Finding and Coping with a Life-Changing Diagnosis

When someone hears, “it’s a brain tumor,” they are understandably in shock. In that moment everything changes. They have to process the diagnosis, understand a new and difficult vocabulary and make difficult decisions about their course of treatment.

What lies beneath

Unfortunately, every year in the U.S., 70,000 people will be on the receiving end of this diagnosis, and yet we don’t know who, we don’t know when and probably most frustrating of all, we don’t know why brain tumors occur.           

While we’re seeing scientific and medical advances in the field, the brain is a complicated structure and brain tumors are confounding for the scientists studying them, for the clinicians treating them, and for the patients and families whose lives have been forever changed by them.           

There are more than 120 different types of brain tumors, which means there is no single answer to the brain tumor challenge. We are striving to reach more people in more places, in more meaningful ways to help them recognize the signs and symptoms of a brain tumor and to better understand their diagnosis and treatment options.

Signs & symptoms* of a brain tumor

  • Frequent and persistent headaches

  • Seizures

  • Loss of sensory (touch) and/or motor skills (movement)

  • Hearing Loss

  • Vision Loss

  • Fatigue

  • Depression           

*Symptoms and side effects may vary depending on tumor type and location in the brain.

Mediaplanet: What is one of the biggest challenges in treating brain tumors?

Stefan Vilsmeier: Many new treatments aim at managing brain tumors similar to managing a chronic disease, without fully eliminating the cancer. Rather than just survival, the new goal typically is maximizing quality of life, which could result in no treatment at all, a combination of several treatments or even repeat treatments. We are working to get patients to adjust to the idea of living with their cancer, while still enjoying the things that matter to them, which is different for each patient. The treatment should never be worse than the cancer.

Scot Ackerman: The biggest challenge when treating brain tumors is finding a balance between treating the tumor most effectively and in its entirety and preserving as much healthy brain tissue as possible. By preserving healthy brain tissue, we can prevent cognitive side effects, such as memory loss and confusion, and neurological side effects, such as loss of motor skills.

MP: After getting diagnosed with a brain tumor, what is the first thing patients should ask their doctors?

SV: Patients should make sure that they understand all their options and the proposed technology and trust their treating doctor. They should ask how common that type of tumor is relative to all brain tumors, and if it is benign or malignant. Also, they can ask how many patients the hospital treats with their tumor type each year.

To get the right level of confidence, sometimes getting a second opinion or talking to other patients matters, especially for benign or rare tumors. Patients should ask about how the treatment itself and the associated risks may affect their future lives, especially their neurocognitive capabilities. They should ask what other clinical subspecialists have been involved in coming up with a treatment recommendation (radiologist, neurologist, neurosurgeon and radiation oncologist). Patients should clearly think about and articulate what matters to them, and what makes their lives meaningful and strive to maintain their lifestyles as much as possible during their journey with a brain tumor.

SA: The first thing patients should do is ask their doctor about their specific brain tumor and the treatment options available. What kind of brain tumor is it—malignant or benign? Is it a primary brain tumor or did it spread from another part of the body? Is treatment needed immediately or can the tumor be observed closely and treated at a later time? What are the treatment options—surgery, radiation or chemotherapy? Understanding your diagnosis and learning about your options will help you to decide what treatment is best for you.

MP: What is the biggest change in the treatment of brain tumors moving into the future?

SV: The amount of digital medical data is exploding, and big data approaches will change cancer care. However, today this includes mostly genetic information and other lab data, whereas volumetric and anatomical information is difficult to process for big data analysis. Quality of life information, including cognitive function and post-treatment activity levels, isn’t sufficiently incorporated in these big data initiatives.

"New software technology allows clinicians to carefully balance the risks of both surgical and radiosurgical treatments, allowing perfect combinations of both techniques."

There is new anatomical mapping technology plus software-controlled clinical workflows, which allow clinicians to accumulate relevant and accurate data. Patient-specific individualized treatments, based on hundreds of data fields collected across thousands of patients, will replace current protocols of following a handful of rigid clinical protocols. This will ensure that best practice will evolve in a very structured way and patient access to these better and more consistent treatments will dramatically improve.

SA: We have seen a real shift in the way cancer treatment is approached not just for brain tumors but for all cancers. The concept of personalized medicine has become a reality for patients in the fact that we have developed more precise and less invasive treatment methods that are tailored to the individual’s specific tumor.

Biomarker testing, also known as molecular or genetic testing, is an important part of personalized medicine. By analyzing the genetic make-up of the patient’s tumor, physicians can recommend the most appropriate treatment. Biomarker testing helps to determine which patients may or may not need chemotherapy. If chemotherapy is needed, physicians can determine which type would be most effective. These tests can also determine which patients would benefit from radiation therapy.

MP: What new technology now exists to better improve survivability of brain tumors?

SV: In the treatment of brain tumors today, surgery and radiosurgery remain the most critical options. Both options are informative, driving treatments, requiring sophisticated software to enable better decision-making. Surgical navigation supports less invasive and more precise tumor resections. Radiosurgery aims at maximizing tumor control while limiting toxicity to healthy tissue, and can be delivered typically in a 30-minute, painless treatment. New software technology allows clinicians to carefully balance the risks of both surgical and radiosurgical treatments, allowing perfect combinations of both techniques.

"We have seen a real shift in the way cancer treatment is approached not just for brain tumors but for all cancers." 

SA: One of the biggest advances we have made, from a radiation oncology perspective, is the utilization of proton beam therapy in the treatment of brain tumors. We have seen remarkable results utilizing proton therapy, as we are able to target the tumor and preserve healthy brain tissue. Proton therapy delivers less radiation to the brain stem, eyes and healthy tissues than conventional radiation therapies, reducing the likelihood of side effects and secondary tumors.

We have also seen advances in surgery and medical oncology. Surgeons are using image guidance technology to more accurately remove the tumor. And medical oncologists have developed cancer vaccines and immunotherapy drugs to boost the body’s natural defenses and get the immune system to attack cancer cells in the body.

Side effects from treatment, such as memory loss, confusion and personality changes, can have an impact on patient’s quality of life. But with advances like proton therapy, image guided surgery and immunotherapy, patients can avoid these side effects and preserve their quality of life.