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READ MOREPublished on February 19, 2025 in Educational Resources
Each year, more than 67,000 Americans will be diagnosed with a benign (non-malignant) brain tumor. Often, when people hear the words “benign brain tumor,” their immediate reaction may be relief that “at least it’s not cancer,” assuming that a benign tumor means no severe symptoms and no lasting impact. But for those living with a benign brain tumor, the reality can be far more complicated. Benign does not necessarily mean harmless. Benign does not mean easy. Benign is not fine.
“Benign does have the connotation of being harmless or something that’s not going to cause anything bad to happen,” said Julia C., who was diagnosed with a benign brain tumor in 2021. “When I think about brain tumors, in particular, I think of it as a dichotomy that it should be cancerous or noncancerous — not benign or malignant —because there’s no way for something to be growing in your brain that’s not supposed to be there and have it be harmless.”
A benign brain tumor involves abnormal growths in the brain that can disrupt essential functions. These tumors can press on critical areas, causing debilitating symptoms, long-term complications, and a significant decline in quality of life. Many patients struggle with symptoms that affect their physical abilities, cognition, emotions, and social interactions.
Here are 13 realities that many people with benign brain tumors experience.
A common concern among those in the brain tumor community is that the general public does not understand the long-term ramifications of a benign brain tumor. Many patients hear comments like, “How lucky you must feel that it’s not cancer!”
“Just because it was benign doesn’t mean it wasn’t bad,” said Lisa G., who had subependymal giant cell astrocytoma. “I was experiencing intermittent vision loss, lethargy, debilitating headaches, mood swings, flu-like symptoms (hot/cold), poor concentration, and focus.”
Once treatment is complete and the visible signs — such as surgical scars or hair loss — fade, patients often feel like they’re living with an invisible illness. Their network of contacts expects them to be back to “normal,” even when their challenges might persist.
Heather O. said, “I have several deficits from the tumor, the surgery, and complications. They’re invisible to others, and the comments started to depress me because my healing plateaued: ‘Oh, you look great, you sound great, you’re walking fine, I can’t even tell you had a tumor. You’re so lucky it wasn’t malignant. At least it wasn’t cancer. Oh, it was just a meningioma.’”
For many patients, managing a benign brain tumor involves treatment, which may include surgery, radiation, and/or medication. While serious complications are rare, every patient’s journey is unique, and recovery can look different for everyone.
“Every comment minimized what I went through after my meningioma diagnosis — 17 days in ICU, two months of inpatient therapy at a neuro rehab facility, 70+ staples, a scar, plus infection,” Heather said. “Relearning to walk, talk, and just think, plus seizures.”
For many with non-malignant brain tumors, a craniotomy is scheduled to remove as much of the tumor as possible. Brain surgery is a major procedure with varied risks and potential complications, depending on the tumor’s location.
For Gabe R., whose craniopharyngeal tumor was pressing against his optic nerve, the biggest concern was whether he would lose his vision. After surgery, he was relieved to still be able to see clearly, but his recovery took months.
In 2019, Andi R. underwent an 8-hour craniotomy to resect her meningioma tumor that was the size of a tangerine.
“They removed my sinus system, so I forever lost my sense of smell and taste,” Andi said. “I have permanent facial nerve damage and scar tissue on my scalp where my hair will not grow back.”
The sudden change after an unexpected surgery can leave people trying to process the lasting impact of their craniotomy.
“I was left with bilateral facial paralysis as a result of my surgery to remove choroid plexus papilloma tumor,” said Renzo M. “I wish people knew more about benign tumors and the dangers they could potentially present.”
Some benign brain tumors require radiation to shrink or control growth of the tumor. Radiation brings its own risks and side effects, including fatigue, hair loss, cognitive changes, and more.
Chaka C. experienced the expected side effects after beginning radiation as part of her meningioma treatment. Unfortunately, Chaka also came down with stroke-like migraine attacks after radiation therapy (SMART) syndrome — a rare reaction to radiation of the brain — one year after completing radiation, which added another layer of complexity on top of word-finding challenges and ongoing fatigue.
Many patients rely on medications, such as anti-seizure drugs or steroids, to manage their symptoms. While these medications may be necessary, they can come with side effects.
Julia’s biggest concern after doctors discovered her brain tumor was her anxiety over brain surgery. It wasn’t until after her craniotomy that she realized that, in her case, some symptoms, such as her seizures, were going to be a long-term concern.
“I wish someone had been more upfront about the challenges that come with even benign tumors,” Julia said. “In my mind, the tumor was going to be removed, like having your wisdom teeth pulled, and I would recover from surgery, and then life would go on as normal. I had no idea the plethora of medical, psychological, and physical effects that I would feel long after the surgery was over.”
Many patients experience lasting life-altering changes due to their tumor’s location, surgery, or treatment side effects.
Mobility challenges are common for patients with benign brain tumors, especially when tumors or surgeries impact the brain’s motor function. Some patients experience paralysis, balance issues, or difficulty walking, requiring physical therapy or assistive devices. Even when mobility improves over time, lingering weakness or coordination problems can make daily activities like going up the stairs more difficult.
“Coordination and balance was a huge issue early on for me,” said Eric Galvez, a former physical therapist living with meningioma. “They had me do a lot of balance and coordination exercises, like throwing a ball and catching it. This is recovery from brain surgery — not a total knee or hip surgery — so you’re going to have to relearn a lot of things.”
Karen’s dad underwent an 8-hour surgery to remove as much of his hemangioblastoma as possible. He suffered significant nerve damage post-surgery and is largely paralyzed on one side and unable to breathe on his own.
“Benign has a new meaning to me, as it can include severe disability and paralysis,” Karen said. “The tumor was on my dad’s right side near his ear. He can’t hear from that ear, his vision is affected, and he’s paralyzed completely on the right side.”
Patients with benign brain tumors may experience vision or hearing difficulties depending on the tumor’s location.
Tumors near the optic nerve can cause blurred vision, double vision, or even permanent vision loss.
“My tumor was wrapped around the optic nerve and now wrapped around the carotid artery,” said Carrie E., whose meningioma tumor is behind her left eye. “My vision will never improve, and my eye still protrudes due to the pressure behind it.”
Similarly, tumors affecting the auditory nerve or brainstem can lead to hearing loss, tinnitus (ringing in the ear), or balance issues, sometimes requiring hearing aids or other adaptive strategies. Vestibular schwannoma, a benign brain tumor also known as acoustic neuroma, is a type of benign tumor that “develops from the balance and hearing nerves supplying the inner ear,” according to the National Institutes of Health (NIH).
“I had adapted to severe hearing loss that first appeared in high school before becoming completely deaf by the time I was diagnosed [with acoustic neuroma],” said Kayla S.
These issues can impact communication, employment, and overall quality of life, yet many people assume they are minor inconveniences. For those who still have their complete vision and hearing, they may find themselves more sensitive to light and sound.
Ana H., who was diagnosed with central neurocytoma, keeps foam earplugs around her home, car, coat pockets, purse, and office to ensure they are available whenever she needs them to manage her sound sensitivity.
One of the common first symptoms of a brain tumor is a seizure, which is a sudden, uncontrolled electrical disturbance in the brain.
“My diagnosis was a surprise to me,” said Annie M., who was diagnosed with meningioma. “After suffering two grand mal seizures one morning and being brought to our local hospital via ambulance, it was discovered that I had a brain tumor. My seizures were so bad that I thrashed, bit my tongue, and turned blue prior to arriving at the hospital.”
Seizures can vary in severity and duration, ranging from brief lapses in awareness (focal seizures) to full-body convulsions (tonic-clonic seizures).
A journal article in Seizure stated that “seizures may occur either as an initial symptom that leads to the diagnosis of the tumor (seen in about 30–50% of patients) or during the course of the disease (seen in 10–30% of patients).”
According to the Handbook of Clinical Neurology, seizures are most common in glioneuronal tumors, such as gangliogliomas and dysembryoplastic neuroepithelial tumors (DNETs), and less common in meningiomas.
The unpredictability of seizures can lead to anxiety, employment challenges, and restrictions on daily activities such as driving. For some, seizures become a chronic condition requiring lifelong medication and lifestyle adjustments.
For example, Julia’s focal seizures continued after surgery, and she was diagnosed with epilepsy about a year after her craniotomy.
“I have to take anti-convulsant medication,” Julia said. “Anti-convulsants are kind of notorious for messing with your mood, your appetite, and your sleep. I do have to deal with the side effects of those medicines in addition to still sometimes having flare-ups of these seizures.”
Benign brain tumors located near the pituitary gland or hypothalamus can disrupt hormone production, leading to imbalances that affect metabolism, growth, stress response, and reproductive health. This disruption may cause conditions like hypothyroidism, adrenal insufficiency, or diabetes insipidus, requiring lifelong hormone replacement therapy or other medications to manage symptoms.
Even though the tumor itself is noncancerous, its impact on the endocrine system may significantly affect a patient’s quality of life.
Gabe’s surgery to resect two benign tumors also resulted in the removal of his pituitary gland because it had been completely destroyed.
“Because they took out my pituitary gland, I’m adrenal insufficient, so my body doesn’t make any cortisol,” Gabe said. “I have to take synthetics because my body can’t produce the cortisol that’s needed for me to adapt if something traumatic were to happen. I also have to wear a medical bracelet.”
A benign brain tumor can have a profound impact on mental health. Depending on its location, the tumor may affect brain regions responsible for mood regulation, leading to anxiety, depression, or personality changes.
“After having surgery, my anxiety and depression did get worse,” said Jennifer A., who was diagnosed with an epidermoid tumor. “It’s been eight years since my surgery, and still, it’s a constant roller coaster I deal with. My mood gets low, and I feel so bad about myself. I just don’t feel like the same person since my surgery.”
Additionally, the stress of living with a brain tumor — coping with symptoms, treatment, and uncertainty — can contribute to emotional distress, impacting overall well-being and quality of life.
“The journey doesn’t end when surgery is over and your head is healed or when radiation is over and your hair has grown back,” Chaka shared. “So many people have gone through a traumatic experience physically and emotionally. I didn’t realize how much I’d been through until it was ‘over,’ and I was just left processing it. Even if your body has healed, emotionally, you may not have been completely healed.”
Some patients are diagnosed with post-traumatic stress disorder (PTSD) after their experience, and many people deal with scanxiety surrounding ongoing follow-up medical imaging.
“I was diagnosed with PTSD six to eight months after surgery, so I have a ton of medical anxiety that I still deal with,” Julia said. “Even being almost three years away from surgery, I have a difficult time, and going to doctors’ offices is still really triggering for me. There’s a lot of anxiety that goes into it, and then there’s just the ongoing appointments. I still go all the time and get MRIs done, get IVs put in, and do all the testing that goes with following it up. So despite the fact that it was benign, it does still have effects on my life, literally every single day.”
Some individuals may struggle with feelings of survivor’s guilt, especially when they know others who are facing more aggressive diagnoses or who have lost their lives to the disease.
“Even though my diagnosis was a complete shock to both me and my family, my journey overall was a good one, and I feel incredibly blessed for it,” Annie said. “But, even when your story has one of the best endings, you can’t help but think, ‘How come? Why was I so lucky when so many other people are not?’”
They may feel guilty for receiving a “better” diagnosis while still dealing with their own significant struggles, including surgeries, symptoms, and long-term effects.
“After a 5-week recovery, I returned to work both times,” said Karen K., who had two craniotomies to address meningioma tumors. “I looked the same. I acted the same. I was running 12 miles a weekend. Opening a business. If I didn’t tell you, you’d have no idea seven silent monsters used to live in my head. That is both a blessing and a curse. But where do I fit in? I joined this community of brain tumor survivors, but I didn’t feel worthy. I bounced back, but the mental and emotional toll on myself and my husband has been more lengthy.”
Some may even downplay their pain because they feel they don’t have the right to complain. But the truth is, every situation is unique. Every person living with a brain tumor — benign or not — deserves support.
Living with a benign brain tumor can change relationships in unexpected ways. Friends and family may not understand the severity of the condition, leading to frustration or a lack of support.
“Even brain tumors that are benign can still have a really profound and lifelong impact,” Julia shared. “One of the things that I found difficult was when you first have your diagnosis and surgery, you have so many people supporting you because you’re actively going through it. But I found that as time has gone on — other than my really close circle — people don’t even think to ask. They just assume that because it’s been so long, everything’s all good. People don’t realize the amount of stuff that I still have to deal with, even being this far out. I wish more people understood the long-term impact even benign brain tumors can have and that people still need support even years down the line.”
Some patients find that their social circles shrink because their friends are unsure how to act around them, especially if they can no longer share common activities.
“I think the hardest part I felt is I have friends who don’t even talk to me anymore,” said Trish. “I don’t know if they just feel uncomfortable or they don’t know what to say.”
Benign brain tumors can significantly impact cognition and speech, depending on their location and size. Tumors in areas responsible for language processing, such as the frontal or temporal lobes, can cause difficulty finding words, slurred speech, or trouble understanding conversations.
Chaka’s return to work was challenging due to her word-finding difficulties. Struggling to find a word is analogous to when someone knows the person’s name but can’t think of it at the moment.
“I’ve improved with word finding, but I haven’t been able to get back to my old self,” Chaka explained. “I’m afraid of saying the wrong word. What if it’s not the right word, or I say it wrong?”
Cognitively, patients may experience brain fog, memory loss, trouble concentrating, or slower processing speeds, which can make everyday tasks, work, and social interactions more challenging.
“Five years later, I suffer from some short-term memory loss, speech aphasia, and trouble with numbers,” Annie said.
Even after treatment, these issues can persist, requiring speech therapy or cognitive rehabilitation to help manage the effects.
In some cases, a benign brain tumor can make it challenging to keep a patient’s job they held before their diagnosis or maintain steady employment. Frequent doctor visits, surgeries, and recovery periods can interfere with work schedules, and cognitive or physical difficulties may prevent patients from performing their job duties.
Nakeisha C., who was diagnosed with meningioma, said, “I couldn’t go back to my job as an educator, and I actually had to change careers so that I could be in a safer work environment.”
The financial burden of medical bills combined with lost income can be a lot to navigate.
Fatigue, which is common among people living with brain tumors, is a persistent sense of exhaustion that doesn’t go away with rest.
“I still have fatigue every day,” Chaka said. “I try not to say I’m tired all the time because I feel like a broken record in front of my kids. I frequently remind myself of a saying I came up with, ‘Give yourself a little grace, as we are all living this life for the very first time.’”
Many patients report that the word “benign” minimizes their experience. Benign brain tumors can come with significant challenges that affect every aspect of a person’s life.
Jennifer laments, “I wish people didn’t always ask, ‘Was it cancer?’ Then, when you say no, they automatically think everything is fine. I am not fine. I am not the same person I was before my surgery, and I would give anything to get back to how I was and felt before having the brain surgery.”
By highlighting the challenges faced by individuals with benign brain tumors, we can drive greater awareness and ensure they receive the support, resources, and understanding they deserve.
I love the quote ‘benign is not fine’ because I myself have had a benign brain tumor. There’s a lot that comes with that. My only option for treatment was brain surgery, and it was a big deal. There are still some post-op things that I’m dealing with a year and a half out from surgery — speech dilemmas, balance issues, anxiety, and short-term memory loss. It’s still a challenge every day to get through with visual disturbances and migraines. I’m on medications daily. Even though it was a benign brain tumor, and it’s no longer in my body, there’s still a lot to keep on top of.
Nakeisha C.
Patients and caregivers are our top priority. National Brain Tumor Society equips patients and their care partners with the tools and resources they need to navigate every step of their unique health care journey — from understanding their diagnosis and building their medical team to making decisions about treatment, including accessing clinical trials and palliative care.
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