Jeanne Ralston-Astalos fears an insurance company could ultimately decide whether she lives or dies.
The 50-year-old mother of two from Northfield is battling an extremely rare kind of cancer — potentially the only case of its kind.
Her doctors at the Cleveland Clinic have determined her best chance for long-term survival is a liver transplant to replace the organ, which is slowly being killed by cancerous tumors that spread from her sinuses.
So far, at least, Medical Mutual of Ohio has refused to cover the procedure, which it classifies as an “investigational/experimental” treatment for her condition and therefore not covered under her insurance policy.
Ralston-Astalos has been told the cost for her transplant ranges from $300,000 to $500,000.
“It’s bad enough you’re fighting an illness, let alone you’re fighting a war with an insurance company so you can live,” she said. “Why should anybody ever have to go through this? Should I sit home and die because I can’t get treatment?”
Medical Mutual received Ralston-Astalos’ appeal letter on Wednesday, according to a company spokesman. Under state and federal law, insurers have up to 30 days after receipting an appeal to render a decision.
When asked to answer questions about Ralston-Astalos’ case, the Cleveland Clinic issued this statement: “We continue to advocate for this patient with the ultimate goal of getting her well. We have yet to exhaust all resources to obtain coverage and at this point the insurance process has not run its course.”
Ralston-Astalos’ ordeal started in July 2011, when she noticed her abdomen was getting bigger several months after she married Jim Astalos.
She mentioned to her doctor during a routine checkup that she was “getting fat,” prompting the physician to examine her midsection and immediately send her for a CT scan.
Though a subsequent liver biopsy confirmed she had cancer, doctors couldn’t determine where the cancer originated. She beat breast cancer 10 years ago, but tests showed her latest bout with the disease wasn’t related to her previous diagnosis.
Ralston-Astalos underwent surgeries to have portions of the cysts on her liver removed and a drain placed to reduce the fluid buildup.
It wasn’t until she traveled to the MD Anderson Cancer Center in Texas in February 2012 that experts there figured out her liver cancer actually originated in her sinus cavities.
The cancer, ameloblastoma, usually doesn’t spread beyond the sinuses, according to a report the Cleveland Clinic and MD Anderson published last year in a medical journal.
“It is known that ameloblastomas may arise in the sinonasal tract but none of cases in the reported literature experienced metastases,” the authors concluded.
Surgery on mouth
In September 2012, Ralston-Astalos underwent surgery at MD Anderson to get rid of the primary cancer by removing the roof of her mouth, half of her jawbone, teeth and most of her sinus cavity. She now relies on a prosthetic palate and oral piece to eat, drink and talk.
Since that surgery, the area around her sinuses has remained cancer free, she said. Testing at the Cleveland Clinic has shown no other signs of cancer throughout her body, except for the slow-growing, metastatic cysts in her liver.
Radiation beads implanted in her liver failed to shrink the tumors, she said. And attempts to completely remove the tumors through surgery have been unsuccessful.
“My liver is functioning,” she said. “But at some point, it’s going to stop. They don’t know when. It’s like sitting around here with a time bomb. When it quits, it quits.”
Transplant candidate
The Cleveland Clinic reviewed her case for several months before deciding to move forward with a liver transplant, she said.
Friends and family members, including her 23-year-old daughter, Chelsea Ralston, offered to be tested to see whether they’re a match to donate a portion of their liver.
In January, she was approved as a liver transplant candidate by the Ohio Solid Organ Transplantation Consortium, the statewide group that reviews potential transplant cases.
But shortly after getting the approval, Ralston-Astalos said her case was put on hold because Medical Mutual declined the Cleveland Clinic’s request to precertify the surgery.
In a letter sent to Ralston-Astalos, Medical Mutual indicated an independent general surgeon and the insurer’s chief medical officer examined the case.
According to the report from the independent physician, “metastatic ameloblastoma to the liver is an extreme rare tumor and this may be one of the only cases that have been seen in the world literature describing liver as a site for metastatis.”
The physician concluded a transplant should be considered experimental “due to the fact that there is no peer reviewed literature or trials in the English language that have published any series of patients using liver transplantation as a treatment for metastatic ameloblastoma to the liver.”
Ralston-Astalos also has a Medicare managed-care plan, but she said the secondary insurer won’t commit to covering the transplant.
Supportive friends
In the meantime, a group of Ralston-Astalos’ friends are planning fundraisers to try to cover the cost of her transplant.
Information is available online at jeannetransplant.wix.com/jeanne-ralston-astalos-fund. Donations to the Jeanne Ralston-Astalos Fund also are accepted at any PNC Bank location.
“She’s just that kind of person you can’t help but do things for her,” said Tim Kmetz, a longtime friend and fellow Nordonia High School alum who is co-chairing the fundraising efforts. “I’ll do whatever I have to to raise the funds.”
Despite the obstacles, Ralston-Astalos tries to remain optimistic.
“I’m not going to sit around and whine about it,” she said. “That’s not going to help. But, yeah, I’m going to fight.”
When her 16-year-old son, Marcus Ralston, asks what will happen if she dies, she calmly reassures him she’s not giving up.
“I’m doing everything possible to stay alive.”
Cheryl Powell can be reached at 330-996-3902 or cpowell@thebeaconjournal.com. Follow Powell on Twitter at twitter.com/CherylPowellABJ.