Advocate for Your Health
- Lee Marsh, 54, is currently undergoing radiotherapy treatments for a glomus jugulare tumor at the base of his skull. He received his diagnosis earlier this year after initially thinking his sore throat was being caused by laryngitis.
- A glomus jugulare tumor is located in the part of the temporal bone in the skull that involves the middle and inner ear structures. Symptoms can include difficulty swallowing (dysphagia), dizziness, hearing problems or loss, hearing pulsations in the ear, hoarseness, pain and weakness or loss of movement in the face (facial nerve palsy).
- Being your own advocate can be key to getting a correct cancer or tumor diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
When the grandfather of four started losing his voice earlier this year, he assumed he was just having a sore throat. Lee tried over-the-counter medication for laryngitis, but voice only got worse. He also began having sharp pains down his neck and started struggling to swallow and eat.
Read MoreThe tumor has already caused irreversible damage to Lee’s vocal chords, but he’s now undergoing radiotherapy for treatment.
“My voice won’t come back it’s all irreversible,” he said. “It’s also been very difficult with food. I lost two and half stone [35 pounds] because I struggle to eat and I have to break my food down to very fine bits.”
Because Lee has to travel quite far for his treatments and pay for hotels, his niece set up a GoFundMe page to raise money as he navigates this physically and financially demanding time in his life.
“It’s taken so long for Lee to get a diagnosis after so many months,” his niece said. “We’re glad he’s got a final diagnosis and is moving forward, but he has to live with this for the rest of this life.”
What Are Glomus Jugulare Tumors?
According to Mount Sinai Health System, a glomus jugulare tumor is located in the part of the temporal bone in the skull that involves the middle and inner ear structures.
This tumor can affect the ear, upper neck, base of the skull and the surrounding blood vessels and nerves. Glomus jugulare tumors are rarely cancerous and usually do not spread to other parts of the body, but treatment may be needed to relieve symptoms. Thankfully, people who have surgery or radiation tend to do well with more than 90 percent of glomus jugulare tumor patients being cured.
This tumor usually develops later in life, around age 60 or 70, but it can appear at any age. Possible symptoms of this tumor include the following:
- Difficulty swallowing (dysphagia)
- Dizziness
- Hearing problems or loss
- Hearing pulsations in the ear
- Hoarseness
- Pain
- Weakness or loss of movement in the face (facial nerve palsy)
It’s important to note that these symptoms are not exclusive to glomus jugulare tumors. Even still, you should always promptly investigate any changes to your health with a medical professional.
Advocating for Your Health
Whether you are currently battling a tumor or cancer or worried there might be something wrong, it's always important to advocate for your health. You have every right to insist that your doctors thoroughly investigate any changes to your health.
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 Murrell, 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."
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
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.
Another 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.
Learn more about SurvivorNet's rigorous medical review process.