Making sense of a rare cancer diagnosis

You know yourself pretty well, so when you started experiencing symptoms that wouldn’t go away, you went to see your doctor. At your doctor’s office, you talked about your health, your symptoms and your life, and you underwent a few medical tests. Then you received the news: You have a rare form of cancer you’ve never heard of before.

What do you do now?

“When people are diagnosed with a rare type of cancer, finding information can be difficult and frustrating,” said Mary A. Hobbs-Maluccio, MD, surgical oncologist at East Jefferson General Hospital. “However, it’s important to learn as much as you can and seek appropriate cancer treatment.”

What is a rare cancer?

As the name suggests, rare cancers don’t happen often. According to the National Cancer Institute, a cancer is rare if it affects fewer than 15 in 100,000 people annually. Compare that to skin cancer. According to the American Academy of Dermatology, about 9,500 people in the U.S. receive a skin cancer diagnosis daily. That means there are more skin cancer cases diagnosed in a week than there are rare cancers diagnosed in a year.

Though a single rare cancer doesn’t affect many people, rare cancers make up approximately 25% of all cancer diagnoses. That’s because there are more than 500 rare cancers. These cancers affect various parts of the body, including:

• Anal cavity
• Larynx
• Mouth
• Sinuses
• Stomach

Understanding rare cancers

Cancer occurs when your body’s cells grow out of control. They multiply when they shouldn’t and spread where they don’t belong. Because cancer cells grow naturally in your body, they’re good at tricking your immune system. Sometimes, your immune system even protects cancerous cells. This is true of all cancers, including rare cancers.

However, rare cancers are harder to understand. They may be the result of genetics or geography, lifestyle, environment, or diet. And because the cancers are rare, they’re difficult to research. There simply aren’t enough cases to understand these diseases, making it hard to pinpoint the root cause. Without this knowledge, avoiding the cancer is also difficult. Additionally, fewer cases make it harder to develop new therapies.

Caring for rare cancers

Individualized cancer treatment usually leads to improved results. This is particularly true for rare cancers. A multidisciplinary team of experts is also key.

When dealing with rare cancer, your care team will offer medical advice, resources, support and more. During your cancer journey, your team may recommend one or more of the following cancer treatments:

Chemotherapy—Specialized medication that seeks and destroys cancerous cells

Immune therapy—A type of targeted therapy that helps your immune system do its job better

Radiation therapy—High-energy radiation targets cancerous areas to kill cancer cells

Surgery—A surgeon removes as much of the cancerous area as possible

When existing therapies don’t do the trick, clinical trials can help. These give patients access to new treatments and offer new hope. This is good news, especially for those with rare cancers.

“Thanks to ongoing cancer research, five-year survival rates are up from previous decades,” Dr. Hobbs-Maluccio said. “I expect this to continue until we have as many treatment options for rare cancers as we have for breast, prostate or skin cancer.”

At East Jefferson General Hospital, we provide healthcare for everybody. Our rare cancer program offers clinical trials and advanced treatment options, all provided by a multidisciplinary team focused on caring for rare cancers.

Were you diagnosed with a rare cancer? Expert, compassionate care is available close to home. Learn more about your rare cancer and how East Jefferson General Hospital’s rare cancer program can help.