Resources

Essential Resources on Brain Tumor Diagnosis and Treatment

Brain Tumor Support Group
Brain Tumor Support Group
Brain Tumor Support Group
Brain Tumor Support Group
Brain Tumor Support Group
Brain Tumor Support Group
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Who to Talk to, Who Will Listen

Educational and emotional support is vital when responding to the unsettling news of a brain tumor diagnosis. Giving a smile to another patient, sharing information about treatment options, and providing general overall support is what “group” meetings are all about. Where to turn for treatment, how to break the news to family, and who to talk with about feelings and questions are among the many needs which we face and can discuss with the group.

While brain cancer may seem to be a lesser-known, lesser-studied, and lesser-funded disease, there exists a worldwide cooperative involving brain tumor patient support, advocacy initiatives, informational organizations, and clinicians. The SBTF strives to provide educational and emotional support to those on this journey by providing information about support services or links to various organizations or sites through which you might garner that educational and emotional support.

SFHInc May 2014

Support Groups

Throughout the year, the SBTF supports or hosts Brain Tumor Support Group meetings for patients, caregivers, friends, and families. These meetings provide an opportunity to share experiences, to learn about current therapies, and to receive information about various aspects of brain tumor diagnosis and treatment. Led by a Support Group Facilitator, the group setting allows individuals to share their experiences on the brain tumor journey, to ask questions, and to discuss progress. Topics will vary and a brochure, if available, will be posted in advance. Brain Tumor Support Group meetings provide an environment in which to discuss progress, treatments, and concerns with others who are going through the brain tumor experience. The information provided during the meetings is not intended to be a substitute for professional medical care or medical attention by a qualified practitioner.

The SBTF provides a listing of various brain tumor support group meetings in the Southeast; it does not provide recommendations or endorsements of specific physicians, medical institutions, products, procedures, or tests.

Find a Support Group Meeting
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Find a brain tumor treatment center

When diagnosed with a brain tumor, you will be immediately presented with numerous decisions about your treatment and care. One of the important decisions you will mkae is choosing a brain tumor treatment center. Since brain tumors are considered a rare disease, treatment centers offer varying levels of brain tumor expertise and technology. It's important for you and your loved ones to evaluate treatment centers based on the care you may need.

The ABTA Treatment Center Guide provides detailed information about a variety of treatment centers, including the number of patients treated annually, technologies and specialized procedures offered, supportive services available, and more.

To further empower patients and their loved ones in making decisions that lead to better treatment and care, you can use these Guiding Principles for Central Nervous System Tumor Treatment Centers, as a resources for discussions with your healthcare team. *The Southeastern Brain Tumor Foundation was part of the working group to develop these Guiding Principles.

Brain Tumor Support Group

How To Help Me:

Developed by members of the Southeastern Brain Tumor Foundation Support Group as a resource for how friends can be of assistance to an individual or family coping with a diagnosis of a brain tumor.

Being of assistance to an individual is a wonderful gift. Being of assistance to a patient, who is unable to complete even the most routine of tasks, is priceless. Equally priceless is being of assistance to a patient caregiver. The brain tumor journey can be equally as daunting for both the patient and the caregiver and there are countless ways in which you can provide assistance to both.

First, start by making the statement “I want to help you” and complete the statement with something like “I have Thursday or Friday from 3:00 pm–6:00 pm available to come do laundry.” Follow that statement with the question “Which day works best for you?”

Believe it or not, the statement “I am available on X day” shows greater forethought and greater sincerity. It has far greater meaning than the statement “let me know if I can help.” If you truly want to be of help, rephrase your statement, and you’ll see what a difference a few words make. Below is a list of ways in which you can be of assistance to the patient and/or the caregiver:

  • Transportation to medical appointments
  • Sit with the patient while the caregiver takes a nap
  • Massage / acupuncture
  • Give me a manicure or pedicure
  • Set up a schedule to make sure someone is always with me or checking on me
  • Bring practical gifts, like fruit baskets or books instead of flowers
  • Exercise with me
  • Help me exercise my brain
  • Picking up my mail and newspapers while I am getting treatment
  • Pet sitting
  • Babysitting
  • Offer to strip the bed/change the sheets
  • Offer to clean my house or offer to hire a maid
  • Coordinate meals so all meals are not delivered at one time
  • Schedule visits so that I am rested when you come to see me
  • Bring me audiobooks
  • Make me laugh
  • Laugh with me
  • Watch for my mood swings
  • Rent videos for me
  • Watch movies with me
  • Accept my honesty
  • Don’t try to “sugar coat” my feelings
  • Don’t tell me that everything is going to be fine
  • Be aware I may be immuno-suppressed, and don’t visit if you are sick
Print the How to Help List
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Post Operative Care: Brain Tumor Resection - What to Expect

Surgery can be a scary and nerve wracking event, especially brain surgery. Being mentally prepared and having some knowledge of what to expect will help you better understand the post-surgery process.

The typical hospital stay can be anywhere from 2-14 days depending on the patient. The length of the stay varies per person and is dependent on prior health status, location and size of the tumor resected, and possible side effects or “neurological deficits” after surgery. It is very likely that you will spend at least one night in the ICU and then be transferred to a less intensive level of care. After brain surgery the concern for swelling and bleeding requires close monitoring. This includes taking your vital signs and nurses performing “neuro checks” every 1-2 hours depending on the facility’s protocol and then progress to every four hours. These neurological assessments include assessing your mental status, level of alertness, and strength.

Whether the tumor is low or high grade you may experience the following after surgery:

  • Generalized weakness or weakness on one side of the body
  • Headache
  • Difficulty with speech
  • Poor balance, lack of coordination, or difficulty walking
  • Confusion or forgetfulness
  • Seizures

Although headache is normal and expected, you may not develop any of the listed above side effects. Some of these side effects may only last for a short amount of time although some will possibly last longer. Make sure that you communicate with your healthcare staff about the onset of any new changes that you develop.

While in the hospital, depending on your condition, your healthcare team will collaborate with you on whether any physical, occupational, or speech therapy is required either in a outpatient or short term rehabilitation setting. Your healthcare team will collaborate with you and help decide what your best plan for success is.

It is normal to be nervous and scared for this journey. Education and knowing what the hospital stay is all about can help ease that anxiety. If therapy is required, stay positive and work hard with therapy. Always keep in mind to be patient and kind to yourself throughout this process!

Helpful Communication and Aphasia

Aphasia is a language disorder that affects the ability to communicate and understand verbal and/or written language. Although it is most commonly found in stroke patients it can also occur in brain injuries and brain tumors.

People with aphasia have difficulty understanding others, expressing themselves or they may struggle with both. It is very common and natural for people with aphasia to become frustrated, angry, and depressed. Being trapped in your own mind and unable to communicate your needs, wants, and thoughts can feel hopeless.

Trying to determine what someone with aphasia is attempting to communicate can also be frustrating for their loved ones. Friends and family may sit there going around in circles while trying to figure out what the patient is saying and likely resulting in both people getting very frustrated and losing patience. When the person with aphasia becomes frustrated it becomes even more difficult for them to communicate. Below are some helpful tips in communicating and helping someone with aphasia communicate.

  • Speak in short and brief sentences
  • Use yes or no questions
  • Do not ask open ended questions
  • Slow down your speech and annunciate your words
  • Communication board- single words or pictures to point
  • Eliminate background noise
  • Give them time to express themselves
  • Celebrate moments that a person successfully expresses themselves

There are many speech therapy programs designed to work with aphasia patients. It may also be helpful to attend these sessions with your loved one in order to implement the methods used in therapy. The idea is to continue using these techniques at home in order to overcome or better manage aphasia. Providing support, communication training, and resources will help improve the quality of life of both person with aphasia and their loved ones.

Visit the Social Security website to learn more about filing for Social Security Disability: http://www.socialsecurity.gov/disability/index.htm

Various United States clinical trial sites:

Virtual Trials: http://www.virtualtrials.com/clinical_trials_finder.cfm

Clinical Trials.gov: https://www.clinicaltrials.gov/

Center Watch: http://www.centerwatch.com/

Patients Like Me: http://www.patientslikeme.com/clinical_trials