Hil Moss is our guest on Season 2, Episode 5 of the DiepCJourney Podcast. A young breast cancer survivor (diagnosed at 28), Hil is an active patient advocate, mentor, and writer in the cancer community, and dedicates her time to raising awareness around the importance of early detection and longitudinal survivorship care. She is also an MBA/MPH Candidate at Yale University, with a focus on entrepreneurship and innovation in cancer care. She made the choice to leverage her own tissue to reconstruct her breasts having DIEP flap breast reconstruction.
Hill shares her story from diagnosis, breast reconstruction, and through to her recovery. She shares her connection to the Breasties community and the advocacy work they share. Our call to action in Episode 5 with Hil, a young breast cancer survivor, is to begin doing breast self-exams at an early age. A breast self-exam for breast awareness helps you understand changes in your breasts tissue that include the look and feel of your breasts. Breast cancer does not discriminate, even for young women. Beginning BSE (breast self-exams) at the age of twenty is recommended especially because younger women’s breasts tend to present with more dense tissue, making it difficult to see lumps on a mammogram. Here is the summary Episode 5 and why Hil, became a young breast cancer survivor advocating for survivorship.
The Diagnosis of a Young Breast Cancer Survivor
In spring of 2018, Hil made an intentional decision to improve her health. She took time over the summer to travel, train for a triathlon, all in preparation for graduate school. She made it through about 2 weeks of orientation and 4 weeks of class. One evening, while lying on top of her sheets on a hot, humid evening, Hil touched the side of her breast and felt something. It was about the size of a pea and very hard. She admits to being lovingly neurotic and felt concerned. This was all leading up to her role as a breast cancer survivor. Her concern was realized the next morning when she woke up and her breast was completely swollen. Her instincts told her it was a breast infection based on prior experience having one.
After seeing her physician, it became clear this was not an infection. She was told not to worry. It was likely not cancer. She was too young with no family history. A biopsy was recommended. She called her parents to let them know. Her concern was not that it was cancer but that it was going to interfere with mid-terms exams. Concerned, her parents drove up to be with Hil. She fully expected not to hear results until after the weekend so send her parents’ home.
Eighteen hours later, to her shock and surprise she learned she had an aggressive form of triple positive breast cancer. She traveled back home to begin chemotherapy treatment at Dana Farber Cancer center. Additionally, she learned she also carried the ATM genetic mutation putting her at higher risk of breast cancer. This was important in determining her treatment and surgical decisions.
The Breast Reconstruction Decision of a Young Breast Cancer Survivor
After completing chemotherapy Hil decided to have a double mastectomy. She did not experience nausea and vomiting like some cancer patients do while on chemotherapy. But the steroids and changes in her taste buds gave her a ravenous appetite. She gained thirty pounds. But serendipitously, she gained it in the “sweet spot,” her tummy, which is what was going to be used to reconstruct her breasts, DIEP flap.
Very quickly became invested in the online young survivor’s community. This is how she found out about her surgical options for reconstruction. Hil honestly didn’t know if she would be a candidate for DIEP flap. That “sweet spot” as she called it would be used to harvest the flaps for her reconstruction. Her surgeon told her she was a perfect candidate. Hil was absolutely amazed, like me, at the entire process of DIEP flap, microsurgery, and possibility to reconstruct your breasts using your own tissue. She was on board with this incredible procedure.
Survivorship Decisions for Young Breast Cancer Survivors
There are a number of things to think about for a young breast cancer survivor. Hil points out one of the most difficult and emotional aspects is often thinking of your future and fertility concerns. It comes with big life decisions and for many young survivors, like Hil, it is a sensitive and emotional topic involving long-term survivorship care.
We discussed breast feeding and what that means for women who have breast reconstruction. The most important take away from our conversation was this; women in general should not feel pressured to breast feed. There are many reasons, including breast cancer and having a mastectomy, for women not to breast feed. The societal pressures are not something women should be put upon by during a time in their lives where other decisions are weighing heavy on their lives. Hil’s message, there cannot be an overarching moral imperative that is associated with breast feeding. It can be very harmful to any woman to have this pressure put on them about breast feeding. Understanding the education and options are the most important.
Hil’s DIEP Flap Breast Reconstruction
Memories are a bit blurry when she thinks about how she found her surgeon and the time leading up to her consult. What she remembers well is the feeling of trust and respect for his skill level after meeting with her reconstructive surgeon. Hil felt an instant connection with him. His extremely interesting set of capabilities has he applied not only to breast reconstruction but to amputations of many kinds. She found his extraordinary mission to be so inspiring. We discuss the specialty of microsurgery and how it inspires both of us in our work today.
She feels DIEP flap is amazing gift to give to yourself to be able to use your own tissue. We jokingly say it was like “regifting” to yourself. Hil describes her choice to have DIEP flap as the best decision she made but also the hardest week of her life. It was not without its complications.
The day following her successful surgery she developed a hematoma in what can only be described as a Gray’s Anatomy moment being rushed back into the operating room to tend to the problem. In the hands of her skilled surgeon, everything was resolved, the flap was saved, and she was wheeled back to her room for recovery. We share the importance of finding a well-qualified surgeon. In microsurgery, things can and will go wrong. It is the mark of a true plastic surgeon who gets you all the way through to the other side despite any issues. That was the case for Hil.
Her Work in Young Breast Cancer Survivorship
Hil shares with us her close friends and community in the Breasties, a 501c3 nonprofit dedicated to help those impacted by breast cancer or reproductive cancers. This community is truly making a difference for her. To actually meet another woman in similar situations as Hil was extraordinary to her. She has built relationships and longtime friendships with this organization. Finding connections in like-minded communities is so powerful. The commonality of being affected by breast cancer helps break down all barriers, regardless of age, race, sexual orientation, or geographic background. Your common bond is the diagnosis and survivorship after treatment and recovery. This is why being a young cancer survivor who advocates for survivorship has become so important to Hil
No breast cancer Journey or patient advocacy journey looks the same for any two people. In a cancer Journey, what’s right for you is not right for the next person. And speaking of personal Journey’s, since the podcast, Hil achieved her goal of graduating with an MPH from Yale School of Public Health Congratulations on a life well lived and being a role model as a breast cancer survivor for those affected by breast cancer and have breast reconstruction! You can listen to the entirety of Episode 5: A Young Breast Cancer Survivor Who Advocates for Survivorship here: