Source: www.everydayhealth.com
Author: Oladimeji Ewumi, Medically Reviewed by Walter Tsang, MD of American College of Lifestyle Medicine

Head and neck cancer affects the mouth, throat, or voice box, and is diagnosed in almost 800,000 people globally each year. This year in the United States, there were an estimated 54,540 new cases of oral and throat cancer. If you are a Black American recently diagnosed with head and neck cancer, it’s important to know that this cancer affects you differently than it does other people.

Head and neck cancer has a 20 percent higher death rate in Black Americans than white Americans, as reported by the American Cancer Society. A study published in 2023 in the journal Cancers reported that Black people have worse overall survival rates for the different subtypes of head and neck cancers, are more likely to develop advanced forms of the disease, and usually require a longer duration of treatment than white people. Black Americans also receive less aggressive, appropriate, and timely treatments than white Americans with the same cancers, even when other factors such as insurance and tumor type are controlled, according to an analysis published in 2016 in the Journal of Healthcare for the Poor and Underserved.

So, what is a Black person to do when faced with a diagnosis of head and neck cancer?

“Knowledge is power, and asking the right questions can go a long way at the individual level to help your doctor learn new evidence,” says Mihir Bhayani, MD, associate professor and head and neck oncologic surgeon at Rush University Medical Center in Chicago. As a patient, you are in charge of your care, and the more questions you ask, the better, he says.

Have an open discussion with your doctor following a head and neck cancer diagnosis. Asking questions offers an excellent starting point to help you learn more about your care and make informed decisions about your treatment plan. Here are some questions you’ll want to ask your doctor.

What are my treatment options?
Following a head and neck cancer diagnosis, you may want to ask the doctor about available treatment options, what treatments are recommended, which have the best survival rates, and the quality of life advantages and disadvantages of each, says Rodney J. Taylor, MD, MSPH, chief of head and neck surgery at the University of Maryland Medical Center in Baltimore. “Early treatment universally leads to better patient outcomes and quality of life for all tumor and cancer types,” he says.

When can I start treatment?
Early treatment for head and neck cancer is 60 to 95 percent effective. According to Barbara Burtness, MD, professor of medicine at Yale School of Medicine and chief of head and neck cancer at the Yale Cancer Center in New Haven, Connecticut, it is important to begin treatment in a timely fashion. Asking the treatment team what the standard treatment is, how soon it can start, and if there are any barriers to receiving standard treatment can help avoid unnecessary delays.

What side effects are possible and how can I avoid them?
“Some of the most commonly used treatments for head and neck cancer can increase the risk of kidney damage, and chronic kidney disease is more common in the Black community,” adds Dr. Burtness. “For this reason, it is also a good idea to ask your doctor what the side effects and aftereffects of treatment will be, if the treatment will damage your kidneys and what you can do to reduce that risk,” she says.

Will my insurance cover treatment?
“The treatments for head and neck cancer involve surgery and radiation therapy, which tend to be costly,” says Meghan Crawley, MD, head and neck surgical oncologist at Miami Cancer Institute. Although many hospitals offer charity care for cancer patients without insurance, it is safer to ask if your insurance plan covers your treatment and what your options are if you are uninsured, she advises.

What will my follow-up care look like?
Keeping up with your follow-up appointments and post-treatment care after finishing therapy for head and neck cancer leads to a significant improvement in quality of life.

Burtness suggests asking what support you can receive from a nutritionist and speech or physical therapist to help you during treatment and follow-up care.

“It is essential to know what the follow-up schedule looks like and learn prevention strategies to reduce the risk of recurrence,” says Dr. Taylor. “Usually, you will undergo testing and surveillance visits several times a year to confirm your response to treatment and monitor for any recurrence,” Dr. Crawley adds.

Will I be given specialized care?
It would help if you asked whether your facility provides tertiary care, says Dr. Bhayani, which means specialized care delivered by specialists with extra training and experience. Mortality rates of Black and white people with head and neck cancer are essentially the same when care is delivered at a tertiary care hospital, he says.

It’s important to know that no matter your color, several people will be involved in your care, Bhayani adds, including teams of specialists and an increasingly important team member known as the patient navigator, who is professionally trained in cancer care. “Their expertise comes from their lived experiences, and they can help you navigate the parts of the cancer journey that don’t wind through hospital halls,” he says.

For optimal outcomes, Taylor recommends having a treatment team that understands and addresses the cultural and social barriers that impact treatment.

Crawley encourages Black people to select specialists you feel comfortable with and have confidence in their care. It is also important to communicate to your healthcare team any cultural practices or beliefs that are important to you and can impact your treatment decisions or care, she adds.

Am I eligible for any clinical trials?
Ask if any clinical trials that might improve cure rates or help reduce toxicity are available. Although getting past generations of mistrust — especially involving the word “experiment” — will take years, Bhayani encourages Black patients to help researchers develop new cures for everyone by enlisting in clinical trials.

“If new drugs and treatments are developed based on studies where the population is 90 percent white, available treatments will be evidence-based therapies for white patients,” he says. “Do your research, ask questions about the evidence, and [get] the answers you deserve.”