About Rare Cancers (2024)

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. Although new treatments are always being developed, finding new treatments for rare cancers is very hard for many reasons. The MyPART network was started to make it easier to find treatments for rare cancers.

Why are rare cancers challenging?

Rare cancers are challenging for patients, doctors, and scientists.

For patients:

  • It often takes a long time from the time you think something is wrong to the time when doctors know that you have a rare cancer and what kind of cancer it is.
  • It is hard to find doctors who know a lot about your cancer and how to treat it.
  • It is hard to know what to do when doctors don’t agree on how to treat your cancer.
  • You may need to travel far from yourhome and family to get treatment for your rare cancer.

For doctors:

  • You may not know what to tell your patient about what to expect with their rare cancer.
  • You may not have been trained in how to treat this type of rare cancer.
  • It is hard to find an expert in the rare cancer who can answer questions or to whom you can refer your patient.

For scientists:

  • There may be no information about the rare cancer to give you ideas on which drugs could treat it.
  • There may be no animal or cell models of the rare cancer in which to test your ideas.
  • There may not be enough tumor samples from rare cancer patients available for your research.
  • If you have an idea of a drug that could treat the cancer, it may be hard to find enough patients with the rare cancer to test your idea.
About Rare Cancers (2024)

FAQs

What defines a rare cancer? ›

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 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.

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.

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

Together, these rare cancers represent 20% of all cancers diagnosed in the United States during 2009 through 2013. Of these 181 rare cancers, 119 cancers are considered very rare, that is, with an incidence rate ≤0.5 per 100,000. These very rare cancers represent only about 3% of all cancers diagnosed each year.

What rare cancer kills quickly? ›

However, there's one rare type of thyroid cancer — anaplastic thyroid cancer (ATC) — that's regarded as one of the deadliest diseases in the world. ATC has a death rate of nearly 100% and a median survival time of about four months following diagnosis.

How rare is all cancer? ›

Overall, about 4 of every 10 cases of ALL are in adults. ALL is not a common cancer, accounting for less than half of 1% of all cancers in the United States.

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.

What rare cancer spreads fast? ›

Merkel cell carcinoma tends to grow fast and to spread quickly to other parts of your body. Treatment options for Merkel cell carcinoma often depend on whether the cancer has spread beyond the skin.

What is the symbol for rare cancer? ›

The zebra print ribbon is the awareness ribbon for uncommon or rare diseases and cancers including but not limited to neuroendocrine tumors, carcinoid cancer, Ehlers-Danlos Syndromes, Whipple's disease and awareness of other rare diseases, cancers and disorders.

What cancers are rare and aggressive? ›

Rarest Types of Cancer
  • Adrenal cortex carcinoma.
  • Chronic myeloid leukemia.
  • Ewing sarcoma.
  • Eye cancer.
  • Gallbladder cancer.
  • Hairy cell leukemia.
  • Hepatoblastoma.
  • Kaposi sarcoma.
Apr 5, 2023

What are the hardest cancers to fight? ›

Ovarian Cancer

A cancer diagnosis is never good news, but there are five types that are are particularly deadly: pancreatic, ovarian, lung, glioblastoma and triple-negative breast. These cancers are often diagnosed late, can be difficult to remove surgically and rebuff most therapies.

Which cancers have no cure? ›

Types of treatable but not curable cancer
  • Chronic lymphocytic leukaemia.
  • Chronic myeloid leukaemia.
  • Myeloma.
  • Pleural mesothelioma.
  • Secondary brain tumours.
  • Secondary breast cancer.
  • Secondary bone cancer.
  • Secondary liver cancer.

What are the top 2 cancers in the United States? ›

The most common type of cancer on the list is breast cancer, with 313,510 new cases expected in the United States in 2024. The next most common cancers are prostate cancer and lung cancer. Because colon and rectal cancers are often referred to as "colorectal cancers," these two cancer types are combined for the list.

Why are some cancers rarer than others? ›

Most cancers start in certain types of cells, such as skin cells and the cells lining the organs of the body. A cancer might be rare because it started in a different type of cell than usual, for example in a bone cell.

What is the most common of all cancers that occur in the United States? ›

The Top 10 Cancers of America
  1. 1 – Skin cancer. Skin cancer is divided into the non-melanoma and melanoma categories. ...
  2. 2 – Lung cancer. ...
  3. 3 – Prostate cancer. ...
  4. 4 – Breast cancer. ...
  5. 5 – Colorectal cancer. ...
  6. 6 – Kidney (renal) cancer. ...
  7. 7 – Bladder cancer. ...
  8. 8 – Non-Hodgkin's lymphoma.

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].

Which cancer type is the least curable? ›

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.

Which diseases are considered rare? ›

Some of the most well-known rare diseases are:
  • Ehlers –Danlos Syndrome (EDS)
  • Sickle Cell.
  • Cystic Fibrosis.
  • duch*enne Muscular Dystrophy (DMD)
  • Haemophilia.

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