Life after treatment

Leslie (Vietmeier) Heron, a nurse practitioner with the Fred Hutchinson Cancer Research Center Survivorship Program, told me that shame, anger, grief, fear, PTSD and feelings of “otherness” are common for many cancer survivors.

“I hear all of those things from patients and sometimes almost all at once,” she said, explaining how survivorship programs are trying to help people come to terms with all kinds of cancer-wrought changes, from the logistics of living with amputated body parts to treatment side effects such as hair loss, lymphedema and fatigue to emotional issues like depression, fear of recurrence and anxiety.

“In survivorship, we’re trying to normalize the experience of cancer survivors,” she said. “We’re saying you’re not alone feeling that your body isn’t your own any more or you’re having problems coping.”

According to Heron, many patients hesitate to bring up emotional issues with their oncologists. Their oncologists, in turn, may not know how to handle them so don’t always ask. As a result, appointments tend to be about scans and symptoms as opposed to murkier topics like sexual dysfunction or feelings of disassociation or betrayal.

“Oncology visits tend to be problem-focused,” she said. “Saying, ‘I feel kind of blue’ or ‘What about getting back to sex?’ may feel like trivial topics compared to ‘What does my lung scan look like?’ And I think patients are also so grateful that they’re alive that it almost seems disrespectful to say, ‘By the way, I’m really depressed.’”

Survivorship studies bear this out. According to a 2010 Livestrong report, 62 to 80 percent of cancer survivors have concerns about their personal appearance, grapple with grief and identity issues and worry about their cancer coming back. Only a quarter to a third get any kind of help for these issues.

But as both survivors and survivorship studies have found, concerns over body image, depression, anxiety and sexuality need to be addressed, if not with an oncologist then with a primary care physician or other health care provider.

That’s the aim of the Survivorship Program. Heron and colleagues meet with patients to create Survivorship Care Plans, referring them on to physical therapists, mental health counselors, social workers and others who can help sort out the emotional and physical aftermath of treatment.

And there is an aftermath.

Most people know about immediate side effects of chemo and radiation (think hair loss, nausea, mouth sores, burns and fatigue). But months or even years after the treatment dust has settled, many survivors also have to contend with late-term side effects such as bone-density loss, neuropathy, cognitive issues (aka “chemo brain”), heart and/or lung damage or even another cancer.

According to the American Cancer Society, one in four survivors — and keep in mind there are 14.5 million of us in the U.S. alone — has experienced decreased quality of life due to these physical problems— problems brought on not by the cancer, but by treatment. One in 10 has experienced decreased quality of life because of emotional issues such as anxiety, depression and fear of recurrence.

Parsing the new normal

What advice did Heron have for those of us trying to navigate this fraught “new normal”?

It depends on the individual, she said, but a good place to start is with healthy coping mechanisms that have worked in the past.

Writing and exercise definitely helped me get through my rough patches (trash-talking cancer was another favorite pastime). I started a blog shortly after I was diagnosed and joined a boxing gym six months after treatment. The reconstruction surgeries put a kibosh on the boxing — at least for the time being — but I still keep my hand in with a little lifting and running and a ton of walking. I feel better when I exercise. I feel stronger, both physically and emotionally.

Heron said many survivors do.

“Regular exercise helps you build strength, endurance and body confidence, and it’s a great way to overcome fatigue,” she said, pointing to survivorship programs like Exercise and Thrive/Livestrong at the YMCA and Team Survivor Northwest.

Humor is also a great way of coping, she told me, as is getting involved in support groups — although she emphasized they don’t have to be cancer groups.

“It might be a hiking group that you used to be part of or even volunteering at your kids’ school,” she said. “It’s just good to get back out into a community of people, even if it’s not specifically a cancer community. One of the things that happens around body image is self-isolation, and that can lead to more depression and less self-care.”

Reconstruction, she said, helps many breast cancer survivors feel more like themselves — as it has with me, at last. But others do just fine without it. Another helpful tactic: Seeking out stories of other survivors — whether in books, in person or online.

“It can offer a change of perspective,” she said. “And it also lets you see how others have coped and moved forward.”

‘Every scar tells a story’

Sweet and self-effacing, Maria Thacker is a 27-year-old nurse from Port Angeles, Washington. Since being diagnosed in 2010, she has undergone multiple wide-tissue excisions for her persistent malignant melanoma. She’s also a soon-to-be bride both proud of her cancer survivorship and self-conscious of the scars left in its wake.