cancer patients, the time after treatment ends can be the
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
remembers thinking, "What am I supposed to do now?"
kind of thrown in the deep end," the 51-year-old
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.
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.
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."
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.
many, the battle while sick is demanding but distracting. The
impact can hit later, experts say.
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.
year, Oxford’s Journal of the National Cancer Institute
published a paper outlining concerns that, despite
improvements in treatment, resources for survivorship have
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.
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.
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.
often sees patients recovering — and reeling — from breast
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.
through a therapist or a group like Imerman Angels, which
offers mentors to survivors, patients and caregivers, is key,
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."
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
did not know," he said, "the surviving was going to
be the hardest."
weight-lifting mentor helped him return to the gym and life.
He’s running the New York City Marathon in November.
cancer takes a unique toll, doctors say.
women remain plagued by a plethora of physical, functional,
emotional, financial, and social challenges," the Journal
of the National Cancer Institute authors wrote.
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.
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
have your self-confidence issues," Logan said. "‘Am
I still attractive; will he still like me, still love me?’"
also factor into a new normal. Friends might have fallen away,
unsure how to help, or partnerships acquire a new rhythm.
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
ties their sexuality to their breasts in different ways,"
said Litton, who often refers patients to a sexuality clinic
within M.D. Anderson.
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
think with a lot of cancers, there’s not that same sense of
this being so tied to your gender and your body image,"
mental level, patients — far from being thrilled to exit
hospital doors — feel an added anxiety away from doctors.
patients are often perplexed to no longer be constantly
monitored. One worried her cancer would reappear undetected.
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.
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?"
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."
added, "The 12 months following your treatment can be
try to balance watchfulness with the all-too-easy slip into
twinge is going to be cancer in someone’s brain,"
patients, after walking through a waiting room of still-sick
patients, are hesitant to share negative thoughts.
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.
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.
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
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.
Phyllis Maciulis, diagnosed twice 20 years apart, refuses to
feel fear constantly.
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.
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."
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.
was flabbergasted by that," she said. "It’s really
a lot different now."