It’s no surprise that breast cancer can turn a person’s life upside down. But what’s often overlooked are the challenges that take place after someone is treated or cured.
Health care providers are beginning to focus on the physical, emotional and psychological impacts of the disease so they can better understand how to support survivors throughout the rest of their lives.
“Survivorship has come a long way in last 10 years, but it’s still in its infancy in terms of where it can go across the board,” says Jacquelyn Glenn, a breast cancer coordinator at Novant Health UVA Health System.
When Gail Stamm, 64, was diagnosed with cancer in her right breast more than six years ago, she was left wondering what caused the disease in the first place—and how she could prevent it from coming back.
“My thought was, ‘What can I do to gain control?’” says Stamm, a former West Springfield resident who has since retired to South Carolina.
For Stamm, that meant revamping her diet with a focus on organic produce and meats.
“I became more fixated on trying to eat healthy and eliminate bad stuff because I did not know where this thing came from, and I didn’t want to repeat it,” she says.
Such concerns are common and can take many forms, says Julie Pierce, a breast health navigator at Virginia Hospital Center, where Stamm was treated back in 2010.
While treatment itself can, of course, be unpleasant—even downright painful at times—patients often develop a routine and rapport with their doctors and nurses. Losing those connections once the disease is gone can be jarring.
“When you’re done with treatment, patients can feel abandoned. Their fear still exists. Did the treatment work? How do I manage these fears of recurrence?” Pierce says. “So that’s why in survivorship, you want to give them a plan and make sure they have the resources they need to transition into their full survivorship phase.”
Virginia Hospital Center offers a growing number of supports for breast cancer survivors, including access to a limited number of free counseling sessions, classes in everything from nutrition to yoga and even a book club, launched this summer. The hospital is also organizing a “transitions” course that will acquaint cancer survivors with some of the issues they might encounter and the resources available to help.
Other local medical centers, including Novant, Inova Health System, Sentara Healthcare and Johns Hopkins Medicine, provide a similar range of offerings—everything from art therapy to cooking demonstrations to support groups for patients and families. Representatives for all of the hospitals say that there’s an increased focus on helping breast cancer patients take back their lives.
That effort grows more critical every day as the number of survivors expands. Thanks to advances in treatment, the death rate from breast cancer fell 36 percent between 1989 and 2012. The average five-year survival rate for all people with breast cancer is 89 percent, according to the American Cancer Society, while those with early-stage, localized cancers have a five-year survival rate of 99 percent. There are currently more than 3 million breast cancer survivors in the United States, most of whom are women—men account for about 1 percent of all breast cancer cases in the U.S.
Just over a decade ago, the Institute of Medicine (now called the National Academy of Medicine) published a groundbreaking report, “From Cancer Patient to Cancer Survivor: Lost in Transition,” that explored the state of support for survivors and where those efforts fell short.
The report called for the creation of “survivorship plans” for patients to detail their ongoing care after treatment is completed—a practice that is becoming more common. The plans can include everything from a summary of the patient’s medical history to schedules for future cancer screenings to resources for staying healthy emotionally and physically going forward.
While there’s still more work to be done, increased attention on survivorship issues can help provide patients with a vital lifeline.
Elissa Bantug says she struggled with feelings of disorientation and anxiety after first being treated for breast cancer in 2003, when she was just 23 years old. She didn’t feel like she had been given the tools she needed to move forward with her life.
“My doctors did a really good job of removing the disease but not necessarily a good job of getting me well,” she says. “I remember being so powerless by the lack of knowledge.”
Those feelings have helped inspire her own work at Johns Hopkins, where she directs many of the cancer center’s breast cancer survivorship programs.
At Hopkins, support for survivors has even gone digital. Online webinars now reach a global audience of people who are struggling with similar fears, problems and questions in far-flung locations like the Middle East and China.
“We joked when I suggested this idea that if we have 10 people join it will be surprising. And within the first three or four days of us starting the first seminar, 500 people signed up and we were at capacity. It shows that there’s a huge unmet need,” Bantug says of the launch of the webinar series in 2012.
One of the biggest hurdles women face when they leave treatment is the pressure that comes with returning to everyday life—the expectation, perhaps from family, friends, coworkers or even the patients themselves—that things should return to “normal.”
“I’ve heard spouses say, ‘I can’t wait for things to go back to normal,’” says Glenn. “And the patient bursts into tears because we’re not going back to normal. We’re going back to a new normal. Things are going to work differently now that she’s been through this very emotional and psychological event.”
The added stress that comes with facing the disease can also spur conflict within a family, something hospital programs can potentially help address by offering support groups and counseling.
“I’m not just a surgeon; I’m responsible for treating the entire family,” says Negar Golesorkhi, a breast surgical oncologist at Sentara. “When I notice tension, when I see the husband who used to come to every single meeting is no longer there, I do ask, ‘How is everything going?’”
If there’s a problem, Golesorkhi can refer patients and families to the available resources at the hospital.
Meanwhile, physical changes brought on by breast cancer—everything from removal of one or both breasts to shifts in the sensation or appearance of the breast—can create new challenges related to body image and self-esteem.
“When you are diagnosed with breast cancer, there are tremendous losses related to physical changes,” says Sage Bolte, director of Inova’s Life with Cancer program. “Body image is a component of a lot of what we do here, helping people redefine and reclaim their bodies, regardless of how it’s changed.”
Medical professionals are now increasingly equipped to talk with patients about the impact of treatment on their sexual health and concerns about long-term fertility. The physical consequences can be particularly acute for women who are drawn into medically-induced menopause at a young age as part of stopping the disease.
“We’ll do support and a lot of knowledge-building around how you manage the long-term sexual health implications of your diagnosis so you can be sexually satisfied, so you can still feel sexual, so you can still feel connected to yourself or your partner,” Bolte says.
Certain procedures and medications taken during treatment can also have long-lasting effects when it comes to fatigue and mental acuity, sometimes referred to as “chemo brain.” These days, there’s more understanding about those problems and resources for working around any limitations.
“I would forget people’s names, phone numbers. I really had a hard time,” Bantug says. “My doctor kept saying you’re stressed, or you’re not sleeping well. But there’s data to show now that there can be a cognitive decline; most of it is temporary, though not all of it, not all of the time. Just to validate that is huge and to know that there are strategies for managing it.”
At the same time, patients can find that their bank accounts can become a source of stress. Medical debt can be a major challenge for some and may trigger anxiety and depression in its own right.
“One of the things that hardly ever gets addressed is that when your care is done, there’s a mountain of debt to go along with that, and that in itself can be very depressing,” says Glenn. “If you have great insurance and it covers 80 percent of your care, that is wonderful, but 20 percent of $100,000 is still a lot of money.”
One 2013 study from Duke University found that women with breast cancer often ended up spending more than $700 per month out-of-pocket on prescriptions, co-pays and travel during treatment beyond what insurance might cover.
oming out of a fight with breast cancer can also impact a patient’s approach to diet and exercise. It’s generally recommended that cancer survivors follow standard nutritional guidelines and try to stay active.
Stamm says she struggled with juggling an improved diet after she returned to work, where she served as an executive assistant to the head of a technology company in Tysons Corner. “I was finding it very difficult to manage my job with long hours and the commute and be able to prepare things that were healthy. I didn’t want to get back into eating out a lot.”
She ultimately hired Victoria Cortes, a personal chef, to ensure she had access to healthy, fresh food despite her frantic schedule. Cortes found substitutes for problematic foods—snacks containing soy, for example—that Stamm was looking to avoid.
“Victoria was a godsend,” she says.
For her part, Cortes says she enjoys that her work as a personal chef helps cancer survivors put their plans into action—acting on instructions they’ve received from a doctor, nutritionist or their own research—and helps them reduce stress. She does the grocery shopping in addition to meal preparation. “I’m told I make vegetables fun again,” she says.
Deborah Jeffery, a licensed and registered dietitian nutritionist with offices in Reston and Arlington, adds that weight management is particularly important for cancer survivors because being overweight can increase odds of recurrence, not to mention lead to other problems like heart disease or diabetes. But just like everybody else, sticking to a healthy diet can be a struggle for some who have survived cancer.
“It’s difficult for the general population,” to maintain a healthy weight, says Jeffery. “For this population, the added stress of knowing the additional weight for them can be a health risk, that compounds it a little bit in trying to keep their weight normal.”
Breast cancer survivors can also face specific challenges when it comes to exercise. Studies show that moderate activity, including weight-bearing workouts, is important for overall health. But those who have battled cancer must be careful to watch for signs of lymphedema, a type of swelling that can occur in the arms and legs when lymph nodes are removed or damaged during treatment.
“They may worry about movements in their arm and causing lymphedema, which is another side effect that many women live with,” Bolte says. “It’s their daily reminder of their diagnosis, which can be really frustrating for some.”
The University of Pennsylvania conducted a landmark study several years ago called the Physical Activity and Lymphedema trial, which examined the impact of moderate, progressive weight lifting for women with breast cancer, including those at risk for lymphedema and those who already had it. Both groups benefitted from the controlled work to improve their strength. The findings reversed a long-held belief that breast cancer survivors should severely restrict upper-body movement with an affected arm. Given the risks that can come with lymphedema, experts say it’s important to find a certified physical therapist who is familiar with the specific risks to cancer patients.
“We proved that in fact, the right kind of strength training is much better for a breast cancer survivor than no training at all; it was pretty emphatic,” says Cathy Bryan, the lead personal trainer in the UPenn study. She now runs her own practice working with survivors in Seaford, Delaware, and trains other physical therapists in best practices for working with those who have been treated for breast cancer.
Cheryl Guarna, owner of Oncology Rehab and Wellness in Ashburn, has also adopted the PAL trial protocol. Her program generally includes exercises to improve shoulder range of motion and a very gradual weight-training regimen.
Guarna adds that her practice has begun working with doctors prior to a patient’s surgery to help better train breast cancer survivors after the operation.
“This is a very essential piece,” she says. “Having clear presurgical baselines of shoulder function, strength, range of motion and postural issues enables a more customized postsurgical plan.”
Of course, despite some commonalities, health providers know that patient experiences will vary both during and after the treatment process for breast cancer. Women will have to endure different procedures depending on their diagnosis, and even differences like age can influence the kinds of issues a survivor will face.
“A younger woman diagnosed in her early 40s, a mom of younger kids, is immediately looking at her mortality in a very different way than an older woman might be, even if it’s early stage,” Bolte says. “A young adult woman is also looking at 30 years of follow-ups, and women put in early menopause have that many more years of figuring out what their body needs to do to adjust.”
Still there’s one thing Stamm has learned as the years pass: It gets easier.
“The further you get away from the event, I think the better you feel and the more comfortable you feel,” she says. “There are days, weeks, months now that go by and I don’t even think about it. And that’s a good thing.”