we often discover the disease at an advanced stage, often not operable and their state of health does not allow them to be treated immediately with chemotherapy or anything else. 60% of people who have a bile duct diagnosis don't even get treatment.

"In recent years, we have had more therapeutic options"

We're still here ?

There are still things that are changing even if you have a rare cancer with a poor prognosis. For years, there was nothing other than surgery or chemotherapy. We have made several advances: on the front line, for non-operable people, we offer people chemotherapy and immunotherapy. Studies show that immunotherapy can work, and we are only at the beginning, we have a lot of hope on this.

The second thing that has changed a lot is the possibility of doing personalized medicine by looking for molecular anomalies that we will find in a third to 40% of patients , especially among young women. Medications exist and are available for early access. The tests are positive. 

In recent years, we have had more therapeutic options. So, we try to work on the pathways: as soon as we have a suspicion of bile duct cancer, patients are referred to specialized centers so as not to waste time because we will lose chances.

How is the surgery done ?

When it's a nodule in the liver, it's pretty simple. If it's an extra-hepatic cancer, it's like having pancreatic surgery. The most complicated thing is the intermediate, cancer of the hepatic hilum, under the liver. 

Bile duct cancer is rare and aggressive. SOPHIE WAUQUIER

The new drugs you were talking about are in therapeutic trials ?

No, we've already done the testing. We are in an early access system, with requests file by file. But at the moment, they are not reimbursed. And new trials will arrive in a few months, with new molecules which will have several targets, via specific antibodies. 

"Due to the early access system, we are in the good European average"

How is France positioned, it is late, it is ahead… ?

Due to the recent early access system, we are in the good European average. 

Where there is a real problem in France is the disparity. There are centers experienced in the systems, others not. I have colleagues who are good doctors, who practice in peripheral centers, and who do not have the time to do these files. And not all centers do molecular biology testing.

But depending on the situation, we sometimes refer patients to Gustave-Roussy in Paris, Léon Bérard in Lyon, or Toulouse… It is important to work in a network.

But there are also new treatments arriving, which are not reimbursed and which do not have early access in France. It's frustrating when trials are opened in Spain, Germany, the United States. Not everyone has the means to go to these countries. 

There are many rare cancers ?

At the University Hospital and the ICM, we have a biased view because we are going to recruit these rare cancers. Broadly speaking, there are common cancers, breast, prostate, colon and rare cancers which represent less than 15% of cancers. But there is sometimes more progress among the latter. We have the impression of stagnating a little in the most common cancers.

Days like World Cancer Day allow messages to be sent ?

When we look at the numbers, the majority of us will have cancer in our lifetime, and we will be cured. It's important that this subject is no longer taboo. We have the impression that we have more impact on operations like Pink October, Movember, Blue Mars when we target a population. 

Bile Duct Cancer Day is February 15. 

Patients speak out, they also lift taboos…

It's clear, after all the media coverage of the subject, patients are calling, asking about new treatments… I think this pressure from patients will make doctors move. What is currently happening with bile duct cancers happened fifteen years ago in endocrine tumors. Many new drugs have arrived, and doctors have gotten into the habit of sending their patients to expert centers so that there is no loss of opportunity.

Clémentine Vergnaud and Marta chose to talk about it

His podcast "My life facing cancer" said much more than the cancer of the bile ducts from which she suffered: the announcement, the treatments, the battle despite the often fatal outcome… Franceinfo journalist Clémentine Vergnaud, who died last December 23, at 31 years old, talks candidly about his daily life with the rare disease. Marta, a 33-year-old young mother from Hérault, also chose to publicize the same illness to benefit from last-chance treatment in the United States. 

Leaving on January 24, she has just given her news on the site La Cagnotte des relatives, where a collection was made. open to finance the trip and therapy: "I am officially accepted to participate in this event. the clinical trial. The start of the protocol is scheduled for February 8, announces the young woman, “supported by her oncologist”, " Montpellier. In the meantime, she "is taking additional exams" and "breath".

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