Glioblastoma 

A Young Man's Journey

Glioblastoma

When I Had A Brain Tumor

When I was eight years old, I suffered from a brain tumor - at least I thought so. And why did I think that!? At the young age of six, I started developing migraine attacks. They would often stop me from being able to go to school and I felt sick for a few days. This happened at least once a month.  As you might know by now, medicine has always fascinated me deeply. So oft course, I started reading my grandmothers self-diagnose book up and down. One day, when I was eight, I found a chapter about brain tumors. The symptoms, described in the book, were just so obvious that it was certain, for me, that I was a cancer patient. So I started reading all about it and got more and more anxious. 30 years ago, the prognosis wasn't great at all. Cancer meant, for me, you are going to die - sure thing!
As you can imagine, this fear deeply rooted in me - and is still there. If you asked me what my biggest fear is - my answer would certainly be cancer. 

My First Cancer Experiences

When I was 17, my first dead patient was a 45-year-old bowel cancer patient, she was one of the sweetest people I got to know. When my training doctor took me on a home visit to see her, and we found her dead - you don't get that out of your head. Even after 20 years ...

When I was 19, a 35-year-old patient, which I had a deep connection to - she was a nurse btw - died of liver cancer. That was the first time I joined someone on his journey into peace. I had some lovely colleagues who guided me through this process with her. And even though I was deeply touched and sad, I was happy I could help her and her family to make the last moments as comfortable as possible for all of them. 
 
During my career, I have seen many people suffer and die from the most various diseases. Some of my patients stay with me as if they were a family member, and I can still get very emotional about it. So today I want to tell you about Thomas (name changed) and our journey.

Thomas - Glioblastoma and Intense Emotions

In 2009, I didn't work in the ER, instead I worked in a rehabilitation center for Glioblastoma patients. The first thing I recognized there was that I was surrounded by 19 young men and 1 woman. At first, I thought they all looked very healthy as they were in their early twenties, eating normal, talking normal and playing table tennis in-between. It felt a little like a summer camp there. Nobody looked like that "typical" cancer patient without hair and pale - instead, they all looked like they could be my friends, and I would be hanging out with them. Later on, I learned that they put the group together like that on purpose, to make those patients feel as "normal" as possible - but they are still all in the same boat with their future and could share their feelings and thoughts.

When you start somewhere new, you start by reading the patient's files to get a picture of them. You want to know about their past and what they have been gone through. So I read them all, and although they were kind of similar, one caught my attention. It was the one from Thomas. He grew up close to where I grew up, he was an ambulance driver and we instantly felt a connection. Of course, people who work in healthcare have that - you always have a connection no matter where and what you are doing in the healthcare system ...

 So I went through his file and learned that he got diagnosed with Glioblastoma one year ago, he underwent all kinds of therapy possible by that time. He now suffered from epileptic seizures on a daily basis and severe headaches, a blurred vision and depression. He was there to help him to manage his symptoms, as he was treated as a palliative patient. He couldn't be cured. So he was on strong painkillers and medication that would try to keep his seizures under control. Psychologists wanted to help him to accept the unavoidable and find peace with his situation.

When I read that, I was deeply shocked, he did not look like a cancer patient at all. In fact, he was a handsome guy, funny and smart. He told me that he just became a father a few months ago and that the worst part about his diagnosis was, that he couldn't see his girl grow up. You can imagine what that did to me. We spent a lot of time talking and reflecting life. Trying to find a point in all that. We were thinking about his girl and how he wants her to remember him.

A few days later, I witnessed a severe seizure and realized for the first time that he WAS sick. Really sick. I stayed with him, talking, taking care of him, and it broke my heart how deeply devastated he was. He felt betrayed by life and God and all mighty powers he could think of. He was a GOOD person, someone who helped people, someone who cares! WHY him!? I couldn't answer - just listen. It was extremely difficult for me to understand that sometimes less is more. When someone is not feeling well, I want to help. But sometimes the best help is to do nothing - just be there ...

After 4 weeks of treatment, Thomas went back home. After 6 months, we got a letter from his family thanking us for our efforts and care, with the message that he passed away.

He left, but is still there. His family, friends, and his daughter carry a part of him with them. And I carry him with me. He is not forgotten ...

Experiences like that, make me appreciate my life deeply. We never know when it ends and MUST enjoy it as much as we can.
Embrace the mornings with your kids, even after a sleepless night.
Embrace the outbreaks of your 3-year-old - because others can't.
Embrace life and find something to life for - it's worth it ...

What is Glioblastoma?

Glioblastoma, also known as glioblastoma multiforme (GBM), is an aggressive and malignant grade IV brain tumor that originates from astrocytes—cells that support nerve function. According to the American Brain Tumor Association (ABTA), glioblastomas are the most common and deadliest primary brain tumors in adults. These tumors grow quickly and infiltrate surrounding brain tissue, making complete surgical removal nearly impossible (ABTA). 

Symptoms and Causes of Gbm

Glioblastoma is an aggressive type of brain tumor that often presents with a range of signs and symptoms depending on its location in the brain. People diagnosed with glioblastoma may experience persistent headaches, nausea, vomiting, seizures, or changes in mood, memory, and personality. Some patients notice weakness or numbness in limbs, vision problems, or difficulty speaking. These symptoms are typically caused by the tumor’s rapid growth and the pressure it places on surrounding brain tissue. While the exact cause of glioblastoma is not fully understood, several factors such as genetic mutations and environmental influences may contribute to its development. 

 

Glioblastoma Diagnosis, Management, and Treatment

The diagnosis and treatment of glioblastoma usually begins with imaging tests like MRI or CT scans that reveal abnormal brain activity or mass. A biopsy is often required to confirm the diagnosis and determine the tumor’s grade. Once confirmed, glioblastoma management and treatment options involve a multidisciplinary approach including surgery, radiation therapy, and chemotherapy to reduce tumor size and slow its progression. Despite its aggressive nature, treatment focuses on extending survival and improving quality of life. Ongoing research and clinical trials continue to explore innovative therapies, offering hope to patients and families affected by this challenging diagnosis. 

Glioblastoma in the United States 

According to the American Brain Tumor Association (ABTA), glioblastoma accounts for approximately 48% of all malignant brain tumors diagnosed in the United States (ABTA). The National Cancer Institute (NCI) estimates that 12,000 to 13,000 new cases are diagnosed annually. The disease is more common in men and typically affects adults around the age of 64 (NCI). Despite advances in treatment, glioblastoma remains one of the most challenging brain cancers to treat due to its aggressive nature and poor prognosis. 

Glioblastoma in Europe 

According to a study published in Neuro-Oncology, glioblastoma (GBM) is the most common and aggressive malignant brain tumor in Europe. The incidence has increased in recent years; in England, for example, cases rose from 3.27 per 100,000 people in 1995 to 7.34 in men and 4.45 in women by 2013 (Neuro-Oncology). The risk of glioblastoma is highest in older adults, with incidence peaking at 18.5 per 100,000 in individuals over 65 (ScienceDirect). Glioblastoma remains a significant cause of mortality, with approximately 15,000 deaths annually in Europe (European Commission). 

New and Emerging Treatments for Glioblastoma 

 

Despite the aggressive nature of glioblastoma and its poor prognosis, ongoing research aims to develop more effective treatments. According to the National Cancer Institute (NCI), several promising approaches are being tested in clinical trials. 

  • Immunotherapy: Scientists are exploring immune checkpoint inhibitors, such as pembrolizumab, to help the immune system recognize and attack tumor cells. While these therapies have shown success in other cancers, their effectiveness in glioblastoma remains under investigation (NCI).

  • CAR-T Cell Therapy: Researchers are developing chimeric antigen receptor (CAR)-T cell therapy, which involves modifying a patient’s T cells to target tumor-specific antigens, such as EGFRvIII, a mutation found in some glioblastomas.

  • Gene Therapy: Experimental treatments focus on modifying tumor cell genetics to make them more susceptible to treatment or to slow their growth. Some approaches involve viral vectors that deliver therapeutic genes directly into the tumor.

  • Targeted Therapy: Drugs designed to inhibit specific molecular pathways involved in tumor growth, such as EGFR, VEGF, and PI3K inhibitors, are under investigation.

  • Personalized Medicine: Advances in biomarker testing allow for a more tailored approach, helping doctors select treatments based on an individual’s tumor profile. Patients with MGMT methylation, for example, tend to respond better to temozolomide (TMZ) chemotherapy.

Clinical trials for these novel therapies are ongoing in both the U.S. and Europe, with some early-phase studies showing encouraging results. However, challenges such as the blood-brain barrier, tumor heterogeneity, and immune system evasion continue to limit treatment success. Further research is essential to improve survival rates and quality of life for glioblastoma patients. 

Helpful Links for Treatment Options:

 National Cancer Institute (NCI)

American Association for Cancer Research (AACR)

ClinicalTrials.gov

  • Provides updates on ongoing clinical trials exploring treatments like CAR-T cell therapy, immunotherapy, and targeted therapy:
    Clinical Trials - Glioblastoma

European Society for Medical Oncology (ESMO)

  • A comprehensive resource for glioblastoma treatments, including new approaches and clinical trial information:
    ESMO - Glioblastoma

FDA (U.S. Food and Drug Administration)

ScienceDirect

Support and Resources

 

A glioblastoma diagnosis can be overwhelming for patients and their families. Several organizations provide emotional, educational, and financial support: 

American Brain Tumor Association (ABTA): 

  • Offers a CareLine for information and support.
  • CareLine: 800-886-2282
  • Website: www.abta.org


Glioblastoma Foundation: 


National Brain Tumor Society: 


Brain Tumor Network: 

  • Provides free, personalized support for individuals diagnosed with primary brain tumors.
  • Phone: 844-286-6110
  • Website: www.braintumornetwork.org 
Gliobalstoma Support
Glioblastoma

All the best to you and your family!

I deeply feel for everyone on that path and want to send you lots of love, hope and strength!