As Natalie Suflita was driving, she noticed her foot was going numb. She had felt pressure in her lower back and worried about nerve damage. After many doctor’s appointments, she learned that she had a watermelon-sized mass in her pelvis. Several doctors believed it was cancer and recommended a hysterectomy.
“(The doctor) said, ‘I’m going to refer you to oncology,'” Suflita, 35, of Greece, New York, told TODAY. “I don’t remember anything from back then.”
After meeting with two oncologists, Suflita got a final opinion at NYU Langone Health’s Center for Fibroid Care and was told she could have the mass removed without a hysterectomy. She felt relief immediately.
“If my womb comes out … and then I find out it’s not cancer, I would be upset,” she said. “DR. Shirazian said, “You’re actually the perfect candidate for a laparoscopic[surgery]because of its location and because it grows on the stalk and outside – it doesn’t grow into the empty space, my uterine muscle.”
Back pressure, numbness and a surprising cause
Last fall, Suflita felt more pressure in her lower back and noticed numbness in her foot when driving for more than 45 minutes. She had back problems and now worried that she also had nerve damage. After meeting a doctor at a spine clinic, she underwent an MRI.
“I am obese, lower back pain is very common. When the results came back, they said, ‘We want you to follow up,'” she said. “I read the whole report and there is a large mass in the tank. Basically they said right in the x-ray report they couldn’t rule out cancer.”
Suflita didn’t have a gynecologist at the time, so she spoke to her GP and some friends who worked in healthcare. The day after her MRI results, she saw a gynecologist.
“They said, ‘Oh, that’s really common.’ They probably even said they think it’s a fibroid,” Suflita said. “They said, ‘A lot of women have it and you’re asymptomatic.'”
While she felt pressure and numbness, she didn’t have heavy bleeding with periods that are often a hallmark of fibroids. Despite this, she was concerned about what the original radiology report said she might have cancer and underwent an ultrasound at another gynecologist.
“When she reviewed the results with me, she said, ‘Yes, it’s a fibroid. It’s really big,” Suflita said. “She said, ‘We could do surgery to cut it out,’ but you have no symptoms.”
Her doctor said it couldn’t be removed laparoscopically because of its location and size, 8 by 8 inches. She asked for another imaging test, which the doctor ordered to help Suflita make her decision, and the doctor recommended that Suflita see an oncologist. The first doctor she saw wanted it removed, thinking that her uterus and ovaries might need to be removed as well.
“I thought, ‘So if it’s not a fibroid, what do you think it is?’ and he said, ‘Oh definitely a sarcoma, which is the most aggressive and ugliest of all cervical cancers,'” Suflita said.
She felt conflicted about the surgery. Although she wanted the mass removed, Suflita is not in a serious relationship and has no children. She wondered what would happen if one day she wanted to conceive but couldn’t due to a potentially unnecessary hysterectomy.
“I wasn’t okay with that if I woke up (after surgery) and didn’t have a uterus, of course luckily I didn’t have fibroids, but I didn’t have ovaries either and then it wasn’t cancerous,” she said. “I would regret it so much.”
She started the process to have surgery but opted out and sought another opinion. While this doctor made her feel more comfortable, she was still unsure about the treatments on offer.
“He said, ‘It’s quite a bloody operation to cut you open,'” she recalled. “It’s been so long at this point and I’ve been waiting for all these scans and follow-ups and I’m like, ‘Well, I’m not going to rush this. I’m just buying time to potentially save my uterus.’”
After meeting this doctor, she heard about the Center for Fibroid Care and got a third opinion. She had heard that a friend of a friend “successfully separated a soccer ball-sized fibroid from her uterus.”
“I was like, ‘Wow, that seems like a shot in the dark,'” she said. “[The doctor]looked at all the pictures and all the things together and she said, ‘I know they’re benign 99% of the time.'”
What are fibroids?
dr Taraneh Shirazian founded the Center for Fibroid Care at NYU Langone Health to help people with fibroids. They’re very common — they occur in 70% of women, she said. Even though they’re not cancerous, that doesn’t mean they’re harmless.
“Fibroids are benign tumors,” Shirazian, an OB-GYN in the Department of Obstetrics and Gynecology at NYU Langone Health, told TODAY. “These are often rapidly developing and rapidly growing tumors that are very vascular and draw a lot of blood. So they are growing massively.”
While about a quarter of fibroids are asymptomatic, others cause symptoms that affect people’s lives.
“They cause a whole range of problems from pain to bleeding to the need for blood (transfusions),” Shirazian said. “Patients come to the emergency room because they bleed every month. They cannot leave their homes. You can’t go to work. That creates pressure.”
Pressure on the bladder causes people to urinate frequently, while pressure in the rectum can cause constipation and pain.
“They can really devastate patients’ lives,” Shirazian said. “They really affect the quality of life significantly.”
Estrogen drives the growth of fibroids, and people with a family history of fibroids are more likely to have them.
“We also know that there are racial differences, so black women are affected much more than white women,” Shirazian said. “Although all groups are affected.”
Patients are often offered a hysterectomy, which may deter them from seeking treatment.
“Women with these large fibroids or masses go to their doctors across the country and they tell them the same horrible things as cancer. We’ll have to cut you open with a huge vertical incision down the middle and we probably won’t be able to keep your uterus,” she said. “Women are scared and don’t go back and the tumors keep growing.”
Shirazian said treatment for fibroids often doesn’t involve a hysterectomy.
“We have everything from drugs that can help shrink them,” she explained. “There’s this new procedure called transcervical laser ablation of fibroids.”
This procedure is for patients with smaller fibroids. The doctor inserts a vaginal probe that reaches the fibroid and burns the center. For larger masses, doctors often use a myomectomy, a minimally invasive surgery to remove the fibroid. In some cases, a hysterectomy is unavoidable.
“Patients shouldn’t be afraid to see their doctor,” Shirazian said. “There are many, many options and good support.”
surgery and recovery
After meeting Suflita, Shirazian knew she could help her.
“(The crowd) basically took up her entire belly. But I could tell it had many of the key features of a fibroid on their imaging,” Shirazian said. “I could see how it was attached to the uterus and how it could be separated from the uterus and her uterus preserved for her fertility.”
Suflita underwent a myomectomy and participated in Shirazian’s LIFE study, which aims to reduce fibroid recurrence.
“I was very interested in studying how we can prevent fibroids from coming back,” Shirazian explained. “(The study) is focusing on diet, lifestyle, supplements after surgery or procedures to see if we can minimize the recurrence of these fibroids.”
Fibroids recur in about 70% of patients, she added.
Suflita was operated on on a Tuesday and stayed in the hospital for one night before going home. This weekend she helped a friend with the gardening.
“The cuts took a minute to heal,” she said. “I’ve had a few awkward nights sleeping and repositioning, but it wasn’t like it was open surgery.”
Suflita encourages people to listen to their “gut feeling” when looking for a doctor.
“Seek as much support as you can, as much information as you can,” she said. “You must do what is best for you.”
CORRECTION (July 21, 2022 4:58 PM): An earlier version of this story referred to the Light program. It’s the LIFE study.