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My Cancer Doesn't Have a Color, Will it Have a Cure?

Publication: Healthy Valley, McAllen

When you think of breast cancer, it’s virtually impossible not to think of the color pink. But what about cancer of the esophagus? What color comes to mind? Likely nothing.

Welcome to the world of rare cancers.

According to the Texas Cancer Registry, there will be 1,042 new esophageal cancer diagnoses in Texas in 2012. Compare that to more than 16,000 expected new breast cancer cases. Other rare cancers (and expected 2012 diagnoses) include Hodgkin’s lymphoma (630), testis (659), larynx (959), and Kaposi’s sarcoma (139). Fewer than 5,000 new cases of bladder, kidney, thyroid, liver, and pancreatic cancer are predicted for 2012 in Texas.

Given the numbers, it’s easy to understand why the most prevalent cancers – breast, prostate, and lung – get more attention and support. But when you or a loved one is diagnosed with a rare cancer, one that doesn’t have a “color,” you will be excused from thinking logically for a moment.

Patients with rare cancers, their families, and medical teams face issues unlike those with more prevalent types. Fewer cases inherently equals less research due to the much smaller number of treatment experiences to learn from, often resulting in fewer treatment options. Rare cancers, like all cancer, are most treatable when detected early, but the lack of familiarity sometimes results in late and incorrect diagnoses. Finding doctors with relevant, specialized experience plays a big role in treating rare cancers.

There’s no painting over these realities, in any color. But there’s plenty of hope and support and a remarkable amount of emerging cancer treatment breakthroughs among rare cancers. Through these recent advancements and promising clinical trials, thousands of people with rare cancers successfully fight the disease.

Even as science, medicine, and technology merge to create tomorrow’s cancer treatment discoveries, thousands of families today are on the front lines of coping with rare cancer. Because the path to a successful outcome is less direct, rare cancer requires more of patients and caregivers than more common cancers. At Texas Oncology, we recommend greater engagement by patients and their families and suggest the following:

Do your homework on your rare cancer. Informed patients are partners with their medical teams in treatment. Recommended sources include: the National Institutes of Health’s U.S. National Library of Medicine (www.nlm.nih.gov), the National Cancer Institute (www.cancer.gov), and the American Cancer Society (www.cancer.org).

Find experts. Identifying a physician who has relevant clinical experience is important. Review physician bios and ask your physician for a recommendation.

Get or create support. Rare cancer support groups can be hard to find. It may be necessary to find a virtual support group online or create a support team tailored to your situation. The National Organization Against Rare Cancers (www.curerarecancer.org) can be helpful. Remember the support of friends and family is critical, regardless of cancer type. Some local support groups are designed for people affected by any type of cancer.

Texas Oncology’s website (www.TexasOncology.com) is a great resource for information about rare cancers.

Medical experts don’t always agree on what cancers should be designated as rare. But the medical community is united in its fight to conquer every kind of cancer and in every patient. Viewed through that prism, we see the bright, true colors of hope and healing.

Dr. Arvind Bhandari is a medical oncologist at Texas Oncology–Sugar Land, 1350 First Colony Blvd. Dr. Branden Hsu is a medical oncologist at Texas Oncology-Katy, 1331 W. Grand Parkway North, Suite 340, and Texas Oncology-Houston Memorial City, 925 Gessner Road, Suite 550, in Houston.

This story originally appeared in Healthy Valley. 

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