The cancer waiting game: When the recommended treatment is nothing

For patients who choose ‘watch and wait,’ putting off treatment can be a relief — and a source of stress
cancer waiting game: for patients who choose watch and wait
Illustration by Kimberly Carney / Fred Hutch News Service

Ford Roosevelt doesn’t usually think about his cancer.

He was diagnosed with prostate cancer when he was 61. His first doctor, a cancer surgeon, recommended removing the organ, but after seeking other opinions, Roosevelt decided to pursue a less aggressive strategy.

Eight years later, not much has changed. Roosevelt still has his prostate — and his tumor. He sees his doctors every six months, has a biopsy every two years, and — aside from the medication he takes to manage minor side effects from the tumor — that’s it.

At the time, this approach of delaying treatment for certain slow-growing cancers — termed “watch and wait,” or active surveillance — was a bit outside the norm for prostate cancer, Roosevelt said. But for certain tumor types, prostate cancer included, researchers are realizing that early treatment may not change patients’ chances of survival and are recommending a more hands-off approach to cancer management.

For the most part, Roosevelt is grateful to forego — at least for now, and maybe for good — the potentially toxic treatments many others face. Now 69, the Los Angeles resident has seen several friends go through the treatment wringer, including friends with prostate cancer who had their prostates removed.

“They look at me like, ‘Yeah, you have it, but you lucked out,’” said Roosevelt, who is participating in a clinical trial at the University of California, Los Angeles on watchful waiting for men with early-stage, slow-growing prostate cancer. Roosevelt was the 40th patient to enroll in the study, he said, which now numbers approximately 500 men watching and waiting.

“It’s stressful when I talk to people about it. It is there,” Roosevelt said, referring to his cancer. “But I don’t really give it a lot of thought in-between visits.”

Ford Roosevelt
Ford Roosevelt is participating in a "watch-and-wait" clinical trial at the University of California, Los Angeles for his slow-growing prostate cancer. Photo courtesy of Ford Roosevelt

Watch and wait isn’t an approach doctors recommend for all early-stage cancers. But for several tumor types, research has shown that early treatment doesn’t boost survival over watchful waiting. Patients whose doctors may recommend this approach include those with certain early, slow-growing or stable versions of prostate cancerbreast cancer (in its early stage, also known as ductal carcinoma in situ, or DCIS), thyroid cancer and certain types of blood cancers. (Watch-and-wait is more controversial for some cancers than for others, and it’s also debated whether some early-stage cancers, such as those of the thyroid, even classify as cancer at all.)

For most cancers, there are standardized guidelines for when doctors recommend active surveillance, said Dr. Stephen Smith, an oncologist at Seattle Cancer Care Alliance who specializes in lymphoma. But he recognizes that it can be stressful for patients to be told they have cancer in the same breath as a recommendation against immediate treatment.

“It’s very understandable to want to treat a cancer in your body,” said Smith, who is also a clinical researcher at Fred Hutchinson Cancer Research Center. In such situations, his patients often ask questions like “‘I know this is here, why aren’t we treating it?’ ‘Won’t it just get worse?’ or, ‘What are we watching and waiting for? Because I don’t want that to happen,’” he said.

Doctors can’t answer many of those questions in a quick, routine appointment.

“You have to have time to have this conversation,” Smith said. “This is a nuanced and important conversation.”

The evidence behind watch and wait

Patients whose doctors recommend watch and wait can feel reassured, though, that they are not in any immediate danger by choosing to delay treatment. That goes back to the tumors’ slow growth, also known as indolence, Smith said. Based on extensive evidence from past studies, researchers know that certain slow-growing tumors aren’t going to suddenly change their nature, at least not on the timescale of the recommended surveillance schedule.

For example, a large study published last month that followed more than 1,600 men with early-stage prostate cancer found that those being actively monitored were no more likely to die of their disease in the 10 years following their diagnosis than those who had their prostates removed surgically or who underwent radiation. And researchers studying indolent lymphomas have likewise found that early treatment with chemotherapy and radiation does not boost survival over watchful waiting.

How “active” a patient’s active surveillance is depends in part on the type of cancer. Patients with watch-and-wait prostate cancer, like Roosevelt, often undergo regular biopsies, imaging and PSA tests. Those with early-stage chronic lymphocytic leukemia, or CLL, can be monitored with a simple blood test. Those with follicular lymphoma — a form of non-Hodgkin lymphoma that is the most common type of watch-and-wait blood cancer — get regular CT scans, although a monitoring blood test for this disease, too, may be on the horizon, Smith said.

Watch and wait also doesn’t mean missing a “window” for a cure — there’s no evidence that these slow-growing blood cancers are more likely to be cured with early treatment, Smith said. And some rare watch-and-wait patients even go into spontaneous remission without treatment.

Not every patient can accept the idea of doing nothing for their cancer, Smith said, and he and his colleagues work with their patients to reach an approach that, as much as possible, is acceptable for both parties. Smith pointed to a recent study that compared watch and wait with Rituximab, an antibody treatment for blood cancers, in patients with slow-growing non-Hodgkin lymphoma. The patients who received Rituximab were better able to cope with and adjust to their disease, and they were able to put off starting chemotherapy for longer than the patients assigned to watchful waiting — although, again, there was no difference in survival between the groups.

Dr. Stephen Smith
Dr. Stephen Smith talks with a patient in an exam room at the Seattle Cancer Care Alliance. Fred Hutch file photo

“It’s a balance of treatment-related side effects, anxiety, and your long-term chances,” Smith said. “It’s sometimes a challenge, and you have to look at the trade-offs.”

The majority of patients with watch-and-wait blood cancers will need treatment within about five years of diagnosis, Smith said, but some can be in that no-treatment limbo for a decade or more. “We all have patients in our clinic who have never had treatment but were diagnosed 10 or more years ago,” he said.

Nancy Evans, 76, has been living in watchful waiting for five years. Diagnosed with a slow-growing non-Hodgkin lymphoma when she was 71, she’s mostly gone on with life as usual in-between medical appointments.

“I’m at five years now. I say, well, give me the next five, and maybe five more, or 10 more,” Evans said.

Her diagnosis did inspire her to train and raise funds for Obliteride, the fundraising bike ride that supports Fred Hutch, for four years running.

“I’m healthy and I’m living with cancer,” Evans said.

Taking back control

Some patients come quickly to acceptance and are primarily grateful to delay treatment. But some have a harder time sitting with watchful waiting, said Dr. Jesse Fann, director of psychiatry and psychology services at SCCA.

“While people are often initially relieved that they do not have to immediately undergo treatment and face the potential side effects and life disruptions associated with treatment, a watch-and-wait approach can be stressful for some because they don’t feel like they are actively ‘doing something’ about their cancer,” Fann said in an e-mail. “Even if they aren’t receiving treatment, the fear of the unknown and a sense of lack of control can result in feelings of helplessness, anxiety or depression.”

For those grappling with a recent cancer diagnosis and a recommendation not to start treatment, experts offer some ways to help allay anxiety: 

  • Question, question, question. More information and a better understanding of the risks and benefits of treatment versus watch and wait, and the evidence behind these approaches, can help some patients feel more comfortable with their treatment (or lack thereof), Fann said. “It’s important for patients to ask as many questions as needed about all the treatment options, including watching and waiting,” he said.
  • Consider getting a second opinion. Roosevelt, the prostate cancer patient, came to the watch-and-wait decision after receiving a second opinion, even though his first doctor recommended surgery. Evans also sought out a second opinion when her first doctor recommended delaying treatment; in her case, the second doctor, Fred Hutch lymphoma researcher Dr. Oliver Press, agreed with the first, which helped her feel confident in her decision, she said.
  • Know that there may be intermediate options. “Every patient is unique and brings a breadth of values and experiences that will influence their decisions. It’s our role as health care providers to try to understand these considerations and to tailor our treatment approach accordingly,” Fann said. For patients who are anxious about watch and wait, Smith said he proposes more frequent check-ins or scans for the first three to six months after diagnosis, which he thinks can be the most difficult period for many of his patients.
  • Ask your doctor whether there’s a clinical trial that’s right for you. There may be some clinical trials offering experimental treatments for patients with early-stage cancers that traditionally wouldn’t be treated right away, Smith said. Even if the trial doesn’t include an active treatment, enrolling can help patients feel like they are doing something proactive about their cancer. “Sometimes that helps flip a switch for patients,” he said. “If they can do something that, although it’s experimental, it’s generating knowledge or addressing important questions, this can put them at ease.”

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Rachel Tompa is a former staff writer at Fred Hutchinson Cancer Center. She has a Ph.D. in molecular biology from the University of California, San Francisco and a certificate in science writing from the University of California, Santa Cruz. Follow her on Twitter @Rachel_Tompa.

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