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The journey of breast cancer survivorship

After months of chemotherapy and radiation, Susan Faber had finally finished breast cancer treatment and conquered the disease.

It should have been a happy occasion. But Faber felt at a loss earlier this year as she rang the gong at Johns Hopkins Hospital, a ritual all patients who finish cancer treatment at the facility take part in.

Suddenly a rush of emotions exploded from inside. Faber, 48, had been so preoccupied with treatment for her stage three cancer that she never really had a moment to truly think about the experience. As thoughts of her own mortality flashed through her mind she suddenly felt overwhelmed and anxious.

"On the last day of treatment I started crying and I couldn't figure out why," Faber said. "When you're getting chemotherapy you're taking steps to fight the cancer — you're doing something active. Then the treatment stops and you have an oh my god moment."

It's a feeling many breast cancer survivors experience, those who work with patients and survivors themselves said. Sometimes the months after care can be as trying as during treatment.

There was a time when women had few places to turn as they grappled with living as a breast cancer survivor. The issue of survivorship — defined from the time of diagnosis and for the balance of life — only began to take hold in the late 1980s.

It has slowly gained momentum as health care providers realize that that treatment doesn't stop with the final chemotherapy or radiation session. Hospitals and cancer centers have slowly adopted survivorship programs and other support services to help patients deal with the physical and emotional hurdles of returning to normalcy.

"We were doing a good job of caring for patients and getting them better, but not with the follow-up," said Elissa Bantug, who was brought on three years ago as project coordinator for the survivorship program at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center.

Life after breast cancer doesn't return to life before, breast cancer survivors and medical specialists said.

Women have to grapple with changes in their physical appearance and deal with fears of getting the disease again. The side effects from chemotherapy may last for months. Some get "chemo brain" where they suffer with bouts of memory loss, while others struggle with episodes of fatigue. There are issues of low libido and infertility.

And there are lifelong doctor appointments and routine mammograms because breast cancer can return or lead to other cancers.

"Once you have that big C stapled on your forehead it is hard to get over it," said Anne McNerney, a breast cancer survivor who serves as a patient navigator at the University of Maryland Greenebaum Cancer Center. "Your greatest fear is somebody is going to rob you of that joy."

The Greenebaum Center has support groups and is looking to offer yoga and guided imagery breathing classes to help survivors cope with anxiety.

At the Kimmel Center, Bantug and the rest of the staff help make sure patients schedule follow-up appointments with a primary care physician when treatment is completed. They coordinate appointments with nutritionists and psychologists and refer patients to yoga classes and support groups. A nurse practitioner talks to each patient about the side effects they might continue to experience.

Bantug is a two-time breast cancer survivor who was first diagnosed at age 23. She marked off a day in the calendar after each treatment and thought she'd rejoice the day she never had to see her oncologist again.

"I was looking forward to not being a sick patient anymore," she said.

When treatment was finally over in 2005 she looked at her doctor: "What now?" she asked.

"Have a nice life," he said.

Instead she fell into a deep depression and suffered from bouts of fatigue where even grocery shopping tired her out. Chemo brain set in and she couldn't remember the names of people she'd known for years. She worried constantly about getting cancer again.

"Every time I got a headache I thought the cancer had come back," Bantug, now 30, said. "Every cough made me think it had spread to my lungs."

Bantug dealt with the changes by reexamining priorities in her life. She focused on adopting a healthy lifestyle and found a support group, Breast Friends, where she and other women her age shared their experiences with each other. She also saw a psychologist for a short while.

"It helped to hear that I was not crazy and allowed me to flush out some of the many complicated feelings I was experiencing," she said.

Many patients also find out they become dependent on their the nurses, doctors and radiologists who treat them. Losing that support blanket when treatment is over can be a shock.

"My whole treatment team had become like second family to me," said Renee Heatwole, 29, who recently finished treatment for Stage 1 breast cancer. "Just realizing I wasn't going to see them anymore on a regular basis was definitely hard for me."

Heatwole discovered a lump in her breast while doing a self-exam last year. Because of her age and the small size of the lump, doctors weren't too concerned.

"Until the day I was diagnosed, everything I heard from the doctor was you're going to be fine, we want to check to be safe," Heatwole said.

When the doctor called to say the tumor was malignant, Heatwole's mouth moved faster than her brain.

"I went Yay! … What did you say?" Heatwole said.

Heatwole, whose once curly, chestnut-colored hair has grown back straight and blonde is dealing with her anxiety through a strong support group of friends and family. She will soon go on a cruise to celebrate her recovery and has just begun training for the Disney Half-Marathon in Florida.

Some patients never experience the post-recovery doom and gloom feelings.

Nina Rawlings discovered a lump in her breast while visiting her daughter, Baltimore Mayor Stephanie Rawlings Blake, at Oberlin College in 1991. Rawlings felt tenderness in her breast she thought came from sleeping in a hard dorm room bed. Her daughter felt the spot and said it was a lump.

Rawlings went to the doctor after returning to Baltimore and was diagnosed with Stage 2 breast cancer at age 55. Rawlings kept working as a pediatrician through her treatment, which included chemotherapy, radiation and a mastectomy.

When treatment was over, she didn't dwell about whether the cancer would reoccur. She was happy to be alive. And she didn't worry about her new appearance either. The only thing she wanted was to have some hair when her daughter graduated that May.

"I didn't think that much of my body," said Rawlings, now 75. "I didn't think I was a royal beauty or anything. Once you put your clothes on who knows what is underneath them."

Rawlings does think support groups are good for those who are having a hard time with life after cancer treatment. She also said she still sees too many women ignore symptoms and then aren't diagnosed early enough and education should continue on that front.

Many women are turning to exercise to help with survivorship issues.

Jennifer Tisch, 38, ran a marathon after finishing treatment for Stage 1 breast cancer in 2005.

"I wanted to do something extreme," she said.

When the cancer returned in 2007, the graphic designer and web developer from Bel Air shut down for awhile. She worried that she wouldn't be around for her twin boys. But once again exercise, along with support groups, helped get her back on track.

This time it was bike riding. She rode in the Sea Gull Century race last year. She recently rode 40 miles with two friends in the Greater Maryland Bike4Breast Cancer Ride, which raises money for cancer survivors.

"This is my second comeback," she said.

Tips for breast cancer survivors

•Join a support group with other survivors such as Breast Friends or one at your hospital

•Maintain follow-up appointments

•Start a physical fitness routine

•Eat right

•Do yoga or Pilates for anxiety

•Don't be a afraid to talk to a psychologist

•Form your own support network of family and friends