Getting Ahead of Lymphedema with Proactive Testing

By Matt Phillion

While breast cancer deaths have been declining in the U.S., diagnoses for women 50 and younger have been on the rise. To help these younger patients avoid long-term side effects and live full lives post-treatment, proactive survivorship care is essential.

Recent updates from the National Accreditation Program for Breast Centers (NAPBC) now include bioimpedance spectroscopy (BIS) as a key tool for preventing lymphedema—a debilitating condition that impacts up to one in five breast cancer patients as a result of cancer treatment.

“There’s no lack of attention in the medical world about breast cancer as a disease,” says Steven Chen, MD, MBA, breast cancer surgeon and Chief Medical Officer for ImpediMed. But, he notes, there is still room to increase the amount of attention other parts of treatment and recovery receive in the overall discussion.

Chen has been a longstanding advocate for BIS and whole-person care, proactively screening for lymphedema in his patients.

Chen explains that he sees an opportunity to help survivors live better lives after treatment.

“We’re so good at treating breast cancer now that the vast majority of early-stage cancer patients survive,” he says. “But now, instead of just focusing on survival, we need to ask: what is their life going to be like? Now that we’re fairly sure they’ll survive, how do we tailor their treatment so they experience a minimum impact over the rest of their life?”

Even if diagnosed early, Chen explains, patients would expect some form of surgery: potentially some form of radiation, as well as often hormone treatment, and with more significant cases, chemotherapy is involved.

“When they come out the other end of these treatments, we want to make sure they’re doing the best they can,” Chen says. “Depending on their cancer stage, their life expectancy may not be shorter than it would be if they didn’t have cancer, so why are we okay with telling people whatever happens, ‘You survived’? We need a culture shift. We spent centuries learning how to keep people alive, and it’s hard to get out of that mentality. It puts you in a mindset that if you can just survive, that’s a win.”

For some cancers, Chen says, simply surviving is winning. But there’s a chance to strive for more in breast cancer treatment.

“Now that we’ve done the most important thing, making sure you survive, how do we now make sure you thrive?” he says.

This is where a focus on treatments for conditions like lymphedema come into play.

“When we start looking at things like: Are your arms swollen after surgery or after radiation? What can we do to make sure that doesn’t happen?” he says. “One of the most feared side effects after all their treatment is: Can I use my arms? I have patients tell me they were told to never get on a plane again, or to not garden anymore. You can do all these things, but we should be watching and if you have symptoms, we need to treat them early.”

Chen wants to see more of a focus on watching for and treating those side effects early.

“Catching them early can change what happens to these patients,” says Chen. “It used to be, if it happens, ‘Well, at least you’re alive.’ But I tell people just like any other disease process, you never tell someone to wait until you have, for example, a heart attack, and then intervene. Why wait until someone’s arms are visibly swollen and it’s hard to treat them when we can detect it early and make sure it’s much less of a chronic problem?”

Early intervention is key

Lymphedema is swelling in the arms caused by damage to the lymphatic system.

“The lymphatic system is like a any other plumbing system. Once you start removing some of the valves and pipes, things can start backing up,” says Chen. “For a long time, we assumed whatever you do, this is what the patient is fated for, so a lot of people didn’t even ask about it. If it’s not bothering the patient, why ask? There was a concern about making the patient worry about something they couldn’t help.”

Figuring out how to proactively detect lymphedema was a challenge as well. One standard way to detect arm swelling is simply measuring the circumference of the arm. But this can be challenging to do consistently, and if you don’t have a baseline measurement before treatment it’s hard to know when something is different or wrong.

A BIS device passes a low-level electrical current through the body to determine how much fluid is in different limbs and offer a comparison.

“If you had surgery on the right side and now your right side is bigger than the left, for example,” says Chen.

Lymphedema can be alleviated through the use of compression sleeves.

“Wearing a sleeve even for a month or two can really change the trajectory when you start early enough. If you start developing long-term lymphedema, and if you catch it early enough, you have a better chance of avoiding chronic lymphedema. That’s why getting people into treatment early makes a difference,” says Chen.

The device offers a quick and straightforward test, though it is not always covered by all insurance. And while a single compression sleeve is not enormously expensive, cancer treatment often leaves patients unable to follow through on the treatment if insurance won’t cover it, especially if a patient needs sleeves life-long.

“The worst thing is knowing you have something wrong but can’t do anything about it,” says Chen.

Increasing awareness

Meanwhile, national guidelines such as the National Comprehensive Cancer Network (NCCN) have pushed for the adoption of this technique, measuring for lymphedema and, if it is available, to make use of BIS as a preferred option. Widespread use is still growing, however.

“It takes a number of years for things to percolate across the medical world,” says Chen. “People continue to practice medicine as they did 10, 20, 30 years ago as often as not.”

To get there, Chen explains, there needs to be increased awareness both of the testing option and the technology. Second is patient education.

“There are a ton of patient support groups where they can talk about making sure they get their arms measured,” says Chen. “We should make sure that every cancer center or cancer treatment group has a primary person who is going to pay attention to this.”

Communicating and coordinating care for patients after treatment is a place where improvements can be made, Chen says.

“One of the strengths of the American healthcare system is we have a lot of technology, but a weakness is we don’t always have coordinated care,” he says. “If I’m the surgeon, I operate on them, and then they are sent to an oncologist, and then they go on to further treatment. So who is in charge of making sure their arm is measured? Should it be in physical therapy or rehab? A lot of times it’s the surgeon who takes ownership and follows the patient, but it could be the oncologist or a nurse practitioner who is part of a survivorship program.”

As for ensuring awareness grows across the entire healthcare system, a lot of voices could take part, be it the organizations that establish guidelines, physicians, the patients themselves, or even quality officers who identify it as a quality metric.

BIS is just one of many ways in which the future is moving toward making survivorship better, Chen notes.

“We have seen an explosion of interest among both patients and physicians in what we used to call holistic medicine, or integrative medicine,” he says. “When we say the symptoms matter as much as the hard metrics. As we continue along this path, people will ask: what are we doing to make the patient’s life better?”

As patient empowerment progresses, physicians will need to be able to answer the questions their patients raise about their own conditions and treatments.

“Don’t be afraid to ask your doctor a question, and if they don’t have an answer, they should be willing to look into it,” says Chen. “Breast cancer treatment has become very individualized. We put a lot of the onus on the patient. Do you want reconstruction? Do you want chemo? There’s a lot of onus on the patient to manage their own care and getting them into the mode that they are an equal partner in their care journey. We want to get them out of the back seat and, if not driving the car, they get to program the GPS in their care journey.”

It’s a matter of wanting to ensure patients can thrive in their life expectancy and have every opportunity to live as if they didn’t have breast cancer. And part of that is thinking ahead.

“The minute you know you have cancer, you can set a new baseline and that’s an amazing gift for your future treatment,” says Chen.

Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at matthew.phillion@gmail.com.