The Importance of Advocating For Yourself
- Hannah Lemanski, a 24-year-old paramedic from the U.K., discovered her headaches and changes in vision were due to a very rare brain tumor called a central neurocytoma (CN), by pushing for answers from doctors.
- Now she’s hoping to raise enough money for a much-needed surgery that insurance doesn’t cover, in hopes to have more of the tumor removed, as a recent scan showed it to be growing.
- According to the National Organization for Rare Disease (NORD), a central neurocytoma is a very rare brain tumor of young adults (over 100 cases reported worldwide). It is typically found in the lateral ventricles and occasionally in the third ventricle. “Symptoms are those of increased intracranial pressure: headache, nausea and vomiting, drowsiness, vision problems and mental changes.”
- Brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO).
- 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 ensure 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.
Lemanski, who is sharing her story in hopes of raising enough money for a much-needed surgery, has revealed she “kept on pushing” for answers after when her symptoms persisted for two months and her doctor initially dismissed what she was experiencing as a “lazy eye.”
Read MoreAbout three months ago, a followup scan revealed Lemanski’s tumor was beginning to grow again. Since then, Lemanski has chosen not to undergo conventional radiotherapy, and instead, a non-invasive radiosurgery called gamma-knife surgery, which the U.K.’s National Health Service (NHS) doesn’t cover, due to her tumor type.
According to Johns Hopkins Medicine, gamma-knife radiosurgery, also called stereotactic radiosurgery, is a type of radiotherapy treatment.
“Even though it’s called surgery, a Gamma Knife procedure doesn’t use incisions. It also isn’t a knife. Gamma Knife uses very precise beams of gamma rays to treat an area of disease (lesion) or growth (tumor). It’s most often used in the brain. The beams of gamma radiation send a very intense dose of radiation to a small area without a need to make an incision. Radiosurgery destroys cells so that they can’t grow. A lesion or tumor will shrink in size over time,” Johns Hopkins explains.
“Gamma Knife radiosurgery is called surgery because the end result is similar to removing a lesion with surgery. The beams of radiation are precisely focused to reach the lesion, with little effect on nearby healthy tissue. The Gamma Knife system is just one type of radiosurgery system. Gamma Knife is a brand name,” Johns Hopkins adds.
The procedure is one that’s led by a radiation oncologist and performed by a treatment team.
A GoFundMe set up for Lemanski, by her friend, which has since collected more than $20,000, explains how the selfless young woman underwent a successfully surgery in May 2023, shortly after her diagnosis, to remove 80 percent of the tumor.
“Hannah made an exceptional recovery and returned to the frontline as a paramedic in less than three months. Unfortunately during a routine scan early this year, it was discovered that the residual tumour is showing signs of regrowth,” the GoFundMe organizer writes.
“Doctors have confirmed that what remains of the tumor still needs to be treated, and the safest, most effective option is Gamma Knife surgery — a non-invasive, highly targeted form of radiotherapy that could finally stop the tumour from growing.”
Helping Patients Better Understand Brain Cancer
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- Novel Brain Cancer Treatment: Tumor Treating Fields (Optune Gio): What, How, Who, Why?
- Why a Second Opinion at a Brain Tumor Center Can Make All the Difference
Sharing the “devastating hurdle” Lemanski is now facing, the GoFundMe page continues, “Despite her medical team’s recommendation, the NHS [the U.K.’s National Health Service] has denied treatment based upon the fact NHS England does not commission funds for this treatment and her specific tumor type.
She now is waiting for an appointment for Gamma Knife Radiotherapy procedure, an expensive treatment as it would be done privately.
The GoFundMe page notes that the money raised will go toward the needed surgery costing more than $15,000 additional medical expenses, as well as travel and consultation costs.
Understanding Brain Tumors & Treatment Options For Brain Cancer
Brain tumors can impact a person’s brain function and overall health — but how much depends on their size, type, and location within the brain. Tumors that grow big enough and disrupt normal central nervous system functioning can press on nearby nerves, blood vessels, or other tissues. The disrupted central nervous system can present in various ways, making walking or maintaining balance difficult.
Brain tumors may be benign (non-cancerous) and malignant (cancerous). There are various types of brain tumors, with gliomas being the most common cancerous type of aggressive primary brain tumors.
What is a Glioma: Understanding Types & Standard of Care
Treatment options for brain cancer depend on a variety of factors, including the size and type of the tumor as well as the grade of the tumor.
RELATED: Understanding the Treatment Path for Glioma Patients
Surgery, radiation, and chemotherapy are options doctors use to treat brain tumors. Cancer warriors are encouraged to talk to their doctor about their situation and the best treatment options.
The prognosis for brain cancer, or how likely it is to be cured, depends on a few things:
- The type of brain tumor
- How fast the brain tumor is growing
- The tumor’s location
- If there are DNA changes in the cells of the brain tumor
- If the entire tumor can be removed with surgery
- A patient’s overall health
Types of Cancerous and Non-Cancerous Brain Tumors
A brain tumor can affect you differently depending on its location and if it is cancerous. Some brain tumors are non-cancerous (or benign). According to the National Cancer Institute, some examples of these types of brain tumors include:
- Chordomas are primarily benign and slow-growing and are often found near the tailbone or where the spine meets the skull.
- Craniopharyngiomas are rare, slow-growing tumors that don’t spread to other parts of the brain or body. They form near the pituitary gland near the base of the brain.
- Gangliocytomas are rare tumors of the central nervous system that tend to form on the temporal lobe (the left or right side of the brain).
- Glomus jugulare are rare and slow-growing tumors.
- Meningiomas are rare brain tumors that usually form on the outer layer of tissue that covers the brain (dura mater).
- Pineocytomas are rare and slow-growing tumors located in the pineal gland near the middle of the brain.
- Pituitary adenomas are slow-growing brain tumors of the anterior pituitary located in the lower part of the brain.
- Schwannomas are rare tumors that grow on the cells that protect nerve cells. They are called Schwann cells.
- Acoustic neuromas (vestibular schwannoma) are slow-growing tumors that develop from the nerves that help balance and hearing.
Other brain tumors are malignant or cancerous. These kinds of tumors include:
- Gliomas are the most common form of cancerous and aggressive primary brain tumors.
- Astrocytoma (glioma) forms in astrocytes (star-shaped cells). These tumors are classified into four grades depending on how aggressive or fast they grow and impact brain tissue.
- Ependymomas are tumors classified into three grades depending on how aggressive or fast they grow.
- Oligodendroglioma tumors are classified into grades depending on their growth speed. Grade 2 oligodendroglioma tumors are slow-growing and can invade nearby tissue, but they may not present symptoms for many years before detection. Meanwhile, grade 3 oligodendroglioma tumors proliferate.
- Medulloblastoma tumors are classified into four different grades depending on their aggressive nature or how quickly they grow.
- Glioblastoma, which is considered a central nervous system (CNS) tumor, is the most common and aggressive brain tumor in adults.
Better Understanding Central Neurocystomas
According to the University of Pittsburgh Medical Center (UPMC), central neurocytomas, the type of tumor Lemanski is battling, are generally noncancerous (benign) brain tumors in the ventricles [fluid-filled spaces within the brain.”
“These lesions may obstruct spinal fluid flow and/or put pressure on surrounding structures, causing symptoms including headaches and confusion,” UPMC explains.
Additionally, the preferred method of treatment is surgery.
As per the National Organization for Rare Disease (NORD), a central neurocytoma is a very rare brain tumor of young adults (over 100 cases reported worldwide). It is typically found in the lateral ventricles and occasionally in the third ventricle.
“Symptoms are those of increased intracranial pressure: headache, nausea and vomiting, drowsiness, vision problems and mental changes.”
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 ensure 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 these four things have 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 “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.”
Avoiding Provider Bias – Is Your Doctor Understanding You?
While your doctor has undergone years of training and practice, they are still human and may have biases that can impact how they treat patients.
To combat these biases and really get the most out of your interactions with your doctor, you should provide her or him with plenty of information about your life and ask plenty of questions when things aren’t clear. We previously spoke with Dr. Dana Chase, a gynecologic oncologist at Arizona Oncology, to better understand how you should approach conversations with your doctor.
According to Dr. Chase, physicians, like many of us, can be slightly biased when seeing patients. She clarified that these biases are rarely sinister but somewhat unconscious and more subtle.
She explained, “We have certain beliefs that we don’t know about. We might look, for example, at an older woman, and just by the way she looks, we might make certain assumptions, and we might not even know that we’re making these assumptions.”
Let’s Talk About Provider Bias
Dr. Chase noted that clearing up misconceptions is important, but so is understanding what your doctor is telling you. She advises women to speak up and ask questions when they don’t understand something.
“It’s never a bad thing to ask for something to be repeated or to ask the doctors to explain it in different terms.”
So, next time you go to your physician, speak up if you need clarification so your doctor can understand you and you can understand them.
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.”
RELATED: Second (& Third) Opinions Matter When Deciding Between Surgery or Radiation
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 why understanding your disease’s potential approaches is crucial.
RELATED: Burned-Out Doctors Make More Mistakes: It’s OK To Talk Openly About This With Them
At the National Cancer Institute, a patient referral service will “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 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.
RELATED: Mental Health & Cancer: A Third of Patients Aren’t Getting the Help They Need
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 sound 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
The bottom line is that 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.
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.
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