In this Saturday, March 30, 2019 photo provided by the American Association for Cancer Research, Billy Foster speaks during the organization’s annual meeting in Atlanta. (Scott Morgan/AARC via AP)

People living with incurable cancers in U.S. urge more research

Many patients now live for years with advanced cancer

Tom Smith hesitated to buy light bulbs guaranteed for up to 10 years, thinking they’d outlast him. Terry Langbaum debated filling a prescription for a $13,000-a-month drug that keeps cancer from worsening for three months on average and carries six pages of warnings.

“There are so many of us living with cancers that can’t be cured,” Langbaum said. “We study the treatments but we don’t study what it’s like to be the person going through treatment.”

Millions of people live with metastatic cancer — disease that has spread through the body and is considered incurable. They are surviving longer as treatments improve, often seeing cancer subside and flare again and again. Now many are pushing to be included more widely in research and to have it focus more on the patient’s point of view.

“It’s really about time that happened,” said Dr. Elizabeth Jaffee, deputy director of Johns Hopkins University’s Sidney Kimmel Cancer Center. Patients should be asked what side effects and risks they’ll accept, “not just treated as research subjects,” she said.

READ MORE: Immune system therapy shows wider promise against cancer

Jaffee is president of the American Association for Cancer Research, and its annual meeting this week in Atlanta featured many talks on the need for involving patients more in metastatic cancer research. Smith is a doctor and palliative care chief at Hopkins who is being treated for metastatic prostate cancer. Langbaum is a Hopkins administrator who developed three other cancers from radiation treatments for her first one 37 years ago. Smith and Langbaum wrote about their experiences Wednesday in the New England Journal of Medicine.

Guidelines on how cancer survivors should be monitored later in life often assume the disease is in remission rather than still being treated, they wrote. Many patients now live for years with advanced cancer: Sixteen per cent of people with widely spread lung cancer survive five years. Patients wonder if they should have genetic testing, how they’ll deal with the cost of treatment and whether their doctors can keep up with the latest discoveries.

“We could also use some guidance even on seemingly irrelevant health decisions,” such as whether it’s worth it to be tested for other medical conditions or to take a cholesterol-lowering medicine “when you don’t even know if you should take a chance on purchasing airline tickets for a summer vacation,” Smith and Langbaum wrote .

Smith said hormone therapy and dozens of radiation treatments for his prostate cancer caused extreme fatigue. A marathoner, he said he “went from somebody who could run 50 miles, or 26 miles, to somebody who gets short of breath going up the stairs.”

“I’ve got terrible sleep, hot flashes every 45 minutes,” mood swings and depression, he said. Last summer, “I actually admitted myself to the hospital so I wouldn’t kill myself.”

A good psychiatrist, help from his family and a support group, and a new antidepressant have helped.

When she was 34, Langbaum was treated for Hodgkin lymphoma with radiation that led to breast and stomach cancers in later years. Two years ago, doctors found an unusual and inoperable soft tissue cancer called a sarcoma between her throat and windpipe. She said she has lived “in this constant fear of the other shoe dropping.”

Billy Foster, a jazz pianist and radio show host from Gary, Indiana, who spoke at the Atlanta conference as a patient advocate, talked about the uncertainty cancer patients live with. Foster had a cancerous kidney removed in 1996, but in 2007 learned the disease had spread to his lungs, liver and brain.

“They say if you go five years, you’re kind of in the clear,” but that’s often not true, Foster said. He joined a study testing an experimental drug that helped him for five years until the company abandoned it.

“It wasn’t working for enough people but it was saving my life,” Foster said. His doctor persuaded the company to keep making the drug for him for another year, long enough for a new drug to come out that seems to be keeping his cancer in check.

Several studies are examining “what allows some people to live a very long time with incurable cancer,” said Dr. Mark Burkard, who is leading one at the University of Wisconsin in Madison for breast cancer. Around 750 women have given extensive details on their treatments and lifestyles, and tumour samples are being analyzed for genetic clues.

READ MORE: Colorectal cancer researcher needs more B.C. survivors

Langbaum and Smith say they are focusing on living. She filled the prescription she’d been debating. He bought the long-lasting light bulbs.

“I figured, even if I can’t enjoy them, the next person who lives in our house might,” he said.

Marilynn Marchione, The Associated Press

Like us on Facebook and follow us on Twitter.

Just Posted

Shots fired during Sylvan Lake and area crime spree

Sylvan Lake RCMP worked with other agencies to arrest four over the long weekend

Sylvan Lake McDonald’s raises more than $5,000 during McHappy Day

Year to date, the Sylvan Lake location has raised over $13,000 through fundraising efforts

Red Deer County firefighters dispatched to High Level

Four crew members and a fire engine are assisting in battling the out of control wild fire

Sylvan Lake family ‘humbled’ by support as son undergoes cancer treatment

Zane Baker was diagnosed with a brain tumour in 2017 and will now travel to Florida for treatment

Sylvan Lake increases Municipal Enforcement activity along lakefront

With more activity in the downtown and lakefront area, officers will be more visible during summer

VIDEO: Canadian breaks women’s world record for longest plank

Dana Glowacka, of Montreal, held a plank for four hours and 20 minutes

New poll suggests one-third don’t want politicians to wear religious symbols

Local politicians shouldn’t be allowed to wear hijabs, crucifixes or turbans on the job, survey suggests

Raptors fans far from home adjust plans to watch pivotal playoff game

Raptors currently lead the playoff series 3-2, and a win Saturday would vault them into NBA finals

Alberta NDP cries foul as Speaker Cooper names new legislature clerk

Shannon Dean will replace Merwan Saher as the clerk of the assembly effective immediately

‘Her life mattered:’ New trial ordered in death of Indigenous woman Cindy Gladue

In a 4-3 decision, Supreme Court said evidence about Cindy Gladue’s sexual history was mishandled

Emergency funds for High Level evacuees to start flowing by Monday

About 5,000 people in High Level and surrounding communities have been out of their homes for a week

Five takeaways from the Court of Appeal ruling on B.C.’s pipeline law

It’s unclear how many tools are left in B.C.’s toolbox to fight the project

No-vote option: Alberta legislature changing rules to allow MLAs to abstain

The changes are expected to pass, given that Kenney’s party has a majority of seats

Scheer says it would take Conservatives five years to balance budget

Scheeraccused the Liberal government of spending $79.5 billion of previously unbudgeted funds

Most Read