Newly-diagnosed brain tumor patients have received devastating news, been presented with a slew of perplexing medical terms, and are often recommended for risky and invasive brain surgery within 48 hours. Few situations imaginable could be more frantic. So, amidst the confusion and emotion, how does one sort through this chaotic period in order to make critical decisions that will shape the path of their treatment and long-term prognosis?
National Brain Tumor Society recently announced the launch of a new patient and care-partner education, empowerment, and preparedness effort. The new initiative will provide the resources, information, tools, and guidance brain tumor patients and their care-partners need to play a more active role in their treatment planning and decision-making. This effort includes an online resource called “The Brain Tumor Experience,” that takes online visitors through the key junctures of the brain tumor medical experience, offering tips and considerations that are vital to ensuring patients receive personalized care at every stage of treatment.
As part of the broader effort to inform and empower patients to partner more closely with their medical teams and play a proactive role in their treatment pathways, we are beginning a monthly series of ongoing “advice” blogs that will feature information drawn from “The Brain Tumor Experience” and other tools to highlight key guidance for patients and their care-partners.
For our first installment, we found it fitting to begin with a big one: Brain Tumor Treatment Options.
Your treatment path is critical because it could determine the speed and effectiveness of your recovery. Unfortunately, there are few FDA approved treatments for brain tumors, currently. But that does not mean that options don’t exist.
This section of the Brain Tumor Experience pages goes over current treatment options:
This downloadable PDF also details current treatment options available.
Advice & Tips
- Knowing all your options before beginning any treatment regimen is important. This includes understanding novel (or investigational or experimental) treatment options. More information of these options can be found on this page. In some cases, beginning one type of treatment may prevent or limit your future options, including clinical trial eligibility.
- It can also be helpful to know about the molecular and genetic make-up of your tumor, which could impact which treatments might be viable options for you and/or clinical trials you may be eligible to participate in. For more information on tumor genetic testing, visit this page.
- You can get answers to your questions on treatment options by asking your medical team. Some potential questions to consider asking are:
- What is the goal of treatment for me?
- What are ALL of my treatment options?
- Am I eligible for any clinical trial – and when? What is the goal of the trial(s) and the pros and cons?
- What are the possible side effects of each treatment option?
- Will the treatment impact my ability to enroll in clinical trials in the future?
- What can I do to prepare for treatment?
- What additional treatments might I need?
- How long will my treatment last?
- What will my recovery look like?
- Will I need rehabilitation services, like speech therapy or physical therapy?
- How can I reach you if I have questions after today?
- Who would you send a family member to for a second opinion if they had a brain tumor like mine?
- When should I call you for immediate help? (With which side effects?) What can I do to feel better?
- How do you recommend I keep track of how I feel, and what do you need to know?
- What can I do to manage my side effects? Can you help me create a management plan?
- What if this treatment doesn’t produce the expected results? What would be the next steps?What type of cost concerns should I begin to plan for related to the treatment(s) you are recommending?
- It may also be worth contacting and getting information and/or consultations from multiple cancer centers in your area (or within any geographic distance you are willing and able to travel to if desired) to explore what different options individual centers may have that other might not – again, including novel treatment options.
Treatment options depend on many different factors including tumor type, treatment availability, location of the tumor, physical and mental effects, and overarching recovery goals.
Next month, we’ll explore considerations, tips, and questions to ask during treatment, once you’ve begun your chosen plan.
The above content is intended as broad suggestions for topics and issues to discuss with your medical team. National Brain Tumor Society is not a medical provider and therefore cannot endorse any individual treatments or make specific medical recommendations for patients. Your ultimate treatment decisions should always be made in full consultation with licensed medical providers, preferably at high-volume medical centers that have specialists with deep experience and knowledge in treating brain tumor patients.