Mount Shasta woman battling rare form of cancer

Skye Kinkade
JoAnna Woody is battling a rare form of cancer: epithelioid hemangioendothelioma, known as EHE for short.  Contributed photo

Mount Shasta's JoAnna Woody doesn't intend to let a battle with a rare type of cancer stop her from achieving her goals.

For the past seven weeks, the 23 year-old has been in Boston, Mass. participating in a clinical trial at Dana-Farber Cancer Institute.

JoAnna had just turned 22 when she was diagnosed with epithelioid hemangioendothelioma, a cancer so rare that it affects only 0.01 percent of the cancer population. There are less than 300 known cases worldwide.

JoAnna said she she'd been having pain in her abdomen for about six months. One night it became so severe she visited the emergency room at a hospital in Sacramento, where she moved after graduating from College of the Siskiyous in 2011.

"They did CT scans and ultrasounds and found spots, unknown nodules on my liver," JoAnna said.

She was admitted to the hospital and a biopsy of the nodules confirmed she had the rare cancer, which affects the lining of the blood vessels in various organs, including the liver and lungs.

After much research, JoAnna's mom, Cindi Titzer, found a pathologist at the Cleveland Cancer Clinic who has the most knowledge about EHE. She contacted him directly and asked him who would be the best doctor to see, JoAnna said. He referred her to Dana Farber.

JoAnna said there is no known treatment that works with 100 percent effectiveness to cure EHE. The clinical trial she's participating in consists of three pills a day. The theory behind the treatment is to block the protein the EHE cancer is attacking, thereby shrinking the tumors.

JoAnna said EHE is not responsive to traditional cancer therapies such as radiation or chemotherapy, which would damage the liver anyway. In most cases, patients who have a liver transplant will see EHE return in the new organ.

JoAnna said she is the first EHE patient to be put on the trial, which is still at stage one, however, it has been successful in people battling other types of diseases.

She began the first cycle of treatment February 19 and will be finished April 16. She'll be flying back to California a few days later.

"If we see changes that the treatment was successful, I'll be returning here twice a month to be seen by doctors and receive the medication," JoAnna said. Unfortunately, the medication cannot be administered closer to home because it is still in the trial stage and must be monitored for trial maintenance.

JoAnna said she's hopeful the trial will be successful, both for herself and for others battling rare diseases like EHE. "There are so many out there who don't have answers or a cure," she said.

An online search for epithelioid hemangioendothelioma (which is unpronounceable for many, including some cancer nurses she works with, JoAnna said) nets few reliable results.

The most comprehensive explanation of the disease comes from Boston Children's Hospital, which works with the Dana-Farber Institute. According to the hospital, EHE occurs in about one in 1 million people and is often diagnosed by primary physicians. There are also no specific symptoms for EHE.

JoAnna said she is lucky she was diagnosed so quickly.

Before learning about her disease, JoAnna was working at a store in the Sacramento International Airport. She had just finished certification to become a phlebotomist and recently found out she passed her national exam. Now she'll send her paperwork to the California Licensing Committee to receive her Phlebotomists License.

"I really enjoy the field, and I hope to continue in phlebotomy," she said. "I definitely haven't let (cancer) stop me."

JoAnna was raised in Mount Shasta and graduated from Mount Shasta High School in 2008. Her parents, Cindi Titzer and Eugene Woody, are both Mount Shasta residents.

"This definitely makes me appreciate things more. People, life. You can't let anything stop you from achieving your goals," said JoAnna. "You can't let the small things get to you."