When Joshua Sanchez noticed blood in his stool, he visited his doctor. After numerous tests, doctors learned that he had stage 4 colon cancer. He had a mass on his liver that required a certain type of targeted radiation that relied on special vocal instructions during the treatment for it to work.
But Sanchez is deaf and an ASL interpreter couldn’t be in the room to translate for him. That’s when his treatment team got creative and made a set of goggles that allowed him to see a translator in another room during targeted radiation.
“I want to be a positive role model for deaf and other disabled people,” Sanchez, 38, a freelance artist in Spanish Harlem, New York, tells TODAY.com via a ASL translator. “I know in the Deaf community you’ll typically see people that might not know about communication access … a lot of people are afraid or they give up or they don’t know about alternatives out there.”
‘I thought I had a hemorrhoid’
In 2021, Sanchez noticed blood after using the bathroom.
“At first, I thought I had a hemorrhoid,” he says. “I felt like something still wasn’t great because I had noticed some blood.”
He visited several specialists who did some testing that confirmed he had blood in his stool. They did an endoscopy and colonoscopy.
“They saw something was around my liver and they also saw something in my colon,” he says. “They had noticed two different tumors and they had taken a biopsy of that.”
His doctor started him on chemotherapy as soon as he healed from the surgery and placed a port in his chest. Treatment, which included chemotherapy and a surgery to resect his liver, felt tough.
“It was just a really awful experience. I felt sick every day,” Sanchez says. “They decided to put another device. They put in a pump and that was on the left side of the abdomen.”
The pump he received is called a hepatic arterial infusion pump and it delivers chemotherapy directly into the liver, says Dr. Karyn Goodman, his radiology oncologist. Something occurred during that procedure, though, and Sanchez's arms became numb and he struggled to move them. That made communicating difficult.
“I couldn’t communicate at all. I was having a really tough time in the hospital,” he says. “I was there for three weeks. It was a really awful experience.”
His ASL interpreter helped advocate for him to receive better treatment.
“They weren’t treating me as a person,” he says. “It wasn’t a great feeling but I had some people there. I had the interpreters. I had my mom. Looking back on those three weeks, they were the longest I’ve ever had in my life.”
Slowly he recovered and chemotherapy continued.
“I was grappling with the trauma from being in the hospital and I didn’t have any time to really cope before transitioning into the next round of chemo,” Sanchez says. “I had to have a lot of sessions for there to be any real progress with that tumor and that was because the tumor on my liver had spread.”
Finding a solution
By 2022, scans spotted “multiple lesions” on his liver and his doctors were considering targeted radiation. Because the liver moves when someone breathes, doctors needed to give specific instructions on how to breathe during it. But audio instructions over an intercom weren’t going to work.
“The radiologist told me something about a new technology that was available for Deaf people,” he says.
“One of the treatments that we do for patients with liver metastases is, especially if they’ve already had surgery, … we use radiation as a way to eradicate the tumor,” Goodman, professor and vice chair for research and quality in the radiology oncology depart at the Icahn School of Medicine at Mount Sinai, tells TODAY.com. “That’s a specialized type of radiation that’s very, very high dose, and only a few treatments.”
Called stereotactic body radiotherapy, doctors place “little gold seeds” into the liver to identify where the tumors are in the organ. During the radiation, staff encourage people to breath normally so that it hits its target.
“As somebody is breathing, your liver is actually moving up and down. Your liver sits right under your diaphragm so it moves quite a bit when you breathe,” Goodman explains. “If we want to really be pinpointed with their radiation in a deliberate and very targeted way, we have to take into account that the liver is moving and the tumor is moving.”
Goodman says they use a process called “respiratory gating,” where they use the radiation on and off as a person breathes.
“We always catch the tumor in a certain position,” she says. “We usually treat when the patient’s breathing out.”
Sanchez’s care team needed to come up with a way to show Sanchez ASL instructions without having the interpreter in the room with radiation.
“We don’t want to expose staff to any radiation,” Goodman says.
Goodman worked with a physicist, Vishruta Dumane, to come up with a solution. They used virtual reality goggles to show Sanchez an interpreter who was in another room signing instructions on Zoom.
“The patient’s in the room, they’re getting treated so they get exposed to the radiation that not only goes to the tumor, but also there’s a lot of scattered radiation that is very low doses and minimum but it’s still … not insignificant,” Dumane, an associate professor of radiation oncology at Mount Sinai, tells TODAY.com. “Then because of the Zoom capabilities we can be logged in from different places.”
That meant Sanchez could both watch the ASL interpreter and see a “trace” that showed his breathing.
“This is a way that we can communicate with the patient as to how they have to breathe,” Dumane says.
She says that other centers could easily adapt this technology to provide the same sort of communication to Deaf and hard of hearing patients. Being able to provide appropriate accommodations during cancer care remains important.
“Medicine should be accessible to all kinds of patients,” Dumane says. “I’m glad our team has played a vital role in doing this and we are able now to talk about it and bring this technology or a description of it to a greater audience so that (others) can learn from it and implement it at their clinics.”
Sharing to help others
Sanchez has a lesion in his pelvis now and is receiving radiation for it. Luckily it doesn’t require special instructions on how to breathe. He’s grateful he doesn’t need more chemotherapy right now. After this course of radiation, he’ll undergo more tests to see if the cancer has stopped growing. Since his diagnosis, he’s learned about other family members with cancer and hopes everyone has an open conversation about their family medical history before receiving a diagnosis.
“I’m finding out a little bit as I’ve been going through the course of my treatments and it helps to know some of your family background,” he says. “We’re Latino so we don’t really focus on our health and we don’t talk about that and we don’t discuss vulnerabilities very often. So it’s a serious thing that needs to be communicated more.”
He wanted to share his story to raise awareness of younger people with colon cancer and to offer hope to Deaf and hard of hearing people worried they might not be able to communicate in the hospital or while undergoing medical treatment.
“Disabled patients often don’t tell their full stories because of fears. They’re not sure that they’re going to be listened to or have good experiences,” he says. “It’s very frightening and it’s very exhausting to always be fighting for equal opportunity for equal communication … But it can be better. It can change and I really hope that it does.”