Woman, 22, Dismissed Her Constant Headaches as ‘Burnout’ After Prescribed Migraine Medicine Didn’t Help– It Was a Brain Tumor: How She Finally Got the Diagnosis She Needed

Kelly, who previously had a blood test reveal high levels of prolactin (a potential indicator of a brain tumor) but was informed everything was normal with further testing, told the Liverpool Echo, “I honestly thought it was something hormonal because my mum suffers with migraines, so I just thought it was a normal thing.

“But then as time was going on, it literally wasn’t leaving me, this headache. It was like a pulsing in my head, like a pressure. I didn’t know what to do because no one was listening to me, the doctors weren’t listening to me,” Kelly explained. “They just kept passing it off as different things.”

She continued, “I felt like I was going crazy because I’d read so much online, which people tell you not to, but when medical professionals aren’t listening to you, the internet was the only thing that I could rely on and turn to at that moment in time. Then I started to lose my vision.”

Kelly ended up reaching out to her doctor through an electronic consultation before her trip to Lanzarote in December. She suspected the pain she was feeling was a side effect of her migraine medication.

“My eyesight was dreadful at this point, literally like double vision. I had this pain at the very back of my ear, and I didn’t know what it was,” she recounted, later likening the symptoms to burnout.

However, when she returned home from her vacation, her doctor referred her to an ophthalmologist. At the appointment, Kelly claims she “knew then that something wasn’t right” when her mom was called into the room after the doctor looked at her eyes.

“It’s been left too long, you need to go to the hospital now,” Kelly and her mom were informed. They then rushed to an area hospital where Kelly underwent a CT and was diagnosed with a brain tumor.

Kelly felt relief when she was told of the tumor. She explained, “Someone had finally told me why I’ve been feeling the way out for the past few months. I think the diagnosis is still sinking in now.”

Just three days after getting diagnosed, doctors were able to successfully remove 95% of Kelly’s tumor.

Kelly, who continues to get routine scans and eye tests, hopes the tumor doesn’t return, as there is a “zero to 14% chance of it potentially coming back.”

She remains optimistic regardless, adding, “You just have to take the good with the bad. I’m still alive, most of it’s gone, so that’s the main chunk of positivity I’ve got to take from it.”

With support from a psychologist and support worker, thanks to the Teenage Cancer Trust, and a Brain Tumour Charity support group, Kelly is returning to normal on what she admits is “a long road to recovery.”

Now she’s stressing the importance of being your own advocate and pushing for answers.

“If you know in yourself that you’re not 100%, just keep going back and keep asking the questions,” she concluded. “Keep approaching different people and just seeing what they say, because at the end of the day, no one knows your body as best as you do.”

Understanding Brain Tumors

Brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO). In 2023, the ASCO estimates that 24,810 adults (14,280 men and 10,530 women) in the United States will be diagnosed with primary cancerous tumors of the brain and spinal cord.

The central nervous system consists of the brain and spinal cord and acts as the main “processing center” for the body’s nervous system. The normal function of the brain and spinal cord can become difficult if there’s a tumor putting pressure on or spreading into normal tissue close by.

One Survivor’s Advice for Taking On Brain Cancer

There are many different types of brain and spinal cord tumors—and some of which are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign, however, even these types of tumors can lead to serious problems.

Brain Tumor Symptoms

Symptoms of brain tumors, as a whole, are usually caused by increased pressure in the skull. This pressure can stem from tumor growth, swelling in the brain, or blockage of cerebrospinal fluid (CSF), the American Cancer Society explains.

General symptoms may include:

• Headache
• Nausea
• Vomiting
• Blurred vision
• Balance problems
• Personality or behavior changes
• Seizures
• Drowsiness or even coma

Additionally, MD Anderson Cancer Center notes that changes in the ability to smell can also be a sign of brain tumors, and, more specifically, “strange smells” can be a symptom of seizures, which can result from brain tumors.

It’s important to note that these symptoms are not exclusive to brain tumors. Still, you should always speak with your doctor if you’re experiencing any health problems.

Advocating for Your Health

Whether you are currently battling cancer or concerned that you might have it, it’s always important to advocate for your health. Cancer is a serious disease, and you have every right to push your doctors to investigate any possible signs of cancer.

And, as we saw in the case of Mel Kelly, it’s always crucial to speak up about any changes to your health and follow your gut instincts when you suspect something might be wrong.

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 Colorectal Cancer Center at Cedars-Sinai in Los Angeles, told SurvivorNet in an earlier 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 opened up about how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. However, that dismissal was erroneous.

Eventually, Knowles was diagnosed with metastatic breast cancer at 39 years old. She credits the experience for showing her the importance of listening to her body and speaking up when something feels wrong.

I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer

“I wanted my doctor to like me,” she admitted. “I think women, especially young women, are really used to being dismissed by their doctors.”

Deciding whether or not you actually have cancer depending on your possible symptoms is critical because early detection may help with treatment and outcomes. Obtaining various opinions is one way to make sure you’re getting the needed care and attention.

It’s also important to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and at times, it’s essential to talk with multiple medical professionals.

Dealing With Grief Amid Health Problems

Meanwhile, it’s normal to feel sad about changes in your life that might be brought on by a cancer diagnosis, as Mel Kelly has.

“Grief comes in waves,” Dr. Scott Irwin, a psychiatrist and Director of the Patient and Family Support Program at Cedars-Sinai’s Samuel Oschin Comprehensive Cancer Institute, previously told SurvivorNet. “They’re grieving the change in their life, the future they had imagined is now different.”

Some days can be harder than others, but Dr. Irwin says talk therapy is helpful so it’s important to reach out to your doctor, to a therapist or to support groups in your community.

Contributing: SurvivorNet Staff

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