7 Questions to Ask Your Doctor if You’re Black and Have Head and Neck Cancer

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," says Mihir Bhayani, MD, an 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.

Here are some questions you’ll want to ask your doctor so that you can make informed decisions about your treatment plan.

What Are My Treatment Options?

Following a head and neck cancer diagnosis, you may want to ask your 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, the 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?

What Side Effects Are Possible and How Can I Cope With Them?

"Some of the most common treatments for head and neck cancer, such as chemotherapy, 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.

Due to the possible side effects of treatment, it’s important to have a strong support group of friends or family. If you don’t have much help available, it’s best to tell your doctor early, so that the most appropriate treatment can be chosen. Your doctor may also be able to recommend other resources, such as transportation options or access to social workers for additional help.

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?

You should ask whether your facility provides tertiary care, says Dr. Bhayani, which means specialized care delivered by specialists with extra training and experience. Larger hospitals, such as National Comprehensive Cancer Network institutions, tend to offer more specialized care options. Not all cancer treatment centers are the same, so it’s important to explore your options. 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. If you trust your doctors, you’re more likely to pursue timely treatment, which can lead to a better outlook.

Am I Eligible for Any Clinical Trials?

Ask your doctor if there are any clinical trials that might improve cure rates or help reduce toxicity. You can also research clinical trial opportunities online yourself, at ClinicalTrials.gov. 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."

The Takeaway

• Head and neck cancer is a more aggressive problem in the Black community than it is among other groups.
• Discuss possible side effects of treatment with your doctor to ensure that your treatments go as smoothly as possible.
• Advocate for yourself by asking questions, seek doctors you trust and who understand your needs, and seek specialized care, if possible.
• Clinical trials may be an option to improve your overall care and outcome.