By Steve Blanchard - June 01, 2021
Jen Poblete-Scaglione has always been one to be open and honest. As a person who identifies as non-binary, that often requires reminders about appropriate pronouns or explaining where one lands on a fluid gender scale.
But sometimes, those conversations can be difficult in a health care setting, and became something Poblete-Scaglione had to navigate when they were diagnosed with cervical cancer.
Poblete-Scaglione’s wife, Brandy, first convinced the marketing operations manager to seek medical attention after irregular periods and spotting began in May of 2020.
“I thought it was just stress,” Poblete-Scaglione, 33, said, remembering that COVID-19 quarantines had just began around that time. “Stress changes things and I thought that was causing irregular spotting. I hoped it would just clear up on its own.”
But when it didn’t, Poblete-Scaglione finally went to see a doctor, who found a cervical mass and sent them to the emergency room to stop any bleeding. The doctor there, an OB/GYN, was also uncomfortable with the findings and referred Poblete-Scaglione to Moffitt Cancer Center.
“From there, things just snowballed,” Poblete-Scaglione said. “Two days later I was at Moffitt.”
Finding comfort in care
At Moffitt, Poblete-Scaglione and their wife met with Dr. Jing-Yi Chern in Moffitt’s Gynecologic Oncology Program, who ran several tests. The results revealed stage 1/borderline stage 2 adenocarcinoma. The good news was it was caught early.
Adenocarcinomas are cancers that develop from glandular cells, and in Poblete-Scaglione’s case, the cervix.
“It was shocking,” said Poblete-Scaglione. “I didn’t think something like this would happen to me. Overall, my health is pretty good. I wouldn’t think cervical cancer or any cancer at this age was normal. I was in shock, but Dr. Chern told me that we found it at a good time.”
Poblete-Scaglione not only had timing on their side, but also their family.
“I was with my family when I saw [the results] and I have had their support throughout,” said Poblete-Scaglione. “From there I remained very open about my health and would update friends and family on Facebook so they would know what was going on.”
According to Chern, Poblete-Scaglione’s diagnosis meant they would be treated with the standard of care, which is usually six to eight weeks of chemotherapy and radiation. While his treatment was “standard,” Chern said she was impressed with how well Moffitt team members treated them.
"We care for all people and that means we treat all genders."- Dr. Jing-Yi Chern
“We care for all people and that means we treat all genders,” Chern said. “Times are changing, and health care professionals need to be prepared for how to treat patients from across the gender spectrum. Education is key to that and health care providers need to remember that we treat the whole patient.”
Because the cancer was stage 1, doctors shared that the chances of recovery were good. In late January, daily radiation and weekly chemotherapy appointments became routine and Poblete-Scaglione finished six weeks of treatment on March 15.
“I think the hardest part for me was the daily radiation in the morning at 7,” Poblete-Scaglione said. “I had to get up really early because I had to do things to prepare and to make sure my body was good to go for treatment. Tuesdays were the longest days because I had chemo later that same morning.”
The first two weeks of treatment weren’t as bad as expected, Poblete-Scaglione recalled. However, the last half of treatment brought on nausea and other GI issues. Naps became a regular part of the afternoon and short-term disability meant that work responsibilities could take a back seat, at least for a while.
Throughout the treatment process, Poblete-Scaglione’s wife was within arm’s reach. Her workplace was accommodating which allowed her to take Poblete-Scaglione to appointments and work from home.
“My wife was amazing and would ask the right questions and process all the information,” Poblete-Scaglione said. “It was wonderful having her by my side and Moffitt made sure we felt comfortable.”
Not only did the staff and faculty at Moffitt treat the relationship with respect, but they were also receptive to Poblete-Scaglione’s request to use the correct pronouns of “he” and “they.”
“I will respond to ‘she,’ that’s fine,” Poblete-Scaglione said. “I identify as non-binary, and while I don’t have a preference, I do have preferred pronouns. I don’t fully feel female and I don’t fully feel like I need to transition to male. Gender is a spectrum and I’m hanging out somewhere in the middle, but I do lean toward the more masculine side.”
Poblete-Scaglione said the focus was on treatment and health, rather than pronouns.
“I would have conversations here and there with Moffitt staff explaining that I am non-binary when I asked about aspects of treatment and recovery,” Poblete-Scaglione said. “No one even batted an eye. Everything has been great at Moffitt. I felt very comfortable.”
Closing knowledge gaps
While Poblete-Scaglione ‘s experience was a positive one, the lesbian, gay, bisexual, transgender and queer/questioning (LGBTQ) community has long been a medically underserved minority population in the United States. Disparities experienced by LGBTQ patients, especially in cancer care, can lead to poorer outcomes and overall health.
In 2019, Moffitt launched the first nationwide survey to identify potential gaps in attitudes, knowledge and institutional practices for LGBTQ patients. The results found that while a majority of oncologists (95.3%) were comfortable treating lesbian, gay and bisexual patients, only half (53.1%) were confident they knew the health needs of that patient population. And that number dropped dramatically for transgender patients; just over a third of oncologists (36.9%) surveyed felt they understood the needs of transgender patients.
Utilizing the information gathered in the survey, Moffitt researchers teamed with Sylvester Comprehensive Cancer Center at the University of Miami and UF Health Cancer Center at the University of Florida to create an online cultural competency training program to improve knowledge of LGBTQ-related issues among the cancer care community.
The Curriculum for Oncologists on LGBTQ populations to Optimize Relevance and Skills, or COLORS Training Program for short, contains four 30-minute modules. Two modules cover general topics, such as sexual orientation and gender identity. The remaining two modules discuss oncology-focused topics, including fertility and hormone therapy for LGBTQ patients undergoing cancer treatment.
While that training may not have played directly into Poblete-Scaglione’s experience, their ongoing cancer journey shows that more patients from this underrepresented population need proper care and treatment in a comfortable environment.
‘Listening to my body’
Looking ahead, Poblete-Scaglione is focused on rest and recovery and planning for physical therapy to help loosen any scar tissue that remains from the internal radiation.
“I’m just listening to my body,” Poblete-Scaglione said. “If I need to lie down, I lie down.”
While there is no official verdict on the cancer and the success of treatment just yet, doctors remain optimistic and they should know where things stand in late June.
One thing Poblete-Scaglione does know is that hormone therapy is a very real possibility. Because they had no plans to transition, Poblete-Scaglione was not on hormone therapy prior to cancer treatment. Now, however, hormone therapy may be necessary because of the focused radiation.
“Since treatment, estrogen isn’t produced anymore and I will need some kind of hormone therapy to make sure my body is still up to par with its to-do list on a daily basis,” Poblete-Scaglione said. “So that’s something I’m going to explore and ask about. I’m interested in low dose testosterone, but I need to learn more about that.”
It’s a journey that is reminiscent of Poblete-Scaglione’s own self-discovery as a non-binary individual. Research is something that comes naturally.
“The more I researched the more I found that some of these terms and identities make sense to me and plays into how I feel about myself,” Poblete-Scaglione said. “I was curious about the transgender community a few years ago and that’s how I learned that gender is a spectrum.”
Whatever is next for Poblete-Scaglione, one thing is certain – they will continue to remind people to stay on top of their health and listen to what their bodies are telling them.
“Go for your routine exams,” Poblete-Scaglione said. “If you have female parts, go get your exam yearly. It’s uncomfortable and not the best experience in the world, but you don’t want to end up in my situation.”