Raising Awareness About Brain Tumors
- A 48-year-old mother from England, Sue Hitchmough, thought she was suffering from an ear infection before she was diagnosed with low-grade acoustic neuroma, a rare type of brain tumor.
- Hitchmough was surpised how little is known about brain tumors, so she decided to share her story to raise awareness and inspire others in their own recoveries.
- Acoustic neuromas are benign brain tumors that can cause symptoms like hearing loss (particularly in one ear), ear fulness, and balance problems (vertigo), according to Johns Hopkins Medicine. Treatment may include surgery, radiation and observation.
- In rare cases, acoustic neuromas may be hereditary if a person has a genetic condition known as neurofibromatosis type 2 (NF2). If you have a family history of cancer, it’s a good idea to speak to your doctor about genetic testing.
Sue Hitchmough originally sought medical attention when she began experiencing the hearing loss and vertigo, both of which can be symptoms of acoustic neuroma, according to Johns Hopkins Medicine. Her doctor suspected she had an ear infection and prescribed antibiotics, but there was no improvement. Hitchmough told Coventry Live she tried to continue explaining away her symptoms.
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In early 2022, the tumor was removed surgically, and Hitchmough had a tube implanted in her brain to drain the fluids that built up due to the tumor. The treatment left her deaf in one ear, unable to cry out of one eye, and only able to taste on one side of her mouth.
The ordeal made her realize just how little people know about brain tumors, and now, she advocates for awareness.
“I lost my aunt to the disease when I was a young teenager. She was 40. I wondered if it could be hereditary, and if so, were my children at risk?” Hitchmough said. “When I asked, the consultant advised they didn't know what caused them. It was just 'one of those things.’ I did my own research into brain tumors and was alarmed with how little is known about the disease.”
To connect with others going through similar struggles, the mom made an Instagram account where she provides candid accounts of what life is like in recovery. You can check out her journey @sue_hitch.
“An intense week at work, early training session, late night and early footy match seemed to have caught up with me today. My brain and body is exhausted!,” she wrote in a recent post. “This is my new 'normal' way of life which I've learnt to embrace, I've realised that it's OK to rest and sleep as that's when my brain recovers.”
What Are Acoustic Neuromas?
Acoustic neuromas are low-grade brain tumors (low-grade means they tend to grow slower). According to Johns Hopkins Medicine, they most commonly affect people in their 40s and 50s and are considered benign (non-cancerous). They are primary brain tumors, which means they begin in the brain and have not spread from a cancer anywhere else in the body.
Even though acoustic neuromas tend to be slow growing, it is important to be aware of symptoms, which can include:
- Hearing loss (particularly one-sided, or unilateral, hearing loss)
- Ear fulness (may feel like water in the ears)
- Noise in the ear (hissing, buzzing tone)
- Balance problems/vertigo
- Numbness in the face
- Facial twitching/weakness
- Issues swallowing
- Headache/pressure
Genetic Testing to Assess Cancer Risk
Like many people facing a scary diagnosis, Hitchmough wondered if the brain tumor was something she was more susceptible to due to a family history. The large majority of acoustic neuromas are not hereditary, according to Johns Hopkins Medicine. People who have a genetic disorder called neurofibromatosis type 2 (NF2) may inherit a tendency to develop these tumors. However, these patients represent only 5% of all patients with this specific type of brain tumor.
There are other types of cancer, like breast and ovarian, that people very well may inherit a risk of developing and if you have a family history of cancer, it’s a good idea to speak to your doctor about genetic testing.
Dr. Ophira Ginsburg discuses who should seek genetic testing to assess cancer risk.
“We encourage only those who have a family history to really get that kind of service [genetic testing] if you need it,” Dr. Ophira Ginsburg, a medical oncologist and Director of the High-Risk Cancer Program at NYU Perlmutter Cancer Center, told SurvivorNet in a previous conversation. “I would say that if you have anyone in your family who was diagnosed with a very rare cancer, or if you have a strong family history of one or two kinds of cancer particularly breast and ovarian but also colon, rectal, uterine and ovarian cancer … that goes together in another cancer syndrome called the Lynch Syndrome.”
Dr. Ginsburg also notes that if you have a close relative, like a parent or sibling, who was diagnosed with cancer at a young age, like their 30s or 40s, that you may want to discuss genetic testing with your doctor as well.
If you are considering getting genetic testing, experts recommend meeting with a genetic counselor first to determine exactly what sort of testing you should undergo. This is complicated stuff, and you want to make sure you’re taking the right path with a knowledgable person by your side.
“Genetic counselors have specialized training in order to figure out what genetic testing might be the most useful for you and your family,” Rachel Webster, a genetic counselor at MD Anderson Cancer Center, told SurvivorNet.
“Unfortunately, genetic counselors are not always easily accessible. You may find them in your larger cities or at major medical centers. They are popping up at more and more community hospitals across the country … If you look at the National Society of Genetic Counselors website, they have options for finding a genetic counselor near you, as well as finding telehealth options for genetic counselors who may be able to talk to you on the phone or online.”
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