Navigating for Herself and Others: Sarah Iwanski

That skill has served her well since early 2013, shortly after her second child was born. Sarah, who has a genetic blood disorder known as hereditary hemorrhagic telangiectasia, or HHT, was sent for a chest scan. Her doctors wanted to make sure the pregnancy hadn’t caused HHT-related lung problems.

The test showed her lungs were fine. The radiologist noted one lymph node was barely enlarged and told her it was nothing to worry about. Sarah, who was 29 and breast-feeding an infant, then went to her obstetrician/gynecologist. She was sent for an ultrasound that found the node was probably benign.

Still, Sarah was not satisfied. Because she was a medical technologist at a local hospital, she consulted an oncologist she knew. He didn’t think the node was a problem, either, but agreed to send her for a biopsy. It showed what no doctor had detected: Sarah had stage IIIA breast cancer. The disease was in her milk ducts but hadn’t formed a tumor that could be felt, especially in a nursing mother’s breast.

“If I [had not questioned] my healthcare providers and advocate[d] for myself, then I probably would not be alive now,” says Sarah. “I have a medical background and worked in a hospital. Women without that experience and without confidence to challenge their doctors are at a severe disadvantage.”

Joining clinical trials

Sarah was diagnosed with hormone receptor-negative, HER2-positive breast cancer. She had a mastectomy, chemotherapy, trastuzumab (Herceptin) for a year and 30 rounds of radiation. She also set out to find clinical trials for further treatment because there are no long-term treatments for the type of disease she has. “The more clinical trials I can find, the more [I feel] I’m actively doing [something] to stick around,” she says.

She thought a vaccine therapy trial could benefit her, so searched online at breastcancertrials.org and clinicaltrials.org.

Vaccine therapies are treatments that stimulate the immune system to destroy cancer cells.

After finishing trastuzumab and radiation, and while undergoing reconstructive surgeries, Sarah joined a trial for a vaccine that might work against HER2. The trial site was in Virginia, an 8-hour drive from her home. She made the trip for an initial exam and then 12 more times over a 3-month period, to receive the vaccine.

Because it was a phase 1 clinical trial, everyone in it received the vaccine. The treatment ingredients had been separately tested through phase 3 trials. Each time she got the vaccine “it made me feel like I had the flu for a day,” she says. The trial has not yet reported results.

The trial covered costs for the vaccine and related lab work. Her final visit was not covered, and was out-of-network for her insurance, so she paid about $1,000-$1,500 for that. She had help with hotel expenses from an American Cancer Society program.

She participated in other clinical trials as well. Earlier, while receiving trastuzumab, Sarah was in a study testing heart medicine in women taking trastuzumab, which may cause heart problems. Neither she nor the researchers know whether she received a medicine or placebo, an inactive substance. “I will never know until years from now what I got, but I didn’t have heart damage (from treatment),” Sarah says.

She and her family also participated in a study of genetic factors related to breast cancer in women younger than 40 when diagnosed. The study, which is still open, collects blood samples from young women living anywhere in the U.S., as well as from their siblings and parents.

Helping other Georgia women

Sarah has lymphedema from surgery, range-of-motion problems from radiation scarring and neuropathy from chemotherapy. Spurred by her squeaky-wheel nature and her own experiences, she became passionate about survivorship concerns.

She felt support was missing outside of hospital networks in Georgia and met other survivors who agreed with her. “We needed an outlet to not sit in a hospital and talk about being sick, but to have fun with women who understood what we were experiencing,” she says.

With a few other women, she co-founded Surviving Sisters, a nonprofit focused on nine underserved counties in coastal Georgia. The organization has peer navigators, a website with a directory of support resources and a private Facebook group. The group works with rural hospitals to connect survivors with services and holds social activities, such as picnics, beach days and retreats.

Because of her ongoing side effects and medical needs, Sarah could not return to her previous job and receives disability benefits. She became a certified patient navigator and volunteers helping others get through breast cancer treatment. She also serves as treasurer of Surviving Sisters.

“I loved my old job, but I look at it as breast cancer was for a reason. There has to be something I can do with it,” she says. “Survivorship is a big need."