Understanding Brain Tumors & The Importance of Second Opinions
- Lucy Younger, 23, is sharing her brain tumor and thyroid cancer stories to remind others that cancer can happen at any age and the importance of being your own health advocate.
- She was 18 years old when she began having seizures and episode of passing out, which doctors ultimately dismissed as from her being anxious and partying more than she should. It would be until after she started college in London that her symptoms worsened, which consisted of her seeing things that don’t exist, like pink elephants, and a salty bacon taste in her mouth.
- Brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO).
- General symptoms of a brain tumor 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.
- 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.
Despite her concerns, her doctors told her she was anxious, depressed, and having panic attacks, and put her on antidepressants. But after Googling her symptoms, she suspected she had a tumor on her temporal lobe. Two years later, after passing out and being dismissed by her doctor once again, she visited her local pharmacist, who thankfully referred her to get an MRI scan—which revealed she had a brain tumor.
Read MoreIn Younger’s case, it’s good she didn’t listen to her doctor who initially told her after the incident when she passed out, “Young girls like you don’t get brain tumors so you shouldn’t worry.”View this post on Instagram
Younger wrote in a first person story for Metro UK, “Half an hour after the scan, I was told that the brain tumor I was ‘too young’ to have was residing in my right temporal lobe, and I would need a craniotomy, an operation in which part of the bone from my skull would be removed, before the tumor did any more damage.
“In that moment I didn’t feel shock or sadness – just relief. This ordeal was over. I no longer had to prove myself to doctors and I wasn’t going crazy; I was right that there was something wrong, and I was not the hysterical woman I’d been painted as. ”
She continued, “Over the next few weeks, fear set in. Fortunately I was in the hands of a great neurosurgeon and four months after my diagnosis, I went through an intense five hours of neurosurgery, which left me with short-term memory loss, temporal lobe epilepsy and other neurological issues. I was kept on epilepsy medication and a lot of pain relief, and underwent MRI scans every six months to check if the tumor was growing back.”
Younger recounted moving back to her parent’s home in Newquay to take a year off from school to recover, but with assistance from her tutors and medical team she was able to obtained her English degree in 2022, and then embark on getting a Master’s degree in October of that year.
But two years later, she started feeling sick, with flu-like symptoms, a persistent dry cough, and constant fatigue. She even stopped drinking and changed her diet.
It wasn’t until she started having difficult swallowing and felt a “choking” sensation that she grew more concerned.
She wrote in the Metro UK article, “Still, I did not think too much of it – it had been going on for so long, and my doctor told me I was ‘hormonal and anxious.’
“On a return visit, he asked if I could have a sexually transmitted infection (STI),” she explained. “I was 23 years old, having already had a brain tumour, now begging a male doctor to take me seriously, again – it was surreal. How had I got to this point?”
View this post on Instagram
It wasn’t until she went to a different doctor’s office that she was urged to get blood tests and an ultrasound, which revealed a cyst that she later learned was thyroid cancer and unrelated to her benign brain tumor. Now she’s awaiting her second surgery.
She continued, “In the UK we are incredibly lucky to have the NHS, and the GP that I have now is incredible, but it should not have taken four different practices, trips to A&E and over three years in total to be diagnosed with a brain tumor and cancer when I had signpost symptoms for both.
“Twice, my symptoms were brushed off and I was misdiagnosed because of my age and, I believe, my gender.”
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Younger aims to understand why “women are at the forefront of unconscious bias around their health.”
Younger concluded, “I want my story to be a reminder to other young people and GPs that, no matter our age or gender, we shouldn’t be dismissed as either invincible, or hormonal, careless 20-year-olds. We know our bodies and we deserve to be listened to.
“The change starts with women being treated as more than just their hormones and mental health – and there is certainly no such thing as being ‘too young’ to have cancer. I’m living proof of that.”
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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 estimated that 24,810 adults (14,280 men and 10,530 women) in the United States would 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.
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There are many different types of brain and spinal cord tumorsand 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.
Meanwhile, 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.
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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.
Thyroid Cancer Symptoms
Thyroid cancer is a disease that begins in the thyroid gland, which is at the base of the neck. The cancer will often present itself as a large bump (tumor) in the neck. It remains unclear what causes the disease. Some symptoms of thyroid cancer can be mistaken for a common cold.
Dr. Scott Strome, a head and neck cancer surgeon who is currently the dean of the University of Tennessee College of Medicine, and previous chair of head and neck surgery at the University of Maryland School of Medicine, explained thyroid cancer in an earlier interview with SurvivorNet.
“We’re now able to detect thyroid disease, thyroid cancers, much earlier than we used to be able to,” Dr. Strome says. “We tend to see it predominantly in younger women, but it can occur in both men and women. In most cases, I tell my patients that, ‘Your thyroid cancer is a barnacle on the ship of life.’”
Dr. Strome suggests finding an experienced thyroid expert for treatment.
“Folks who have thyroid cancer, they need to go to a really experienced thyroid setting and have folks who really understand the disease. Those are for the most indolent type of thyroid cancers, called papillary,” he explained.
“Thyroid cancer is a pretty interesting disease, because papillary is a really indolent cancer. On the other end of the spectrum, you have what’s called anaplastic thyroid cancer, which may be one of (if not the) most aggressive cancers that we see. So it’s a whole spectrum of disease.”
Treatments for thyroid cancer can include surgery, hormone therapy, radioactive iodine, radiation, and chemotherapy.
Symptoms of thyroid cancer include the following:
- A lump in the neck, sometimes growing quickly
- Swelling in the neck
- Pain in the front of the neck, sometimes going up to the ears
- Hoarseness or other voice changes that do not go away
- Trouble swallowing
- Trouble breathing
- A constant cough that is not due to a cold
“You Are Your Own Best Advocate”
“Most people have no discrete symptoms the majority of cases now are found incidentally,” Dr. Allen Ho said in a previous interview with SurvivorNet.
“However, a sizable number of people may first discover their cancer when they feel a bump on their neck. Other possible late symptoms include problems swallowing, the sensation of something in their throat, neck compression when laying flat or voice changes.”
The good news is that many of these possible symptoms, including lumps in the thyroid, are both common and commonly benign but it never hurts to ask your doctor.
Chances of cancer recovery increase significantly with early detection, so it’s important to address any warning signs of thyroid cancer, or any cancer for that matter, with a medical expert swiftly.
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.”
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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.
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At the National Cancer Institute, there is a patient referral service that wil “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.
How Common Are Misdiagnoses?
Lucy Younger’s story reminds us of a shocking study about how frequently patients are misdiagnosed. According to the study, published in BMJ, an estimated 371,00 people in the U.S. die every year due to a misdiagnosis and around 424,000 people are permanently disabled. The study said an estimated 800,000 Americans in total suffer “serious harm” due to misdiagnosis every year.
The researchers for this particular study focused on “serious harm,” but also noted that less detrimental misdiagnoses were likely occurring on an even grander scale. According to STAT, authors believe the number of diagnostic errors that happen in the U.S. each year could be between 50 and 100 million.
Despite these shocking numbers, most misdiagnoses do not have dire consequences.
Advocating for Yourself While Navigating the Medical World
David Newman-Toker, the lead author of the paper, told the outlet, “The risk level just walking through the door in the doctor’s office that something horrible is going to happen to you because of a diagnostic error is actually quite low.”
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.
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.
Be Pushy, Be Your Own Advocate, Don’t Settle
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.”
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Questions for Your Doctor
If you find yourself considering seeking a second or third medical opinion, here are some questions to kickstart the conversation with your doctor:
- Is there any other testing available for the type of cancer I have?
- Are there any other treatment options available for my type of cancer?
- Why or why do you not recommend those other options?
- I would like to seek a second opinion on my diagnosis and treatment options. Is there another doctor or facility you recommend?
- Do you want the second opinion to be sent to you?
- Can I have a copy of all my records that I can share with this second physician?
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.