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.
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’ve started a monthly series of ongoing “advice” blogs.
For our first installment, we found it fitting to begin with a big one: Brain Tumor Treatment Options. This month, we’ll explore considerations, tips, and questions to ask during treatment, once you’ve begun your chosen plan.
As you move through treatment, you may have a million questions for your medical team. That is okay! Ask as many questions as you need to in order to feel comfortable with the treatment techniques and plans that you and your doctor have chosen.
Below are some of the questions you may want to consider while you or your loved one is in the treatment phase (some over-lap with suggested questions from the previous Advice Column on choosing between your treatment options):
- Where will treatment be administered? In a hospital? At home? In an out-patient medical setting?
- How long will treatment sessions/regimens last?
- Will I be able to work during this time?
- Are there any other restrictions during treatment (e.g. Can I travel? Can I operate a motor vehicle? etc.)?
- What type of cost concerns should I begin to plan for related to this treatment?
- Should I expect side-effects? If so, what and how severe could they be?
- How can I manage the side-effects from treatment?
- When should I call for immediate help with any side-effects experienced?
- Can you tell me about any financial support services, from either the hospital, the company that produces my treatment, or local charities, that my family and I can use to help with the cost of my treatment and other hardships we may be facing related to my brain tumor?
- Do you have any special rates for people paying out-of-pocket?
- Who is responsible for my follow-up care?
- Should I be planning financially for long-term medical care such as a nursing home or hospice?
- Who can help me understand my state’s Medicaid rules (medicaid.gov) and Social Security Disability for long-term care and my eligibility?
- Do I need rehabilitative services? If so which ones and for how long?
- What if I don’t meet my rehabilitative goals before my benefits run out?
This portion of the Brain Tumor Experience web resource can be found online, here.
Remember to keep a notebook and write down questions that you might have and want to ask in-between visits to your doctor. You can bring that notebook with you to appointments and record your doctor’s answers.
NBTS has created a downloadable/printable PDF that can help with this, called the “MyGrayMatters Notebook.” It can be found here.
In addition to questions for your medical team, it can be helpful to address the following questions upfront with your health insurance provider: Are rehabilitative services covered by my insurance? If so, what is covered? What if I don’t meet my rehabilitative goals before my benefits run out? Are private duty care and long-term care covered under my health insurance policy? If not, can I purchase this additional coverage?
We’ve also created a video on the Top 10 Questions, in general, to consider asking your medical team. View it below.
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.