Patient Profile: Sylvia Makes Room for Cancer
“It’s been a journey,” says Sylvia, in what most would consider a vast understatement. The journey Sylvia is referring to is being diagnosed with stage IV metastatic breast cancer in April of 2024 as a young woman in her twenties. “I was just like, ‘Oh, crap,’” says Sylvia, another understatement, but indicative of her low-key approach to life and cancer.
Sylvia felt a lump in her breast one day while showering in the fall of 2023. It was remarkable and worrisome, but as a young woman with no history of breast cancer in her family, it was easy to back burner any concerns, at least initially. As the lump grew, ignoring it became harder. “I was a bartender and working non-stop to get my mind off of it. I knew my life would flip upside down when I was diagnosed,” says Sylvia.
Within a few months of finding the lump, Sylvia began to experience episodes of partial blindness, “I would be looking at someone and half of their face would be blocked out. I knew something was wrong.” While Sylvia had insurance, she did not have a primary physician, so finding a place that would accept her for a mammogram without a referral was challenging, “No one would even talk to me. It was one of the hardest, most frustrating parts of this.”
Finally, Sylvia took herself to an emergency room. She told the health care professionals, “I think I have cancer,” and identified the lump she had found six months earlier. The ER staff was incredulous, to put it mildly. “I just thought I had breast cancer,” says Sylvia. What she had was, indeed, breast cancer, but it had spread to her liver, lungs, and brain, as confirmed by a series of tests completed over a hospital admission that lasted several days at the time of diagnosis.
It was during that hospital stay that Sylvia met Dr. Ellen Gustafson, an oncologist/hematologist with the New Lenox, Illinois location of Hope & Healing Cancer Services, “From the beginning,” Sylvia says, “she has been the perfect oncologist for me. I don’t need or want someone to baby me or pity me. God put her in front of me that day.” Sylvia sought out a second opinion at a Chicago hospital, but chose to remain with Dr. Gustafson, “They just confirmed what I already knew. It overwhelmed me a little and made me feel like a guinea pig. My first choice was working for me, so I decided to stick with it.”
Sylvia was started on her first round of treatment, a potent form of chemotherapy known as the ‘Red Devil’ for its bright red color. She capped out on that, and her tumors were stable, with no growth or shrinkage. Good, but not great. A second protocol was started, another IV chemotherapy, though less intense, but that, too, did not shrink any of Sylvia’s tumor locations, all of them remaining stable with no growth. With the two IV chemo treatments keeping her cancer from growing, but not shrinking it in any way, Sylvia was switched to a different protocol of oral chemotherapy with a monthly injection.
This protocol has had a very positive impact on Sylvia’s cancer. Tumors in the brain, lungs, and breasts have responded very well to the treatment, though there is some residual tumor that remains in her liver. “My liver is still struggling a little,” says Sylvia, “It’s stubborn.”
Sylvia is realistic about the realities of living with a stage IV cancer diagnosis, “I know there is no cure for what I have, that it is about managing the cancer. I am going to live with this until I die.” Despite that knowledge, Sylvia has managed to find balance and live her life. While it may not be the life she imagined, it is the life she has, “It’s okay to be afraid,” she says, “but take care of yourself sooner rather than later. You have to deal with the pain and the fear. It will eat you up otherwise.”
Sylvia credits Dr. Gustafson for helping her. “We’re going to get you through this,” is what Dr. Gustafson told her when they first met. “She’s been on my side about everything,” says Sylvia about her oncologist, “She’s old school and I love that. She’s never doubted me. On my visits to the clinic, we talk about cancer for three minutes and then we shoot the sh**. She just gets me.”
The relationship between a cancer patient and their oncologist is a unique one. Each patient and each oncologist are different. “I didn’t get to choose if I got cancer,” says Sylvia, “but I do get to choose how I deal with it. With Dr. Gustafson, it’s like, ‘Okay, put me in, coach, I’m ready,’ and she gets that. She has been amazing for me.”
Other things that help Sylvia live her best life with cancer are family, yoga, therapy, and travel. Sylvia spent part of last winter in Florida and that shifted her mindset, “Just being outside in the sun, walking, grabbing twenty minutes of exercise when I could.”
Sylvia has seven siblings who are all very supportive of her, “I like to bake so they buy me ingredients, magazines, smoothies when I need it. My little brother always has my back and from Day One has not left my side. Nobody feels like they need to walk on eggshells around me.” Sylvia’s therapist helps her keep her “brain right,” as she calls it, “You can only lean on family and friends so much – sometimes you don’t want to lay everything on them.”
Dealing with the reality of a stage IV diagnosis is a lot for a young woman in her twenties, but Sylvia manages it with grace, “I have cancer,” she says, “but I am more than my cancer. A year ago, sneezing or laughing would make me feel like I was drowning. Now, I am back to exercising and even doing some cardio. This is just who I am now. I have to keep on top of my stuff, but I am not my cancer.”
