February 24, 2023
Olfactory neuroblastoma survivor champions self-advocacy and integrative medicine
BY Valerie Jones
When Regina Gibbs began having nasal congestion and a sore throat in late 2020, she assumed she’d caught COVID-19. The symptoms were similar, and she had been traveling.
But to Regina’s surprise, her physician referred her to a specialist who diagnosed her with nasal polyps. For almost a year, Regina took medication and used nasal sprays, but her condition didn’t improve.
“When treatment was unsuccessful, the specialist mentioned surgery,” says Regina. “I’d never had surgery in my life, so I declined and asked for a second opinion.”
When her first MRI didn’t reveal much new information, Regina had a repeat MRI.
“I don’t know if the second MRI was at a different angle or was a different type, but it was obvious that I had a tumor,” says Regina. “My doctor ordered a biopsy to determine if it was cancerous.”
Once the biopsy results came back, Regina was diagnosed with olfactory neuroblastoma, a rare type of nasal and sinus cancer that frequently involves the base of the skull.
Choosing MD Anderson for olfactory neuroblastoma treatment
Regina was referred to two local hospitals near her hometown of Oakland, California. But she wanted to do her own research first.
“I’d never heard of olfactory neuroblastoma, so I researched online to learn as much as I could about it,” she says. “I learned it was rare, which was a little scary.”
For weeks, Regina scoured forums on the internet, tapped into her network of friends and set up appointments to visit doctors and get more information about her diagnosis.
Regina also found guidance on social media. She was searching for testimonials from olfactory neuroblastoma patients and found some groups to join. From there, she asked group members about recommendations for doctors and treatment centers.
One doctor’s name kept coming up: MD Anderson head and neck tumor surgeon Ehab Hanna, M.D.
Regina read several of Dr. Hanna’s published journal articles and was confident he had the expertise to treat the rare form of cancer.
“I needed a high-volume treatment center with doctors who had experience in treating this condition,” Regina says. “I felt like I needed to try MD Anderson, and I had close family in Houston, so I knew I’d have a support system. It seemed like a good fit.”
Surgery to treat olfactory neuroblastoma
When Regina had her first appointment at MD Anderson, she was greeted by Head and Neck Center clinical nurse Marie Pope.
“Marie was very sweet, welcoming and comforting,” says Regina. “She just had a caring presence.”
Regina also met with other members of her care team, including radiation oncologist Jack Phan, M.D., Ph.D., and neurosurgeon Franco DeMonte, M.D.
The first thing Dr. Hanna did was order an updated MRI, bloodwork and pathology review of Regina’s original tumor tissue to confirm her diagnosis and eliminate the possibility of other types of paranasal cancers before recommending treatment. Regina appreciated this approach and was glad her care team took steps to ensure she received the proper treatment.
In March 2021, Regina underwent surgical removal of the tumor through an endoscopic nasal procedure combined with a craniotomy. Through the endoscopic nasal approach, Dr. Hanna removed the lower portion of the tumor while Dr. DeMonte removed the portion of the tumor beneath her brain. After that, Regina had six weeks of highly conformal radiation to reduce the radiation dose to nearby organs, such as the brain and eyes.
“I followed every instruction and then some to make sure I had a successful experience,” Regina says. “I was doing everything I could to prepare my body for the treatment, including drinking a lot of water and taking walks post-surgery.”
Faith, family and friends she could count on
Regina kept a close circle of friends she refers to as her core support group, which included family, coworkers and church members. They shared prayers, sent Regina “healing” hats when she lost her hair and gave her a notepad full of daily inspiring messages to count down her days of radiation treatment as well as words of encouragement for her difficult days.
“These were close friends and family who I felt understood me as a person, who were close in my faith in God and whom I could be vulnerable with,” says Regina. “I knew I could depend on them to check on me every day. These are the people who say, ‘I'm not too busy to call you and fill your head with positivity and hope.’”
Managing nutrition during treatment
Although she suffered some hair loss and temporarily lost her sense of taste during radiation treatments, Regina says her side effects were minimal. She credits her dietitians at MD Anderson for finding foods she could eat and still receive the proper nutrients.
“I want to continue to be cancer-free, and I know that diet is one of the weapons I can use to make sure that I stay cancer-free,” says Regina.
Seeking out new activities
In between surgery and radiation treatments, Regina sought out local activities to keep her busy and shift her focus from the treatments. One of those activities included taking DJ classes at a music center in Houston. The class instructor’s father happened to be a urologist at MD Anderson.
“That class was great,” says Regina. “There were days I came to class and didn’t have much energy, but the instructor didn’t stop. He encouraged me to keep going.”
Finding success with Integrative Medicine
Regina’s activity-seeking also led her to the Integrative Medicine Center at MD Anderson. She participated in cooking classes, yoga and music therapy.
“The integrative medicine and nutrition teams were critical throughout my treatment and survivorship journey,” says Regina. “The cooking course taught me a lot about cooking products and nutritional choices when shopping and preparing food; the yoga classes helped with my mood and mindset, and I forged a lot of meaningful friendships through the music therapy classes, which I still attend virtually whenever I can.”
Regina describes her experience as a cleanse of her former self.
“It felt like I was starting life all over,” she says. “I was looking forward to total healing and total recovery. I was looking beyond the hurdles I was facing and beyond the fears I had about the whole thing.”
These days, Regina is back living in California and flies to Houston to visit MD Anderson every four months for checkups. Because she’s doing so well, she’ll soon only need to visit every six months.
Regina credits her care team for her recovery and has this advice to share with other patients: “Be your own advocate. Ask for what you need. Being the designer of your treatment plan is so important.”
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
The integrative medicine and nutrition teams were critical throughout my treatment and survivorship journey.