Cancer comes with many physical, emotional and financial challenges. From making decisions about your treatment and coping with side effects to dealing with medical bills and addressing your health battle with loved ones or coworkers, the hurdles can seem daunting.
Add in deafness or difficulty hearing and the obstacles amplify. Patients who are deaf or hard of hearing may struggle to simply understand their diagnosis or to feel their wishes and concerns are being heard.
In some cases, cancer treatments may even cause or worsen hearing loss, forcing patients to deal with more post-diagnosis challenges.
Sheila Hartigan, an oncology information specialist and relationship manager on the Community Engagement Outreach Team at City of Hope® Cancer Center Chicago, is more familiar than most with the challenges cancer poses to people who are deaf. Her mother, deaf since birth, is now 90 years old and has faced three distinct cancer diagnosis over the past three decades.
In her role at City of Hope, Hartigan helps people who are deaf or hard of hearing navigate a cancer diagnosis, a role she has played in her own family since she was a child.
“Sign language was my first language,” Hartigan says.
In this article, we’ll explore:
- Delayed Cancer Diagnoses Within the Deaf Community
- When Cancer Treatments Make Hearing Loss Worse
- Managing Hearing Loss When You Have Cancer
- How Hartigan Found Her Purpose
If you or a loved one has been diagnosed with cancer and are looking for a second opinion, call us 24/7 at 877-524-4673.
Delayed Cancer Diagnoses Among Deaf Patients
Born to a mother and father who were deaf, Hartigan says a major lesson she learned from her childhood was that people who are deaf tend to be very private with a close circle of friends. Many in the deaf community grew up together and have known each other since they were very young. While this may create very strong community, the privacy aspect often leads to delayed diagnoses and delayed medical treatment, as information is not always shared.
Research has shown that delayed diagnoses are common among people who are deaf. A study published in the journal BMC Cancer found that people who are deaf are diagnosed at more advanced stages of cancer than the general population.
Hartigan has come across evidence of this in her work, as well, noting she’s currently helping a man who is deaf get a second opinion after he was diagnosed with cancer. He wasn’t comfortable with the advice he was originally given, and he needed to know more.
“He’s a young father,” Hartigan says. “He was told to watch and wait to see if it grows. He wasn’t comfortable with the advice he was given. But he was putting off doing something about it.”
When Cancer Treatments Make Hearing Loss Worse
Although it doesn’t impact people who are already deaf, hearing issues for people with mild to moderate hearing loss may worsen with certain treatments for cancer, such as surgery or radiation therapy to the head and neck area.
But the biggest cause of hearing loss among cancer survivors is chemotherapy.
Can Chemotherapy Cause Hearing Loss?
Some common chemotherapy drugs, especially those used to treat ovarian, testicular, colon and rectal cancers, may damage nerves and other tissues in the ears, particularly in patients receiving the drugs in high doses and those with preexisting hearing issues.
About half of all chemotherapy patients are treated with a drug made with platinum, a heavy metal, that may damage the myelin sheath — the plasma membrane that forms around the nerves and protects them. The drugs also may affect the fine nerve endings inside the ears.
Three of the most common platinum-based drugs are:
- Cisplatin, used to treat:
- Bladder cancer
- Cervical cancer
- Head and neck cancer
- Non-small cell lung cancer
- Ovarian cancer
- Testicular cancer
- Carboplatin, used to treat:
- Breast cancer
- Bladder cancer
- Cervical cancer
- Head and neck cancer
- Lung cancer
- Ovarian cancer
- Testicular cancer
- Uterine cancer
- Oxaliplatin, used to treat:
Taxane-based chemotherapy drugs, like paclitaxel and docetaxel, are also linked to hearing loss.
According to a study published in the BMJ Supportive & Palliative Care, more than half of cancer survivors who were treated with platinum- or taxane-containing chemotherapy drugs for four of the most common types of cancer — lung, breast, gastrointestinal and gynecologic — experienced clinically significant hearing loss. More than 35% reported tinnitus (ringing in the ear).
Chemotherapy and Tinnitus
Hearing loss or tinnitus caused by chemotherapy drugs doesn’t typically go away. Instead, it tends to be cumulative and slow to progress. For that reason, most doctors first test patients’ hearing to determine a baseline, then monitor their reaction to a certain drug, changing the dose or the drug itself, if needed.
Hartigan’s mom has dealt with tinnitus from cancer treatment.
“It’s real for both hearing and deaf people,” Hartigan says.
Managing Hearing Loss When You Have Cancer
Understanding cancer and treatment options within the deaf community requires acknowledging the unique challenges in communication and access to healthcare information, Hartigan says.
“Just coping with cancer alone is tough enough but having the added piece of being deaf or hard of hearing is a whole different picture,” she says.
Barriers such as the lack of sign language interpreters, written materials, and culturally appropriate resources make it harder for deaf and hard of hearing individuals to fully understand their diagnosis and treatment options.
To help navigate the challenges, Hartigan encourages patients she works with to get a second opinion.
“I want them to feel confident in what their next steps are going to be,” she says. “They need to know they don’t have to accept one doctor’s opinion.”
The Americans with Disabilities Act of 1990 requires that the communication needs of people who are hard of hearing and deaf are met, and that frequently means the use of a sign language interpreter.
“It's important that we offer information in a way that is clear and accessible, so our deaf patients can make informed decisions about their care,” Hartigan says.
Additionally, services that address emotional and social needs and fostering a supportive environment, may also help improve the overall experience for deaf individuals undergoing cancer treatment.
How Hartigan Found Her Purpose
Growing up with deaf parents, Hartigan and her sisters served as their parents’ ears and voices as children. Yearly physicals, parent-teacher conferences, even grocery store visits required them to jump in and help translate spoken words into sign language.
Hartigan learned that people who are deaf tend to get talked down to. She also learned they may have a hard time understanding the information presented to them, not to mention successfully articulating their needs.
When Hartigan’s mom was first diagnosed with cancer in her breast when she was 60 years old and then, 10 years later, with kidney cancer, Hartigan hadn’t heard of the cancer center where she now works. Today, though, she not only works there, but multiple family members are patients at City of Hope Cancer Centers in Chicago and Phoenix.
“God put me here for a reason,” Sheila says. “I know that for sure.”
Part of Sheila’s job as a relationship manager is to empower the deaf community, help people understand how they can get help if they have a cancer diagnosis and make sure they know they have an ally at City of Hope.
“The deaf community is family to me, and they view me in the same way,” she says.
If you or a loved one has been diagnosed with cancer and are looking for a second opinion, call us 24/7 at 877-524-4673.