Emily Helck was 28, and fresh off a writing residency in Rome, when she was diagnosed with breast cancer. After she completed treatment, which consisted of surgery, chemotherapy, radiation, and Herceptin, and was cancer free, she began to explore emerging immunotherapies as a way to prevent recurrence. She found a clinical trial for two vaccines that target the HER2 protein—GP2 and AE37. Now, she is at the Cancer Research Institute (CRI), where she is the community manager of TheAnswerToCancer.org, a patient and caregiver website for those interested in cancer immunotherapy.
CRI: What went through your mind when you heard the diagnosis?
Emily: When my doctor told me that the biopsy revealed cancer, my initial feeling was anger. Three years prior, my boyfriend (now husband) had non-Hodgkin lymphoma. He was 27. We couldn’t both get cancer in our 20s. What were the odds?
CRI: What was the next step?
Emily: After the tumult of the diagnosis, there’s also a strange amount of relief. I hate uncertainty, and the weeks of testing were very difficult. Once I knew, we could make a plan. I had lots of consults with doctors at Beth Israel, where I was treated, and Dana-Farber Cancer Institute, to figure out what course we would take. I started with a bilateral mastectomy; my family history of breast cancer is strong enough that it made sense to me. After that, we settled on a new protocol being studied—twelve weeks of Taxol, with Herceptin for a year. After Taxol, I did radiation. When radiation was complete, I began researching to find out what else I could do after finishing Herceptin.
CRI: How did you find out about immunotherapy?
Emily: My medical team told me about Herceptin right away. As that treatment was winding down, I heard about the NeuVax trial, which is testing a vaccine to prevent recurrence. I couldn’t get into that trial, but the idea of a vaccine was really interesting to me.
CRI: Which clinical trial did you enroll in?
Emily: I found a phase II trial for a vaccine to prevent recurrence of HER2 positive breast cancer. After speaking with the trial coordinator, I knew I wanted to be a part of it. It would mean traveling from my home in Jersey City to Washington, D.C., every three weeks for half a year. It would mean missing work, and fun stuff, and it would be expensive, but I didn’t care. The injections themselves were no big deal—the side effects were on par with the flu shot. And I felt very proud that I was participating in the process of finding a new treatment.
CRI: Did your experience with cancer change you?
Emily: Cancer has undoubtedly changed me. It’s part of my identity now, as much as the fact that I grew up in New Jersey, or that I was born in 1984. It’s not good or bad; it just is. I have met some of the most incredible people, and made lifelong friends. I’ve also lost some wonderful people—old friends who couldn’t cope, and new friends who have passed away.
The vaccine trial has been important, too. It’s actually changed the way I think about my immune system, and made me feel more empowered in my own survivorship. For most of cancer treatment, things are just being done to you; there’s very little a patient can do to get well from cancer on her own. With immunotherapy, I feel like every day I’m doing something to stay healthy in a very concrete way. I have a new respect for what my body can accomplish. And that is so important after cancer.
My goals as community manager are fairly simple: I want to help patients interested in immunotherapy connect not only with each other, but also with patients who’ve undergone immunotherapies.
CRI: What were your past experiences with cancer?
Emily: There’s been a lot of cancer in my family, unfortunately. Two of my grandparents died from it, an aunt, and one of my cousins. Two other aunts also had breast cancer. My most intense experience was during my husband’s treatment for lymphoma, because I was his caregiver. I was 24. Most of the time, we would be the only people in the waiting rooms who didn’t have grey hair. I learned a lot during his treatment, we both did. And those lessons proved important during my treatment three years later.
CRI: Tell us about your role with CRI’s website for patients and caregivers, TheAnswerToCancer.org?
Emily: My position as community manager for TheAnswerToCancer.org is one I’m honored to hold. The ability to interact with patients in a meaningful way, and even help steer them to the latest treatment options, is incredibly meaningful, and I take it very seriously. I feel—with the patients I’m meeting and with the staff at Cancer Research Institute—that I’ve found my people.
CRI: What do you hope to accomplish?
Emily: My goals as community manager are fairly simple: I want to help patients interested in immunotherapy connect not only with each other, but also with patients who’ve undergone immunotherapies—we call these our Advocates. Advocates can speak to the unique and new process of being treated with emerging immunotherapies, and participating in clinical trials—lighting the road ahead for newer patients. During my own treatment, interacting with patients who had been through it before was instrumental in being able to get through the process.
It’s an exciting time to be joining CRI. New treatments are emerging left and right, and I am eager to help patients discover immunotherapies that may be right for them.