PHILADELPHIA (WUSA9) -- Imagine fighting a relentless illness that will attack many different parts of your body, with tumors that can pop up at anytime and anyplace.
Jan Eisner of Bethesda went to the ER with a kidney stone. While running routine tests, a scan discovered a mass on her liver. It turned out to be a neuroendocrine tumor.
Eisner says, "I was diagnosed in 1999, so I was 37 years old. My boys were 2 and 3 years old, so this was news that I wasn't expecting.
Neuroendocrine tumors run along the endocrine system. They can show up anywhere in the body, and at multiple times. Her first tumor started in her stomach, then spread to her liver and gall bladder.
Then another one appeared in her pancreas, and one popped up in her neck. Now she has one in her chest another in her left lung.
Eisner says, "It's sort of like playing 'whack-a-mole', so you take out a tumor site and then it will pop up somewhere else. I figure you have a couple of choices, sit on the couch and wallow or get up and get things done."
She underwent chemotherapy and the removal of her pancreas, as a result she is now diabetic. Then, in search of other treatment options, she went to Switzerland for a peptide radiation therapy that was not offered in the U.S..
After that, she traveled to Penn Medicine's Roberts Proton Therapy Center to get a targeted proton therapy. It zaps the tumor without dishing radiation to other organs. Only a few facilities in the U.S. offer this treatment.
As a result of the proton therapy, she no longer has the tumor in the neck. She still has tumors in her chest and left lung. She travels to Penn Medicine's Perelman Center for Advanced Medicine regularly for checkups.
Dr. David C. Metz, of Penn Medicine says, "There are 2 types of presentations, there's the hereditary associated disease state and those that are called sporadic."
Jan's tumors are considered sporadic, no one can identify the cause and the condition doesn't have a cure. The only thing she can do is constantly undergo tests to find tumors.
Dr. Metz has worked with Jan for the last several years. He says the medical community is learning more about neuroendocrine tumors as time goes on. Literally every patient with neuroendocrine tumors is different.
"The diagnosis was always very difficult to make because they present in unusual ways," adds Dr. Metz.
Dr. Metz says, "As you live with these tumors longer and longer the tumors get bigger and bigger, they grow faster and faster."
Treatment requires a multidisciplinary approach that includes gasterologists, endocrinologists, oncologists, surgeons, and many other specialists.
Dr. Metz says, "Because there is nobody to say, 'this is my area of involvement' they see various kinds of docs."
Though frustrated with the many different doctors and various treatments, Jan will not be defeated, she is an avid marathon runner. Even without a pancreas, she finished the Chicago Marathon last year. That was her 15th race, and she will keep running marathons.
Eisner says, "I am not going to give up what I do everyday to the disease."