The oncologist who told Doris Evert she was not a candidate for pancreatic cancer surgery never referred to his patient by name. Not once, Evert recalls of her doctor’s impersonal manner. Worse, he refused to give Evert a referral for a second opinion at a nearby comprehensive cancer center.
“There was no compassion at all,” Evert says. “He gave no hope at all.”
Evert, 65, was diagnosed with pancreatic cancer in February 2002, a little over a month after she visited an urgent care center complaining of a sinus infection. A doctor there ordered an ultrasound after learning she was experiencing nagging pain under her right shoulder blade. A few days later she got a call from the clinic telling her the x-ray was fine.
Three weeks later, however, her internist called and asked her to come in right away for a biopsy. She got the news, while on a trip to Belize, that one of the three biopsies taken of her stomach was positive.
As a Realtor, Evert is self-insured. She chose a health maintenance organization to take advantage of group rates offered through her professional trade organization. But it soon became her albatross.
Her internist recommended a medical surgeon within the HMO. This surgeon recommended that Evert undergo the “whipple” procedure, in which the head of the pancreas and a portion of the bile ducts, the gallbladder and duodenum are removed. A portion of the stomach is also sometimes removed.
Evert began doing her own research and learned that a nearby comprehensive cancer center offered more advanced technology in radiation therapy, something she would likely be undergoing after surgery. She tried to get a referral to the hospital, but was turned down.
The operation through her HMO was unsuccessful. After the procedure, Evert asked the surgeon if her condition was terminal. “He said ‘yes,” Evert recalls. “Then he said he had to go to his son’s baseball game.”
Evert tried again at this point to get a referral and was, once again, turned down.
Her internist instead recommended an oncologist within the HMO who put her through a regimen of chemotherapy and radiation. Evert remained as active as she could during these treatments – continuing to work and even driving herself to and from the clinic.
It was about this point that Evert contacted Meg Gaines at the Center for Patient Partnerships.
Evert was assigned to a student patient advocate, Anthea. “She immediately started fighting for me,” says Evert of Anthea.
“When you go through the process you feel hopeless,” Evert adds. “You are already drained, emotionally and physically. You don’t know the steps you need to go through to get the referral. She knew the people and went ahead and did it. She talked to people in the right places.”
Evert says she was in touch with her patient advocate almost daily while undergoing chemo and radiation. She kept feeding Anthea information as her HMO continued to deny repeated requests for a referral.
When Evert finished her treatments, she met with her oncologist to learn the results and her prognosis. Her sister and niece accompanied her.
He told them the tumor had indeed shrunk, but that surgery was not an option.
“He said ‘go home and enjoy your August. The tumor will be back.’”
Evert says the oncologist reacted angrily when she asked for the films from her MRIs and CAT scans so that she could seek a second opinion on her own.
At this point center advocates advised her to seek out all her options and worry about who was going to pay later.
Gaines knew Evert needed the specialized care of a cancer surgeon, not simply a medical oncologist – her only option through her HMO. “It’s not appropriate,” Gaines says. “A medical oncologist doesn’t do surgery.”
Evert made an appointment with a cancer surgeon and a radiooncologist at the comprehensive cancer center. The surgeon said he and the radiooncologist would review her records and get back to her in a week or two.
When Evert retells that conversation, she has tears in her eyes. “He called and said ‘I think you should go for it.’ It was just wonderful news.”
He recommended surgery as soon as possible. Her HMO once again turned down a request to cover the surgery. Two days before the surgery Evert’s appeal of that denial was still pending.
A day before the surgery, Evert began fasting, still unsure if she was going to owe tens, if not hundreds, of thousands of dollars after the procedure. (Evert had had to show financial ability to pay, though was not required to pay up front.)
Gaines recalls Evert called that center that day in tears.
Gaines and the student advocate got back on the phone and called an administrator at Evert’s HMO. “We said this becomes actionable at some point. We need an answer and we need it now.”
The administrator called back in 15 minutes and said the surgery would be covered.
Evert got the news at 5 p.m.
The surgery took 17 hours and the surgeon said her gallbladder was so diseased it should have been taken out during the first surgery. During the surgery, she lost part of her stomach, her entire right colon and the diseased part of her pancreas.
As a result of the diseased gallbladder, Evert developed an abscess that had to be drained with a tube.
Her surgeon apologetically informed her that, because of the placement of her tumor, he couldn’t get to all the cancerous tissue. The radiooncologist suggested a regimen of radiation that could be administered through the same tube that was draining Evert’s abscess. Evert spent a month in the hospital and had to continue to wear the tube to drain the abscess for about six months after the surgery.
Yet, nearly four years later, the cancer has not returned. Evert returned to work and continues to lead an active life which includes travel, golf, tennis, church and family and friends.
Evert, herself, did not deal with HMO gatekeepers while attempting to get referrals and coverage. She fed information on her contacts with medical staff to her patient advocate who took it from there.
“Anthea made the appropriate calls… She saved me from financial ruin.”