Understanding Nasopharyngeal Cancer & Navigating The Cost of Treatment
- Brian McNamara, a dad of four from Freehold, New Jersey, thought he was suffering from “swimmers ear” after spending a lot of time in his pool last summer, but his symptoms persisted and progressed to double vision and extremely painful headaches.
- A trip to the hospital led to his diagnosis of a rare and aggressive type of head and neck cancer called Nasopharyngeal Small Cell Neuroendocrine Carcinoma. The National Cancer Institute (NCI) describes this as form of head and neck cancer that develops in the tissues of the nasopharynx, the upper part of the pharynx, located behind the nose.
- Advocating for your health is extremely important. You never know when speaking up about issues with your body can make a world of difference for health outcomes. One of our experts says there should be a plan for what the doctor will do for you after you leave every appointment.
- Medical bills can burden anyone, but if you’re facing enormous health costs, it’s important to understand you’re not alone and there are resources to help you pay your bills and ensure you get the care you need. You can negotiate payment plans, seek out government assistance programs, or look to advocacy groups.
- SurvivorNet offers lists of resources available to you for help paying your health bills.
After the feeling of a “clogged” ear persisted, the 44-year-old high school history teach and football coach, nicknamed “Coach Mac” by his students, went to the emergency room when his symptoms progressed to double vision and numbness in his face. An MRI and biopsy revealed he had a cancerous tumor in his sinuses.
McNamara then explained how his wife Jodi urged him to get checked, which led him to be prescribed antibiotics for the “infection” in his sinuses. However, by Thanksgiving, his headache became so painful that he needed to go to the hospital.
He also explained how the cancer he was diagnosed with “usually resides in the lungs,” but his is located in the sinuses and extremely rare, and although his doctor told him he have a 50/50 chance of beating the disease, he is determined to fight.”
McNamara’s treatments began with chemotherapy and proton beam therapy at the end of last year, both which he concluded just last month.
Now, he’s in need of additional treatment, including an expensive immunotherapy treatment, and his support system has raised more than $66,000 via GoFundMe.
A March update on his GoFundMe read, “We are still trying to get him started on immunotherapy; but insurance declined the appeal and now working on a second level appeal. Compassionate care use is not an option either and we were given an estimated exorbitant cost every 3-4 weeks.
“We are hoping that they will approve the second appeal, since he is supposed to start the treatment within 3-4 weeks of the end of his last chemo; which ended last week. Every day that goes by; is a day he doesn’t have the medicine to fight this aggressive cancer.”
The update continued, “There are other immunotherapies we can try, which we will have to explore if we don’t hear something in the next few days. He had a few decent days where he felt ok, but then the last few days were quite awful and he needed to rest in bed.
“Hoping as he recovers from the last chemo, he will start to have more good days than bad. Next PET scan and MRI are on April 16 and due to the aggressive nature of this cancer, he will need scans every 2 months. Thank you for following his journey and the continued support!!”
Understanding Nasopharyngeal Carcinoma – A Type of Head & Neck Cancer
According to the National Cancer Institute (NCI) nasopharyngeal cancer is a type of head and neck cancer that develops in the tissues of the nasopharynx.
The NCI explains that the pharynx is “a hollow tube in the neck about 5 inches long that is made up of three parts.”
The three parts are the upper part of the pharynx, known as the nasopharynx, which is the located behind the nose. “The nostrils are connected to the nasopharynx. Openings on each side of the nasopharynx lead to the ears,” the NCI adds.
Expert Resources On Head & Neck Cancers
- The HPV Vaccine Gardasil Now Approved For Prevention of Head & Neck Cancers– As Cases Rise in Men
- New Evidence Suggests Benefit Of Keytruda Immunotherapy For Some Head And Neck Cancer Patients
- Remembering Superstar Sammy Davis Jr. Who Died From Throat Cancer at 64; Head and Neck Cancer Treatment Has Advanced With Proton Therapy
- Get the Facts: What Do We Know About HPV-Linked Throat Cancer?
- Vapers and Hookah Smokers Could Be At Higher Risk for Nose, Sinus and Throat Cancers Due To The Way They Exhale, New Research Suggests
The middle part, which is under the nasopharynx, is the oropharynx. And the lowest part of the pharynx is called the hypopharynx, which opens up to the trachea (windpipe) and esophagus.
“When we breathe or swallow, the pharynx acts as a passageway for air to reach the lungs and food to reach the stomach. Nasopharyngeal cancer commonly begins in the squamous cells that line the nasopharynx,” the NCI says.
RELATED: What You Need to Know About Squamous Cell Carcinoma
Symptoms of this type of cancer may include difficulty speaking, breathing, or hearing, however signs and symptoms can vary depending on the person.
Other symptoms may include:
- a lump in the neck
- pain, pulsing, or ringing in the ear
- trouble hearing
- a sore throat
- stuffy nose
- nosebleeds
Symptoms of this nasopharyngeal cancer in an advanced state may consist of:
- misalignment of the eyes (strabismus)
- double vision
- headaches
- facial numbness
- facial weakness
“Nasopharyngeal carcinoma is diagnosed by biopsy of the tumor, which is often performed in clinic with a use of a small endoscope. This allows the head and neck surgeon to visualize the tumor and its extent,” according to John Hopkins Medicine.
“Imaging techniques (MRI and/or CT scan) may also help determine the extent of the tumor. Testing of the tumor for EBV is also recommended.”
Advocating for Your Health
Whether you are currently battling cancer or worried that you might have it, it’s always important to advocate for your health. Cancer is an incredibly serious disease, and you have every right to insist that your doctors investigate any possible signs of cancer. Or, if you simply have no idea what’s causing issues with your body, you should still seek professional help.
Be Pushy, Be Your Own Advocate, Don’t Settle
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview.
“And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you’re getting the care and attention you need.
One thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.
Let’s Talk About Provider Bias
What Is HPV & How Is It Related to Cancer?
Although it’s unclear whether McNamara had an risk factors which led to his diagnosis, it’s important to understand that nearly every sexually-active person will get HPV, which is linked to heightened cancer risk, at some point in their lives. However, most people with the infection do not know they have it and never develop symptoms or health problems from it. The virus is spread via sexual activity and can manifest as warts on your genitals or mouth.
When people talk about HPV and cancer risk, they tend to focus on cervical cancer. And while it’s true that nearly all cases of cervical cancer are caused by HPV, people should also be aware that HPV puts both men and women at risk of developing several other cancers as well including cancers of the sinus, vagina, penis, anus and throat.
Oral and throat cancers, for example, are both on the rise in young, non-smoking adults, and Dr. Allen S. Ho, an oncologist at Cedars-Sinai Medical Center, says HPV is the cause.
“The fastest-growing segment of the people developing oral cancers are young non-smokers, ” Dr. Ho told SurvivorNet in a previous interview. “HPV, a very common virus, one responsible for the vast majority of cervical cancers, is now identified as a cause of this rapid rise of oral cancers.”
Overall, HPV is believed to cause 90% of anal and cervical cancers, approximately 70% of vaginal and vulvar cancers, and 60% of penile cancers.
“There are no screening guidelines to screen for throat cancer, unlike cervical cancer with pap smears,” says Dr. Jessica Geiger, a medical oncologist at Cleveland Clinic Cancer Center, previously told SurvivorNet. “There are no standard tests to determine if you harbor the virus.”
On the plus side, HPV-related throat cancers are generally very responsive to a combination of radiation and chemotherapy treatments, according to Dr. Geiger.
“The cure rates for people who have HPV-related disease are a lot higher than those who have tobacco-related throat cancer,” she said.
Financial Resources to Consider
If you’re having difficulty finding resources or answers about how to get help paying for a disease or cancer you are battling, there are a few options you can consider. You can negotiate payment plans, seek out government assistance programs, or look to advocacy groups.
These are a few of the options cancer patients and their loved ones have to get help covering costs associated with treatment (from drug co-pays to travel assistance):
For Help With Treatment Bills
- The Cancer Financial Assistance Coalition can direct patients and their families to available local services.
- Many treatment centers offer extended payment plans and some may offer temporary payment delays, according to the American Cancer Society.
- CancerCare, which connects patients with oncology social workers, may be able to assist with co-pays, transportation, and other costs associated with care.
- The HealthWell Foundation may be able to help uninsured patients pay for treatment.
- The American Cancer Society may be able to link patients and their families up with local resources (they offer a 24/7 helpline).
- The Patient Advocate Foundation (PAF) works with patients and their insurance companies to resolve issues and may provide direct financial support to some patients.
- The Patient Access Network Foundation may be able to help with out-of-pocket costs associated with cancer treatment.
Paying for Cancer – Find Someone Who Will Advocate For You
Contributing: SurvivorNet Staff
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