Understanding Sinonasal Cancer
- U.S. Army veteran Brian Hooks was diagnosed with a rare form of sinonasal cancer called SMARCB1 deficient sinonasal carcinoma (SDSC) after undergoing root canals and tooth extractions. Now he’s urging others to push for answers when unusual symptoms persist.
- According to NY Langone Health’s Perlmutter Cancer Center sinonasal cancer “develops in the nasal cavity, which is the space behind the nostrils, and the paranasal sinuses, the air-filled cavities on either side of the nose.”
- The center explains that the majority of sinonasal tumors arise in the maxillary sinuses, found on either side of the nose in the cheekbone area, or in the ethmoid sinuses, which is located between the eyes near the bridge of the nose.
- As for the type of cancer Hooks has, research published in the peer-reviewed journal “Cancers,” SMARCB1 (INI-1)-deficient sinonasal carcinoma “is a rare but locally aggressive malignancy which usually presents very late with invasion into the orbits and intracranium, and compression of adjacent cranial nerves and their branches at diagnosis, and has a poor survival outcome.”
Hooks recently spoke with WFTS Tampa Bay about his SMARCB1 deficient sinonasal carcinoma (SDSC) diagnosis, the symptoms leading up to it, and how he’s urging other veterans like himself to push for answers when it comes to their health.
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He further explained to the new outlet, “I’ve been grinding my teeth since I was a kid, maybe I’m grinding my teeth at night. I’ve never had a cavity.
“Initially, they thought well we don’t see anything wrong with your teeth.”
Hooks, who underwent three root canals (which he claims he didn’t need) and one tooth extraction soon after his symptoms arose, still had pain for months after the procedures.
Since his pain didn’t go away, a return visit to his oral surgery led his doctor to do a biopsy following additional tooth extractions, which led to his cancer diagnosis in September 2023.
Hooks, who retired in June 2022 after working as a chemical officer, explained to WFTS, “It’s a rare form of cancer, less than 200 cases is what they told me… I thought I was a healthy guy. I work out. I eat right.”
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To treat the rare for form of cancer, Hooks underwent surgery to remove half of his palate one year after his symptoms became apparent, followed by chemotherapy and radiation.
Now he’s urging other veterans to “get your checks, your annual checks and if you have anything out of the ordinary, don’t ignore it.”
“Go to the doctor and get checked,” he insisted.
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Hooks, who praises his loving wife Debbra Hooks for her ongoing support amid his cancer journey, noted that he will continue to have followup scans and appointments to “make sure there’s no reoccurrence.”
A GoFundMe created by Debbra, which has since raised nearly $20,000, reads, “I am reaching out to you today on behalf of my husband Brian who retired from the Army with over 25 years of service, proud member of Omega Psi Phi fraternity who has recently been diagnosed with an extremely rare form of cancer called SMARC B1 Deficiency Sinonasal Carcinoma.
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“This aggressive and uncommon cancer has turned our world upside down, but with your help, we are determined to fight back with all our strength and hope.”
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She continued, “Brian underwent a challenging surgery on November 7th followed by intense rounds of chemotherapy and radiation treatments. While he has shown incredible resilience and courage throughout this difficult journey, we know that there is still a long road ahead.
“The treatments have taken a toll on his body, and we are now exploring other options for treatment and short-term travels to MD Anderson in Houston Texas for better care and resources that could potentially improve his quality of life and support our family during this trying time. He is currently suffering from truisms and has limited mobility in his jaw, making eating very difficult.”
Understanding Sinonasal Cancer
The American Cancer Society describes nasal cavity and paranasal sinus cancers as types of head and neck cancers, and depending on where the cancer develops will determine the type of cancer.
“Nasal cavity cancers start in the opening behind the nose and paranasal sinus cancers start in the air-filled spaces in the skull around or near the nose,” the ACS explains.
According to NY Langone Health’s Perlmutter Cancer Center sinonasal cancer “develops in the nasal cavity, which is the space behind the nostrils, and the paranasal sinuses, the air-filled cavities on either side of the nose.”
The center explains that the majority of sinonasal tumors arise in the maxillary sinuses, found on either side of the nose in the cheekbone area, or in the ethmoid sinuses, which is located between the eyes near the bridge of the nose.
“Rarely, tumors form in the frontal sinuses, located above the brows and near the center of the forehead, and the sphenoid sinuses, which sit farther back in the head near the optic nerve, which runs from the eyes to the brain,” the center adds.
The types of sinonasal cancers can vary, with squamous cell carcinoma being the most common type, Other types of sinonasal cancers include:
- Adenocarcinoma
- Adenoid Cystic Carcinoma
- Mucosal Melanoma
- Esthesioneuroblastoma
- Lymphoma
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Meanwhile, Brigham and Women’s Hospital, notes that a variety of tumors can develop in the nose or sinuses, also including:
- Inverted papillomas
- Transitional cell carcinoma
- Neuroblastoma
- Sarcomas
- Plasmacytoma
- Giant cell tumor
- Metastatic carcinoma
- Sinonasal undifferentiated carcinoma (SNUC)
As for what causes sinonasal cancers, Brigham and Women’s Hospital explains, “There are several identified causes for sinonasal malignancies. Exposure to industrial environmental fumes from nickel refining process, chromium compounds, wood dust, leather tanning can cause certain types of sinonasal cancers. Tobacco smoke also can cause nasal cancers.
“Certain Human Papilloma Viruses (HPV) are associated with various types of benign and malignant tumors of the sinonasal cavity. Prior irradiation for other cancers has also been associated with the development of a sinonasal cancer.”
As for the type of cancer Hooks has, research published in the peer-reviewed journal “Cancers,” SMARCB1 (INI-1)-deficient sinonasal carcinoma “is a rare but locally aggressive malignancy which usually presents very late with invasion into the orbits and intracranium, and compression of adjacent cranial nerves and their branches at diagnosis, and has a poor survival outcome.”
“So far, less than 200 cases have been reported. The optimal treatment strategy for this rare but intractable malignancy is yet to be determined,” the study.
Pushing For A Correct Diagnosis
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
As a patient, if you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.
Advocating for Yourself While Navigating the Medical World
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” he said.
Dr. Murrell says not every patient will “fit into” the mold, so it’s important to “educate yourself and be your own health care advocate.”
“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. Murrell said. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
Leading Experts Urge Us to Be Proactive
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told us in a previous interview, “because finding a doctor who is up to the latest of information is important.”
RELATED: Second (& Third) Opinions Matter When Deciding Between Surgery or Radiation
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options. Also, in some instances the specific course of treatment is not clear cut. That’s even more reason why understanding the potential approaches to your disease is crucial.
At the National Cancer Institute, there is a patient referral service that will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.
Cancer Research Legend Urges Patients to Get Multiple Opinions
Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. “So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.
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Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer
- You have a rare type of cancer
- There are several ways to treat your cancer
- You feel like your doctor isn’t listening to you, or isn’t giving you good advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
- Your insurance company wants you to get another medical opinion
- Your cancer isn’t improving on your current treatment
Bottom line, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to take control of your health.
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.
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