Switzerland only hope for resident with rare cancer

Patient can't get treated in U.S., relies on credit cards to pay bills

Janice Pence’s doctors say there’s a good chance she can beat the rare form of cancer that’s crept into her liver, pancreas, bone marrow, spine and breast.

But there’s a catch.

The treatment she needs is only available in Basel, Switzerland. And it’s not cheap.

“To get over there, I figure, costs about $2,000 to $3,000 for me and somebody to help me get around and for food and hotel,” said Pence, 69.

“The treatment itself costs $8,000,” said Pence, who used to own Pence’s Garden Supply with her former husband, Fred.

The couple, who divorced in 1986, had four children.

“I live on Social Security now,” Pence said. “Fixed income.”

Pence recently moved in with her niece, Norma Bloom, and Bloom’s husband, Bob, in their west Lawrence home.

“I had a place,” she said, “but I got to where I was so sick, I was frightened to be alone.”

Lawrence resident Janice Pence has a rare form of cancer that can be treated only in Switzerland.

Using a nephew’s spare frequent-flyer miles and a few thousand dollars raised among friends and relatives, Pence and Norma Bloom went to Switzerland for three days in mid-June.

“I put the rest on credit cards,” Pence said. “I don’t like to do that, but I don’t have much choice. I won’t beg – it’s humiliating – but I’m not ready to die yet. I have grandchildren to enjoy.”

Pence’s children have offered to help pay off her mounting credit card debt over time.

Medicare does not cover medical care outside the United States.

A second treatment is set for mid-September.

“It usually takes two treatments, sometimes three,” Pence said. “What they do is they shoot a radioactive isotope directly into your vein, and instead of it killing the good cells and the bad cells, it leaves the good ones alone.”

So far, Pence said, the June treatment appears to have been successful.

“I was in a lot of pain and I was pretty nauseous,” she said, “but I kept thinking if it cures my cancer, it’ll all be worth it.”

But the treatments are not for most cancer patients; instead, they’re limited to those with carcinoid tumors, which are fairly rare and slow-growing.

“Carcinoid tumors are aggregates or groups of malignant cells that arise from neuroendocrine cells (nerve cells that secrete active products) that are present in a wide variety of tissues (intestine, stomach, appendix, lung, etc.),” Pence’s oncologist, Dr. Matt Stein, wrote in an e-mail to the Journal-World.

Pence said doctors discovered she had a carcinoid tumor during stomach surgery in 1996.

“At the time I was told not to worry because they’re very slow growing and wouldn’t be a problem for 15 years.” By then, she said, “they thought there would be a cure.”

But by 2001, the tumors had spread to her liver, pancreas, bone marrow, spine and breast.

“I went through six months of chemotherapy,” Pence said. “Dr. Stein said I had months to live, not years.”

Stein, an oncologist at The Cancer Center at Lawrence Memorial Hospital, referred Pence to Dr. Thomas O’Dorisio at the University of Iowa’s medical center. O’Dorisio put Pence in touch with the hospital attached to the University of Basel, Switzerland.

How to help

To help offset Janice Pence’s medical expenses, donations may be sent to:

Janice Pence Medical Fund
Douglas County State Bank
300 W. Ninth St.
Lawrence, 66044

The treatment is not yet available in the United States, Stein wrote, because they affect so few patients: “The medication has been ‘trialed’ in the U.S. at certain university centers on a limited basis with success. Unfortunately, because it is a rare disease (few patients in this category), there is little impetus for the FDA to move on its approval.

“Candidly, it boils down to the following reality: without lobbying pressure from the pharmaceutical industry in regards to potentially large-volume profitable drugs, the FDA shows little interest in moving these types of medication forward when they only affect a very small subgroup of patients.”

Meanwhile, Pence said she’s filling out every credit card application that comes in the mail.

“Back in 2001, I looked death in the face,” she said. “I went through all the things you go through – anger, denial, feeling sorry for myself. I didn’t want to see or talk to anybody. I was miserable to be around.

“Now, all of sudden, there’s hope. There’s something out there on the horizon for me. I’m going to hang on. I’m not giving up.”