Specific Challenges of Rare Cancers (2024)

Around 5.1 million people in the European Union (EU) + the United Kingdom are affected by rare cancers and there are more than 650,000 new cases diagnosed every year [1]. Individually, each of the 198 identified rare cancers is considered "rare", but collectively they represent about 24% of all cancer cases diagnosed in the EU27+ the United Kingdom each year, including rare adult solid tumours (13%) and rare haematological cancers (8%) as well as all childhood cancers (1%).

Rare cancers are therefore common occurrences which generate a number of specific challenges due to their very nature as rare cancers. Rare cancer patients may be discriminated against simply because of the numbers of the disease they suffer from. Paediatric cancers as well have been specifically concerned by a number of challenges linked to rare diseases as they often require specific approaches, in line with their distinct age-related biological, clinical and organizational characteristics. Even the very definition of rare cancers has been the product of a necessary consensus amongst the oncology community.

Specific challenges posed by rare cancers:

  • Late or incorrect diagnosis
  • Lack of access to appropriate therapies and expertise
  • Lack of commercial feasibilityin developing new therapies
  • Difficulties in conducting well-powered clinical studies
  • Few tissue banks

References

  1. Secretariat of the Special Committee on Beating Cancer.Background Note on Paediatric and Rare Cancers. European Parliament, 15 Feb. 2021.
Specific Challenges of Rare Cancers (2024)

FAQs

Specific Challenges of Rare Cancers? ›

Rare and less common cancers affect only a small number of people. They are more difficult to diagnose than more common cancers, and as a result, are more likely to be diagnosed at a later stage, potentially making them more difficult to treat.

Is rare cancer harder to treat? ›

Rare and less common cancers affect only a small number of people. They are more difficult to diagnose than more common cancers, and as a result, are more likely to be diagnosed at a later stage, potentially making them more difficult to treat.

What are the challenges of cancer? ›

Up to 8 in 10 patients with advanced cancers will experience severe weight loss and lethargy due to a wasting syndrome called cachexia. This severely impacts quality of life and limits therapeutic options.

What is the burden of rare cancers in the United States? ›

Results: In Canada and the United States, 21% and 22% of all invasive cancers were classified as rare, respectively.

What are the challenges of rare cancer? ›

Specific challenges posed by rare cancers:

Late or incorrect diagnosis. Lack of access to appropriate therapies and expertise. Lack of commercial feasibility in developing new therapies. Difficulties in conducting well-powered clinical studies.

Can you survive a rare cancer? ›

The 5-year overall survival of patients with rare cancers is 48.5% and considerably worse than in patients with more common cancers (63.4%) [2].

What rare cancer kills quickly? ›

If defining "fastest-killing" cancer is based on which cancer has the worst 5-year relative survival rate, then it would be a tie between pancreatic cancer and malignant mesothelioma (a relatively rare cancer in the U.S. with about 3,000 cases a year).15 However, there are some differences in survival rates for these ...

What cancer has no cure? ›

Although there are no curable cancers, melanoma, Hodgkin lymphoma, and breast, prostate, testicular, cervical, and thyroid cancer have some of the highest 5-year relative survival rates. Cancer is a disease that causes cells to grow and multiply uncontrollably in certain parts of the body.

What is the deadliest cancer? ›

Lung and bronchus cancer is responsible for the most deaths with 125,070 people expected to die from this disease. That is nearly three times the 53,010 deaths due to colorectal cancer, which is the second most common cause of cancer death. Pancreatic cancer is the third deadliest cancer, causing 51,750 deaths.

Why is cancer so challenging? ›

The difficulty in treating cancer is that it's not a single disease, but rather a group of diseases. In total there are more than 100 different types of cancers. Cancers are also caused by different things, so no one strategy can prevent them.

What do cancers struggle with? ›

Cancers can let their emotions cloud reason and push them to hyper focus on their own reaction versus the reality of a situation. Conversely, Cancers sometimes struggle to put themselves out there and choose instead to retract into their shell, Caves says, for fear that they will be hurt or humiliated by someone.

Are rare cancers harder to treat? ›

Of these, six out of every 100,000 cancer cases in Europe is a rare form2. For these patients, it is often tantamount to a difficult treatment journey. On top of learning of their diagnosis, the rarity of the cancer type means that existing health options are inappropriate, few in number, or even non-existent.

How rare are cancers? ›

Rare cancers are those that affect fewer than 40,000 people per year in the U.S. As a group, they make up just over a quarter of all cancers. Because rates of cancer in children are very low, all children's cancers are considered rare. A quarter of all cancer deaths each year are due to rare cancers.

What is the incidence and survival of rare cancers in the US and Europe? ›

In total, 196 RC were classified as rare in both populations. Of these, 43 had incidence rates significantly different by at least 0.2 per 100 000:34 higher in the US and 9 higher in Europe. Five‐year net survival for all RC combined significantly differed: 54% in the US and 48% in Europe.

What is the hardest cancer to deal with? ›

Pancreatic cancer is the deadliest common cancer. More than half of people die within three months of diagnosis. With research underfunded and left behind, people are left with only hope to hang on to.

What does rare form of cancer mean? ›

(rayr KAN-ser) As defined by the National Cancer Institute, cancer that occurs in fewer than 15 out of 100,000 people each year. Most types of cancer are considered rare, and they are often more difficult to prevent, diagnose, and treat than the more common cancers.

Which cancer type seems to be least treatable? ›

Which cancer has the lowest survival rate? There are 6 cancers with low survival rates: lung cancer, liver cancer, brain cancer, esophageal cancer, stomach cancer, colon and rectal cancer. According to experts, the above 6 cancers have low survival rates mainly because these diseases are difficult to recognize.

At what point is cancer no longer treatable? ›

Stage 4 cancer is not always terminal. It is usually advanced and requires more aggressive treatment. Terminal cancer refers to cancer that is not curable and eventually results in death. Some may refer to it as end stage cancer.

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