Navigating misinformation about cholangiocarcinoma - Cleveland Clinic

Navigating misinformation about cholangiocarcinoma – Cleveland Clinic

When you are diagnosed with cancer, the first thing you want to do is gather all the information possible so that you are ready to tackle your path to recovery.

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But a quick Google search will likely reveal more information than you might be prepared for.

How do you know which treatments are right for you? How much attention should you pay to survival rates? And what lessons should you listen to when it comes to addressing your diagnosis?

This process can be especially confusing for anyone diagnosed with rare cancers such as cholangiocarcinoma (bile duct cancer). oncologist Sunil Kamath, MDExplains ways to avoid falling into a rabbit hole of misinformation and offers help identifying trusted sources.

Tips to avoid misinformation

Before we dive into your next online search, here are some tips to improve your search results and provide you with better support during this difficult time.

Don’t compare cancer types

Not all crabs are created equal.

bile duct cancer It is a rare cancer that affects about 8,000 people in the United States each year. Bile, the fluid that helps you digest food, is carried through the bile ducts (the gutters that carry rainwater) from the liver and gallbladder to the small intestine. There are three types of bile duct cancer:

  • Extrahepatic cholangiocarcinoma is cancer of the bile duct that develops outside the liver.
  • Intrahepatic cholangiocarcinoma is cancer of the bile duct that develops within the liver.
  • gallbladder cancer It is cholangiocarcinoma that develops in the gallbladder.

“It’s like a tree branching,” Dr. Kamath notes. “The main bile ducts are the ducts that are visible outside the liver, but they continue to branch and branch until they reach the intrahepatic microscopic level.”

But cholangiocarcinoma (which comes from bile duct cells) is different from cholangiocarcinoma Liver Cancer, which comes from hepatocytes (hepatocytes). Moreover, cholangiocarcinoma and liver cancer are not the same as lung cancer, kidney cancer, or breast cancer. In fact, all cancers and tumors should be considered different from one another because each type of cancer and tumor grows differently and responds to different treatments. If you try to compare treatments, survival rates, and other data from other cholangiocarcinomas, the comparison will not be person to person.

“You want to make sure you’re reading the information that’s really specific to the original cancer you have,” Dr. Kamath advises. This can be particularly difficult for people with cholangiocarcinoma because while it originates in the bile ducts within the liver, it is often the case with liver cancer. But it is not the same thing as liver cancer. Its treatments and causes are quite different.”

Beware of vulgar diets and supplements

Dr. Kamath cautions against relying on long lists of foods with anti-cancer properties. Many of these lists tend to get their information from small research studies, and these foods are often paired with standard treatment procedures rather than used as a baseline treatment. Even worse are the influencers on social media who claim to have found a cure simply by using supplements or swapping out their regular foods for cliched diets.

“Changing your diet gives you a sense of control over the situation, but that feeling is mostly artificial,” says Dr. Kamath. “From a diet perspective, you want to make sure you’re getting good amounts of protein and getting enough calories so that you don’t lose weight during treatment. Too often, people who buy other fad diets end up losing a lot of weight or poor quality of life because they They lose muscle mass in the process.”

Avoid placing too much emphasis on survival rates

There is no shortage of quick answer results about bile duct cancer survival rate. according to American Cancer SocietyThe five-year survival rate ranges from 2% to 24% depending on the type of bile duct cancer and where it was found at diagnosis. But even these numbers are misleading. The five-year survival rate depends on the stage of the cancer when it’s diagnosed and doesn’t take into account everything in terms of your age, general health, and how well the cancer responds to treatment. It’s also outdated information based on people who were diagnosed and treated at least five years ago. When combined with the many headlines highlighting the aggressive nature of cholangiocarcinoma, the survival rate appears subdued. But Dr. Kamath cautions that this should not be the only information you rely on.

“Among cancers, cholangiocarcinoma is more aggressive and worse than many other types, but to say it’s a death sentence is certainly an overstatement,” says Dr. Kamath. “It’s something that is highly treatable, even for people with this worst-case scenario of advanced cancer. We can treat and control it for longer than people might think.”

Clinical trials and ongoing research and developments such as the Galeri test (a new blood test to screen for cancer) have improved the survival rate for bile duct cancer and will continue to do so.

Rely on trusted resources

While doctors are not entirely sure what causes bile duct cancer to develop, there is ongoing research and clinical trials to investigate the success rate of various forms of assisted therapy. vital signs test. And while there’s still a lot we don’t know, if you’re looking for answers, it’s important to know where to look.

Dr. Kamath suggests looking for information that comes directly from hospital systems, medical nonprofit organizations (such as the American Cancer Society), and government agencies such as National Cancer Institute or other with the “.gov” web pages for additional information after you have received a diagnosis.

For the most accurate information, you should speak to your oncology team or your health care provider. They can determine what will be most beneficial for your specific situation.

“I think the most important thing people should ask their doctor about is ‘What stage am I at?'” Dr. Kamath says. “Keep this in memory. Find the data that Especially at this stage. If something is too general or doesn’t really seem to apply to any one stage, it may be important to find a different resource.”

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