Why life after beating cancer can be the hardest stage of the disease

October 12, 2015

For some cancer patients, the time after treatment ends can be the toughest.

Stephanie Logan still remembers the moment her doctor told her she was done — done with four rounds of chemotherapy, done with seeing nurses more than friends, done with regular pokes and prods.

She remembers thinking, "What am I supposed to do now?"

"You’re kind of thrown in the deep end," the 51-year-old hairstylist said.

The moment of "surviving" breast cancer should be joyous, triumphant. But for many, the time after treatment is a stage of uncertainty physically, mentally and socially. And as cancer treatment options improve and abound, some say resources for helping patients after they leave the hospital have not caught up.

Issues range from anxiety around checkups to pressure to find meaning in every moment. Breast cancer brings unique challenges as well, like dating after a mastectomy. "Chemo brain" and persistent fatigue interrupt work. Vaginal dryness and scarred bodies take a toll on libido.

"People think that you have cancer, you’re battling cancer, then you finish cancer and then, ‘OK, now, next?’" said Hector Nunez, chief operations officer at cancer support group Imerman Angels. "It’s not that easy."

More help is emerging in the medical community. New York City’s Memorial Sloan Kettering’s Cancer Center offers Living Beyond Breast Cancer resources. In Richmond, Va., the Massey Cancer Center at Virginia Commonwealth University includes a survivor health center.

For many, the battle while sick is demanding but distracting. The impact can hit later, experts say.

"I often see a lot of my patients get depression, not really around the diagnosis so much or the treatment; it’s about a year after," said Dr. Jennifer Litton, associate professor at the University of Texas’ M.D. Anderson Cancer Center in Houston.

This year, Oxford’s Journal of the National Cancer Institute published a paper outlining concerns that, despite improvements in treatment, resources for survivorship have fallen behind.

Beginning in January, new mandates from the American College of Surgeons’ Commission on Cancer require that patients leave primary treatment with survivorship care plans. Doctors should discuss side effects, the group suggested, as well as resources for emotional or mental issues.

"People were getting to the end of treatment and kind of being cut loose," said Dr. Timothy Pearman, a psychologist and director of supportive oncology at Northwestern University’s Robert H. Lurie Comprehensive Cancer Center in Chicago.

Experts advise that survivors allow space and grace on a roller coaster that, instead of coming to a screeching halt after the last appointment, might continue on for a loop or two.

Pearman often sees patients recovering — and reeling — from breast cancer.

"I think it’s really hard for a lot of women to not be hard on themselves and say, ‘What is wrong with me? Why am I not back to normal?’" he said.

Support, through a therapist or a group like Imerman Angels, which offers mentors to survivors, patients and caregivers, is key, experts said.

"You’re never the same," Logan tells the women who call her at the phone number she freely dispenses. "You’re not the same person. It’s OK to have a new normal."

Nunez understands. He harbors memories of his mother, after her mastectomy, feeling less of a woman. And he himself beat throat cancer only to realize radiation burns blocked his return to exercise. Meanwhile, side effects landed him in the hospital twice.

"I did not know," he said, "the surviving was going to be the hardest."

A weight-lifting mentor helped him return to the gym and life. He’s running the New York City Marathon in November.

Breast cancer takes a unique toll, doctors say.

"Many women remain plagued by a plethora of physical, functional, emotional, financial, and social challenges," the Journal of the National Cancer Institute authors wrote.

Physical changes can be big and small. Nails and toenails can turn dark, hair growth can be slow, radiation can leave temporary burns on the skin.

Logan calls the physical toll a "blow to your confidence and self-esteem." Through the Look Good Feel Better program, she gives women tips — wig options, makeup for fatigued faces.

"You have your self-confidence issues," Logan said. "‘Am I still attractive; will he still like me, still love me?’"

Relationships also factor into a new normal. Friends might have fallen away, unsure how to help, or partnerships acquire a new rhythm.

And sexually, no other cancer has an impact quite like breast cancer, doctors said. Mastectomies can alter intimacy as women adapt to their new bodies. Treatment can throw women into early menopause.

"Everyone ties their sexuality to their breasts in different ways," said Litton, who often refers patients to a sexuality clinic within M.D. Anderson.

Pearman’s patients wrestle with dating. One young woman didn’t feel ready, because she was still bald. He often sees couples together: A wife might work through a new image in the mirror; a spouse’s respectful distance might be construed as disinterest.

"I think with a lot of cancers, there’s not that same sense of this being so tied to your gender and your body image," Pearman said.

On a mental level, patients — far from being thrilled to exit hospital doors — feel an added anxiety away from doctors.

Pearman’s patients are often perplexed to no longer be constantly monitored. One worried her cancer would reappear undetected.

"She said she felt like she’d been walking this tightrope, and all of a sudden she got to the end of treatment, and she was still walking the tightrope, but the safety net got taken out," he said.

Right before her last appointment, Sharon Martin, 57, a middle school teacher in Campbell, Calif., recalls asking her doctor, "Can’t I keep doing chemo? Just once a month?"

"It was like this comfort zone," she said. "As long as I was having chemo, even though it stripped me of every hair on my body, I felt like I was safe."

She added, "The 12 months following your treatment can be really terrifying."

Doctors try to balance watchfulness with the all-too-easy slip into obsession.

"Every twinge is going to be cancer in someone’s brain," Litton said.

Her patients, after walking through a waiting room of still-sick patients, are hesitant to share negative thoughts.

"People tell me they feel like they’re being wimpy or whiny when they’re being bothered about these things when they should be grateful (to be alive)," Litton said.

Each patient moves forward at her own pace. Some prefer to leave breast cancer completely behind, opting out of support groups. Others find solace in them. Routine checkups on one person’s calendar might be occasion to take a day off from work, but others treat it like any other errand.

Logan, whose sunny attitude is echoed by arm bracelets reading "Turn Up Your Praise" and "Keep Pushing," found purpose through volunteering with Imerman Angels and starting the Empower Many Network, a social-gathering group of survivors.

Also a travel agent, she hopes to launch Survivor Retreats. A cruise to Jamaica and Mexico with friends capping her treatment helped her regain a sense of self, she said.

Chicagoan Phyllis Maciulis, diagnosed twice 20 years apart, refuses to feel fear constantly.

After her first diagnosis, every small change — a dentist’s raised eyebrow, an abnormality on an arm — immediately transformed into a cancer scare. Each time, it was fine, until it wasn’t, she said.

"I’m not looking for cancer," said Maciulis, 68, who also keeps a wry humor at the ready. "I already had a taste of being under a microscope. It was horrible."

Since she first battled breast cancer two decades ago, much has changed. The first time, she asked her doctor for resources. He responded, she recalled, that he would be her sole resource for any questions.

"I was flabbergasted by that," she said. "It’s really a lot different now."



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