Breast cancer pink balloons outside the Survivors & Friends Meet Up open house in Carfang's hometown, Evanston, IL.

Evanston native builds breast cancer survivor community

By Xiaoyi Liu
Medill Reports

Lauren Carfang remembers the shock when she was diagnosed with breast cancer at age 34.

“I think you are in disbelief a little bit, shock, anger, sadness, confusion,” said Carfang. “These are a lot of emotions that hit you, as you trying to make sense of what happened.”

Carfang underwent chemotherapy, surgery, radiation and hormone therapies after the diagnosis of breast cancer in September 2016. Now in remission, Carfang founded SurvivingBreastCancer.org as a platform to support survivors, their families and caregivers by navigating their uncertainty and the strong desire for connection, support, and resources.

The organization builds community with a blog, YouYube channel, podcast and monthly meetups at different locations across the country to engage people and make them feel supported.

Carfang, who grew up in Evanston, said that breast cancer survivors like her can be haunted by the fear of the disease returning – that’s why she started this organization to share her stories and empower other people who have been in the similar situation.

“We are constantly dealing with breast cancer on the inside,” she said, “I felt it was really important for others who are diagnosed with breast cancer to have a community.” Carfang juggles her role as executive director of the organization she founded with her position as associate director of graduate programs at Babson College in Wellesley, Massachusetts.

Kathy Conway met Carfang at the 2018 Living Beyond Breast Cancer Conference held in September in Philadelphia and spoke ato the Survivors & Friends Meet Up hosted by SurvivingBreastCancer.org in Evanston this month. She survived breast cancer after her diagnosis in 2009, and lived “flat” for a year after undergoing a bilateral mastectomy as a treatment.

“Sometimes I want to get dressed up, I want to wear jewelry, so I wanted the option of being able to wear prosthetics when I want to,” said Conway.

She tried to wear prosthetics but failed because all of them that she could find had heavy elastics that laid directly on top of the mastectomy scar, causing constant pain and irritation. She wasn’t able to pull them tight to hold up the prosthetics either because it would put her in a higher risk for lymphedema, a build-up of lymph fluid that causes swelling in the arms.

She heard the same complaints from other breast cancer survivors and decided to find a solution.

She designed a bilateral mastectomy apparel with soft, smooth fabric against the skin instead of tight band across the chest and scarred areas. With the ultra-lightweight breast prosthetics already sewn in, women who had a bilateral mastectomy without reconstruction can just put on the top and go.

 Kathy Conway
“I wanted to have the option to wear prosthetics, and since I couldn’t wear anything out there, we decided to do this,” said survivor Kathy Conway.(Xiaoyi Liu/Medill News Service)

“I had the problem, I figured it out for myself, and now we need to share it for other women that are having the same problems,” said Conway, who started Complete Shaping, L.L.C. last year to offer the all-in-one garments. “This has made an incredible difference in my life, and I know it can help other women boost their self-esteem and confidence, and ultimately contribute to better quality of life.”

Researchers are also working to find better ways to treat breast cancer and to improve the quality of patients’ lives.

“One of the area where we’ve made a great amount of progress is in the understanding of the genetic mechanism of how cancers develop, and the genetic makeup of the cancers,” said Dr. Claudia Tellez, medical oncologist and assistant professor at Northwestern University’s Feinberg School of Medicine. “When you have a good understanding of that process, you identify the weak spots in the cancers that then you can target with treatment. So today, a lot of our treatments are more targeted.”

The Oncotype DX test is one of these genomic technologies. It examines the activity of 21 genes in a patient’s breast tumor tissue to provide personalized information for tailoring treatment based on the biology of their individual disease. Oncotype DX test results assign a Recurrence Score that helps the physicians and patients interpret the results for early-stage invasive cancer.

“Based on that Oncotype score, we are able to determine if a patient needs to be treated with chemotherapy or not,” said Tellez. The benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects for patients with Recurrence Score lower than 18.

It had been unclear whether the benefits of chemotherapy outweigh the risks of side effects for patients with Recurrence Score of 18 up to and including 30.

New findings this year from the Trial Assigning Individualized Options for Treatment (Rx), or TAILORx trial, show no benefit from chemotherapy for 70 percent of women with the most common type of breast cancer, suggesting that treatment with chemotherapy and hormone therapy after surgery is not more beneficial than treatment with hormone therapy alone.

This study helps inform treatment decisions for many women with early-stage breast cancer. “What we found is that the majority of the patients that have an intermediate score Oncotype do not need chemotherapy,” said Tellez.

Improved treatment includes surgical techniques,  according to  Tellez. “Historically we used to do very big surgeries, and now we do smaller surgeries. We are doing least amount of surgery that results in removing the cancer and the lymph nodes that’s sufficient for each individual patient.”

“In 20 years that I have been doing this we have made a lot of progress. It’s been very exciting,” she said.

Photo at top: Breast cancer pink balloons outside the October Survivors & Friends Meet Up open house in Carfang’s hometown of Evanston. (Xiaoyi Liu/MEDILL)