Crystal Semegran-Mollica’s journey began unexpectedly in February 2022 with a seemingly simple yet alarming issue: she was suddenly unable to urinate. At first, she tried to brush it off, mentioning it casually to her then-fiancé (now husband), but as the pain and urgency grew, he insisted they go to the emergency room. There, after being catheterized and releasing over 800 milliliters of urine, the medical team warned that her bladder could have ruptured had she waited any longer.
Despite the severity, no imaging was done at the time. Crystal was advised to follow up with a urologist. After multiple appointments, unresolved symptoms, and unhelpful recommendations—including being told to wait two months for further testing—Crystal took charge. With support from her family, she sought out a trusted family friend who was also a urologist. A CT scan finally revealed a mass initially believed to be on her uterus.
That early assumption led to a referral to a gynecologic oncologist, but an MRI revealed the tumor was actually located deep in her pelvis. Crystal was then referred to a surgical oncologist who ordered a series of additional tests. It was during this time she received a devastating phone call at work: the tumor was cancerous, believed to be liposarcoma. She remembers the moment vividly—retreating to a private office, numbed by the diagnosis. But even in shock, she focused first on gathering information, saving emotion for later.
Her care team at the time recommended inpatient chemotherapy. Unfortunately, during the second round, Crystal experienced severe bladder bleeding, and by the third round, the chemo was halted altogether. The tumor showed no shrinkage, and a major surgery was proposed. The surgical oncologist, in a rushed and impersonal conversation, informed Crystal she might wake up with a colostomy bag—information she delivered with little explanation or compassion.
Deeply unsettled, Crystal sought clarity. In a follow-up appointment, her father asked whether the tumor might be correlated to Crystal’s neurofibromatosis type 1 (NF1). The oncologist seemed caught off-guard—despite Crystal’s repeated mention of the condition during appointments—and left the room abruptly, returning only briefly to provide logistical details about the surgery. It was the final red flag.
Encouraged by loved ones and her supportive bosses, Crystal sought a second opinion from a sarcoma specialist in New York City. That decision changed everything.
The sarcoma specialist center took a vastly more comprehensive and cautious approach. Her new specialist confirmed the complexity of Crystal’s case, immediately assembling a multidisciplinary team: a colorectal surgeon, a urologist, a gynecologic sarcoma oncologist, and a gastroenterologist. Together, they developed a thorough plan that included more testing and considered long-term quality of life.
Ultimately, Crystal’s surgery—performed in October 2022—was a grueling 12–13-hour procedure that removed the tumor along with her bladder and rectum. She received both a permanent urostomy and a permanent colostomy and underwent a partial hysterectomy. The procedure required proctectomy surgery or a “Barbie Butt” closure and a complex abdominal flap reconstruction performed by a plastic surgeon. Her recovery was long and painful. When complications from her surgical stitches from the proctectomy caused the wound to reopen in December, she underwent a second surgery.
Further testing revealed that Crystal’s cancer had been misdiagnosed. It wasn’t liposarcoma, but malignant peripheral nerve sheath tumor (MPNST), a rare and aggressive form of sarcoma often linked to NF1. Had she followed through with the original surgical plan, which was to be performed by a single surgeon, the outcome could have been catastrophic.
Today, Crystal is nearing her three-year cancer-free milestone. Her resilience was fueled by a strong support system—her husband, who never wavered; her bosses, who treated her like family; and her dog Loki, who offered emotional support in the most challenging moments. She describes her husband as her rock, recalling how he brought buttered rolls and lollipops—her only chemo cravings—during hospital stays and ensured their lives weren’t only about cancer.
Her coworkers also played a critical role. One boss joined her for her second opinion appointment, and another organized a fundraiser to help with medical costs. Their compassion left a lasting impact, and Crystal remains deeply grateful.
Navigating cancer as a young adult presented unique challenges. Crystal struggled to find others her age with sarcoma. But through Instagram, Reddit, and online cancer communities, she connected with peers, forming friendships and exchanging experiences and advice. Her growing online presence has become a platform for advocacy. She shares her story openly, particularly about living with dual ostomies—an experience rare for someone her age.
Crystal is passionate about emphasizing the importance of specialized care. Her message to other patients is clear: if diagnosed with sarcoma, seek a doctor who specializes in it. Her own misdiagnosis could have been fatal had she not insisted on a second opinion.
Crystal now uses her experience to support others, offering her Instagram inbox as a safe space for those facing similar diagnoses. She advocates for body positivity and resilience, reminding others that life doesn’t end with an ostomy—it simply changes. And above all, she strives to be a beacon of hope, especially for young adults affected by a cancer diagnosis.
Connect with Crystal on all platforms: @double.ostomy.gal
