A group of lung cancer survivors was chatting online last May about what they thought was a big problem: Influential treatment guidelines published by a consortium of prominent cancer centers didn’t reflect an option that several people thought had saved their lives. They wanted to change that.

The guidelines from the National Comprehensive Cancer Network are important because they’re often a first stop for an oncologist trying to develop a treatment plan after a patient’s diagnosis, Chris Newman, one of the patient group’s members, told Shots. But the guidelines don’t always reflect newer and less proven treatment options that may be offered only at big academic cancer centers, she said. Patients might miss out on treatments that could help them, if the guidelines aren’t up to date.

That’s what Newman and others thought was happening for some patients with a type of advanced non-small cell lung cancer. When cancer has spread, or metastasized, beyond the original site, it’s diagnosed as stage IV. And it’s historically been a pretty black and white diagnosis. With most forms of cancer, you have metastases or you don’t, says Paul Okunieff, a radiation oncologist and director of the University of Florida Health Cancer Center. Patients whose cancer has spread are often offered chemotherapy or supportive care rather than surgery or radiation to remove the tumors, on the assumption that it’s too late to prevent further spread.

But some research suggests that patients with oligometastases, or a limited number of tumors (Okunieff says it’s fewer than three or five, depending on whom you ask) may get significant benefit from more aggressive treatment. That possibility wasn’t reflected in the NCCN guidelines.

On a whim, Newman looked on the NCCN website and realized the guidelines were up for their annual review. In fact, the deadline for submitting suggested revisions was a little more than a month away. She knew this was usually a task for professionals, but decided to go for it anyway. (The worst that could happen, she reasoned, was that they’d “round-file it.”)

Newman called on the expertise of current and former online community members. (The site is run by the for-profit company Inspire.) Several of them credited their long-term survival — despite a stage IV diagnosis — to surgery for oligometastases.

For example, George Haughton, now 62, had surgery more than 15 years ago to remove an egg-size brain tumor as well as the small primary tumor in his left lung. “I didn’t think the surgery was going to do anything,” he said. “But I had to do everything possible because my twin sons were 6 years old.” He had some chemo and later some targeted radiation for a recurrence of the brain tumor about a year later, but has had no treatment since 2000 and is cancer-free.

Some online community members helped Newman edit the proposal. Others recruited clinicians to support their efforts — one even went to the annual meeting of the American Society of Clinical Oncology to buttonhole potential allies. Another obtained the full-text copies of the scientific studies they’d need to buttress their argument. Some donated office supplies and even Twizzlers to Newman, who was the lead author of the proposal. Some of the 15 clinicians who officially supported their effort read early drafts and made some suggestions. (Okunieff was one of them.)

And when the updated guidelines were released, they included some of the group’s suggestions. One key phrase from the revision, which took effect Jan. 1, was: “Aggressive local therapy may be appropriate for selected patients with limited-site oligometastatic disease.”

Joan McClure, senior vice president of clinical information and publications for the NCCN, says most suggestions for guideline changes come from the major cancer centers that make up the network. A smaller number come from the drug industry or from established advocacy groups. A proposal from an ad hoc patient group like this one is “not so common, but still very welcome,” she says. Brian Loew, CEO of Inspire, says he was “thrilled, but not surprised,” to hear about the social network’s activism. (Another example: A woman with a very rare heart condition used an Inspire-hosted community to find other patients with the problem, and then to jump-start research at the Mayo Clinic.)

Newman, who is 62 and a survivor of stage III lung cancer, calls her group’s success a “small, but very important victory.”

She’s careful to say the group isn’t advocating this treatment for just anyone. There are risks to surgery, and while there are observational studies to support aggressive treatment for oligometastases in a select group of patients, there’s not been a randomized controlled trial to test it.

But for those with a limited number of metastases that can be safely removed, “our argument is that this may be the last decision these people ever get to make,” says Newman. “It should be up to them, with the assistance of their clinician, to decide the boundaries of risk versus the benefit.”

It’s hard to say how many people might be affected by the change, because so much will depend on an individual’s disease and preferences. David R. Jones, chief of thoracic surgery at Memorial Sloan Kettering Cancer Center, who wasn’t involved in the proposal, says about half of non-small cell lung cancer patients have metastasis — so are stage IV — when they’re diagnosed. (This is why lung cancer is so deadly.) A small subset of those might have oligometastases and be eligible for treatment, he says. At Memorial Sloan Kettering, patients who fit the bill are typically discussed at a meeting of the tumor board, where specialists from many disciplines weigh in on how best to manage an individual case. Like Newman, he thinks it should be part of the conversation for eligible patients. “We need more options,” he says.

Newman says she’s usually pretty cynical about the ability of an individual or small group of patients to make a difference, but that this victory has changed her thinking. “It’s motivated all of us as far as being able to make a difference,” she says. Now she and her fellow patients areeach considering what other changes they might push for.

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