Cancer patients help themselves by finding doctors, gathering data

Douglas Oliverius recently threw a surprise party in honor of his wife Janice’s 57th birthday. Imagining the celebration would come might have surprised both of them six years ago. In March 2008, Janice was diagnosed with stage 3B breast cancer.

“The doctor told her, basically, ‘You need to get your life in order, because your survivability with the cancer, we project to be about 30 percent,’ ” Douglas recalls. He made her promise to marry him when she kicked the illness. About two years later, after a medical visit in California, he took her to the beach and proposed.

The way the diagnosis came about was just as disturbing as the cancer itself. Janice had just moved to Las Vegas, her hometown. After finding a lump and having a mammogram, she received a letter in the mail confirming that everything was fine. It wasn’t.

“I worked for a medical office for a lot of years, and I was a big advocate of reading your reports,” she says. “I didn’t read my report. I got a phone call from a doctor a few days later saying, ‘I’m here to tell you that you have cancer, and I hope you have a good plan in place.’ ”

With help from a colleague and breast cancer survivor at the cardiology office where she worked, Janice scrambled to pull together her treatment and resources.

Even under better circumstances, “a cancer diagnosis is a mind-blowing experience,” says medical oncologist Karen Jacks of Comprehensive Cancer Centers of Nevada. The first step for new patients, she advises, is “to arm themselves with a physician they’re comfortable with, first and foremost.”

Given that the vast majority of cancers are found by primary care physicians, she says, that means a referral to a medical oncologist or, in some cases, a surgeon, who can help the patient navigate the system.

Patients need to realize, at the outset, that cancer treatment isn’t usually the work of one physician. It takes a physician team that often includes a surgeon and a radiologist who studies imaging to help diagnose the stages of cancer.

“I’ll have patients come in, and they’ll think, ‘Oh, it’s just going to be one doctor,’ ” she adds. “And it ends up being overwhelming for them.”

Patients must next arm themselves with information. Jacks often sends her patients to the American Cancer Society website, which helps explain what diagnoses mean and what kinds of treatments to expect.

Linda Ivers, an American Cancer Society patient navigator based at Sunrise Hospital’s Adult Oncology unit, recommends that the newly diagnosed check out the free tool kit on the Cancer Society website, which includes questions to ask one’s doctor. Another option is to call the Cancer Society’s referral desk, which is staffed 24/7 by trained, bilingual staff. Staff will ask questions, send information, and make referrals to navigators such as Ivers. New patients from throughout the state of Nevada call Ivers, who doesn’t merely dabble with diagnoses.

She considers herself a “resource connector,” addressing everything from helping patients find and pay for treatments, to covering the cost of transportation and lodging for those who must come into town for treatment — to providing free cosmetology lessons and wigs, scarves and makeup for women battling the toll the treatment takes on their appearance.

True stories abound about people who allow their cancer to progress because they don’t have money or insurance for treatment. Ivers says it happens because people often just “don’t know.”

“I’m not going to let them just sit there and worry about it,” she says. “The bottom line is that there’s always something for them. It may not be exactly what they want. For instance, a patient may want to go to Cancer Treatment Centers of America when they don’t have any money. That’s probably not going to happen. But as far as getting treatments out there, they’ll get it.”

Physician Steven Piantadosi, director of the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center in Los Angeles, says other “pieces” for patients to address with their oncologist, early on, are getting a second opinion, therapeutic trials and getting support.

“There’s a reason that we call these opinions,” he says, adding that every aspect of a diagnosis is based on physicians’ experience and training. “It’s worth talking on the phone. Having records reviewed.”

With a diagnosis newly in hand, patients often overlook a valuable option, said oncology-certified nurse Jaime Richardson: clinical trials, the route by which new drugs gain Food and Drug Administration approval. Richardson is cancer clinical trial navigator at Cedars-Sinai. Trials involve comparing a group of patients receiving the current “gold standard” of treatment to a group receiving a new treatment plus or minus the “gold standard,” to determine what’s better, she says.

“There’s a very common belief out there that clinical trials are only a last resort when you’ve tried all other therapies and they’ve stopped working,” she observes. “But what people don’t generally know is that there are clinical trials for newly diagnosed patients.”

One often overlooked advantage of trials, Piantadosi says, is that they are usually as safe or safer than conventional therapy because of the attention paid, not only to the study protocol, but also to the individual patients who are participating in the trial.

“Usually a trial represents more in the way of diagnostic testing, more contact with nursing, more visits to the physician,” Piantadosi says. “This is part of the so-called upside of trials, is that the health system is generally more attentive to the patient on the trial.”

Piantadosi says supportive care can address everything from therapeutic programs for dealing with “chemobrain” — the phenomenon of temporary memory loss caused by chemotherapy — to exercise and art therapy. Or, social work and psychiatry to help patients and families get through issues such as loss of work.

Jacks believes patients can do better physically when they get that support.

“If you have a way to eliminate stress and take that piece away, patients are going to do better,” she says.

A resource she recommends to patients is The Caring Place, a program of Nevada Childhood Cancer Foundation. It offers support groups and complementary care, including yoga, exercise classes, massage therapy, Reiki energy work, and art programs, not only for people with cancer, but also for their families — at no charge.

“We know that immune systems can function better when we get the stress levels down,” says Pati Kearns, The Caring Place’s services director. “Most importantly, people can be happier and more at ease. That impacts relationships and families.”

Janice Oliverius, who is in remission, sought out The Caring Place at its opening in 2008, after her mother read about it in the newspaper. She’s been going there ever since. Her husband found a men’s support group there, and had Reiki energy work. When Janice herself began receiving Reiki, her nausea from chemotherapy eased.

“When someone receives a diagnosis, it’s like pulling the rug out from underneath them,” Kearns says. “This is a way to get someone’s feet under them once again.”