Category: Patient Stories (Homepage)

DJ utilized the innovative Tumor-Treating Fields technology by wearing the Optune device for 2 years. Last year, DJ joined the Head for the Cure staff as its Community Outreach Coordinator.

Brain tumor survivorship is weird. Depending on a tumor’s location, your deficits vary. In my case, mine are mostly invisible to a casual observer.

When hearing the words, ‘You have a brain tumor’, your mind begins to wander in multiple places; How long do I have? What does this mean? Is it even true? Are you sure? Could it be anything else?

Lynn was living a fast-paced life before she was diagnosed with glioblastoma (GBM). Since her diagnosis, she’s shifted her perspective and found renewed peace and positivity through her unshakeable bonds with friends and family. Making Time for Too Much I used to be a hardworking, never tired, work-till-I-dropped kind of person. Ever heard of that pink bunny character, the one who sells batteries? Well, let’s just say, my energy could’ve put that guy to shame.  I used to leave for work at 5:30 a.m. and return home around 7:15 p.m. On Monday nights, I would dance …

A brain tumor patient will encounter numerous specialists and need to make a multitude of decisions throughout their journey. With these factors and more, navigating cancer care can be overwhelming.  For patients with glioblastoma (GBM), management is even more challenging due to their poor prognosis, feelings of isolation, need for treatment, and cognitive decline associated with this rare and progressive disorder. For these reasons, shared decision-making (SDM) must be integrated into standard practice so that patients’ expectations and goals are considered when discussing and weighing the risks and benefits of treatments.

In the 7 years since I’ve been diagnosed with a large and rare brain tumor called a ganglioglioma, I have become much more comfortable sharing my story with others. I was 19 years old and a sophomore in college when I was diagnosed after my right side went numb and I went to the ER. It was a shock and an even bigger shock when the doctors told me it had been most likely growing slowly for more than 10 years. After I had an awake craniotomy …

As I write this, it marks the week, three years ago, that so drastically changed my life. I was 32 years old when I was told that the headaches I had been suffering from for several months were actually being caused by a lesion on my brain and that I would need brain surgery right away to remove the tumor sitting above my right frontal lobe.

After a diagnosis of brain cancer, it is likely that surgery or some other treatment will be recommended to remove or shrink the tumor. These treatments can sometimes alter a patient’s mental status and/or ability to communicate. This possibility makes it all the more important for families to consider executing various legal documents to ensure that a patient’s wishes are honored. While it may seem morbid to discuss what treatments or measures should be taken to keep someone alive or comfortable, these documents can help provide guidance and reassurance for …

Brains for the Cure (BFTC) is an online navigator designed to lend a helping hand throughout one’s brain tumor journey as they advocate for themselves, become educated on the latest research and treatments, and connect with others through Ambassadors, online support groups, and stories.

Today, May 10th, marks Ependymoma Awareness Day! May 10th was chosen to bring more awareness to this rare brain tumor type because of the 10 different molecular groups of ependymoma. What is an ependymoma? According …