This blog features posts from multiple departments of the National Brain Tumor Society. From keeping you updated on the research advancements, to providing insight into our public policy advocacy efforts, we want to keep you informed of how NBTS as an organization is here for you. Questions or comments? Email questions@braintumor.org.
Category: Weekly Topics Category
This week our team will be highlighting some of our go-to resources for brain tumor patients and their family members.
Here's what's lined up for the week:
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Tuesday: Financial and Insurance Resources
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Wednesday: Pediatric Brain Tumors
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Thursday: Support Services
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Friday: Clinical Trials
We hope this week will be "resourceful" for you and your loved ones!
To kick off the week, check out our resource directory listing of Brain Tumor and Brain Tumor-Related Organizations.
Please also chime in on what resources and support services have been most helpful to you throughout your experience by leaving a comment!
National Brain Tumor Society
Caring for a loved one with a brain tumor is hard work but it is especially hard from far away. You may be wishing you could be with your loved one all the time but be limited by work or other responsibilities. If you are caring for someone from a distance, you may be asking, “What type of help can I offer? How can I be in the loop with the medical team when I live out of town? How do I provide support? What if my loved one needs more care than I can offer by phone or with infrequent visits?”
The first thing to realize is there is a lot you CAN offer as a long distance caregiver; for example, you can offer emotional support by phone, email, or by sending cards/mail regularly. You can also help with gathering information via the web. These days the web can make other tasks easier from a distance too—online bill pay can help if you find yourself tasked with handling the finances. Sites like Caring Bridge or Care Pages are tools you can use to stay informed or keep others up to date on your loved one’s situation.
In terms of your treatment team, using your in person visits to meet providers face-to-face will help you communicate more easily when you are at a distance. You can also help by arranging or organizing others nearby to accompany your loved one to appointments and checking in with them afterwards. Finally, if the needs are too great or your loved one is isolated, consider a private pay case manager. Many social workers moonlight part-time as private case managers and can help with organizing medications, finances, or other tasks. This may be a solution that works for you.
This week, we are talking about long distance caregiving. Do you have a loved one in a different city or state that you are helping? What challenges have you faced? What tips can you share with others?
Blog repost: H Patterson, 6/21/10
Tell me what you eat, and I will tell you what you are. ~Anthelme Brillat-Savarin
This Frenchman understood a profound truth about food and the role it plays in our lives. What we eat is shaped by our culture, our upbringing, our families, our geography, and our resources. Our associations with food stay with us; I still feel a nostalgic pull for the warm biscuits at a breakfast spot where I ate with my dad growing up. When food and diet are disrupted because of illness, either because people need to change their style of eating for health reasons or because they get ill and cannot eat, it is very hard for families.
Food is also a way that people express love in many cultures---through cooking, through hospitality, and through sharing meals together. Food is often a way parents try to maintaining normalcy when a child is sick and life is spiraling out of control, wanting to cook the child's favorite meal or offer other comforting foods.
Survivors and families alike often ask, “What should I be eating? What should I feed my loved one during and after treatment?” While the future feels out of our hands, nutrition is an area where we can have some control—whether as a survivor or a loved one. This week we are talking about nutrition—how to maximize the impact of nutrition to stay healthy and how to navigate the changing world of nutrition and diet during treatment for a brain tumor.
What questions do you have about nutrition? What tips do you have to share with others?
Blog repost: H. Patterson, 9/17/10
Headaches are one of the many symptoms that can affect brain tumor patients. Some patients experience headaches as an early symptom of their tumor. Others get headaches after treatment and these may linger. Learning how to manage these and other symptoms in the most effective way is critical so that you can maximize your quality of life.
To get things started this week, we’d love to hear from you!
What symptoms have you found the most difficult to manage?
How do you cope with persistent symptoms?
Any good tips about managing headaches?
Patient Services Team
Image: pc-help-ipswich.co.uk
Reposted from 12/13/2010
Not too long ago, I spent some time with old friends—you know, the kind where every time you get together it ends in belly-aching laughter. Whenever we have one of our long dinners and spend more time laughing than eating, I feel great for days. Laughter, especially the hearty soul-filling kind, is powerful. It can help us shake off stress at the end of a busy week, not surprisingly. Studies also show that laughter affects stress and health in a much deeper way.
Researchers have discovered that laughing lowers blood pressure, reduces stress hormones, and boosts the immune system. Laughing also releases endorphins, causing a series of biological responses which affect our mood and health long after our laughter has stopped.
This week we’re talking about laughter because few things can be as difficult as a brain tumor—whether as a patient or a family member. Finding ways to remember the lighter side of things, to laugh with (or at?) family and friends, and to see the humor in everyday life can be incredibly healing.
This week, we’d love to hear from you. How has laughter been important since your/your loved one’s diagnosis? What are the sources of laughter in your life that keep you going?
Adapted from 3/29/10 post, H. Patterson
This week we'll be talking about the scans and waves in the brain tumor experience: MRIs and EEGs. Here's a little background on these common neuroimaging tests:
MRIs
A head MRI (magnetic resonance imaging) is a type of imaging test, or scan, that uses powerful magnets and radio waves to create pictures of the brain and surrounding tissues. Take a
Discovery Health quiz to see how much you know about MRIs (as if you wanted to know more, right?).
Read some of our previous blog posts related to MRIs here:
EEGs
An EEG (electroencephalogram) is a test used to detect problems in the electrical activity of the brain. Among many functions, an EEG test may be used to diagnose or monitor seizures or evaluate tumors. Read more about EEGs here. You may also enjoy reading a post from The Liz Army blog: From beginning to end: this was my EEG experience.
Tell us about your MRI and/or EEG experiences with us today. For instance, if you experience MRI anxiety, what helps calm your nerves? Share any tips and tools you have in the comment section.
Patient Services Team
Sources:
EEG: MedlinePlus
Head MRI: Medline Plus
Would you like to have your personal story featured as part of the Photo Gallery at our 2011 Summit in Philadelphia, November 3-6?
Here’s what you do:
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Take or use a digital photo you already have that relates to one of the following themes: support and hope, the brain tumor experience, or survivorship. To ensure reproduction is high quality, take a look at our photo guidelines.
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Along with your photo, submit a short 250 word narrative and/or poem relating to the topic.
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Email your photograph and narrative to info@braintumor.org by Friday September 30, 2011. Title your email: Photo Gallery Submission
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In your email, please include your full name and a phone number where we can reach you.
Learn more about the 2011 NBTS Summit here.
On that note, this week our blog topic is all about self-expression. Tell us what hobbies, crafts, or activities you’re involved in. Do you dance, sing, write, or create art? Feel free to comment about your creative activities or aspirations.
Also, be sure to check out our
Personal Expressions discussion forum topic. Shout out to
steven5 for consistently adding in new poetry to that forum!
Becca Jones, MPH, CHES
Program Manager, Patient Services
Here we are in the middle of August! In case you’ve missed any of our recent “Headquarters” Blog topics, here’s a recap:
Pituitary Tumors
Pea-sized and located near the base of the brain, the pituitary gland serves as the “master gland” of the endocrine system. It is the conductor of hormone function and regulation in the body. Read more
Coping With Depression
Grief and sadness are common reactions to a brain tumor diagnosis. These feelings may be circumstantial due to the uncertainties and life changes that living with a brain tumor brings. However, everyone copes differently. Read more
Young Adult Brain Tumor Survivors
This week we'll be discussing young adults and living with a brain tumor diagnosis. Of all brain tumor diagnoses, nine percent are among individuals between the ages of 19 - 34. Additionally, over 72,000 adolescents and young adults (ages 15-39) are diagnosed with cancer in the United States each year. Read more
Hydrocephalus and Shunts
Hydrocephalus is a buildup of cerebrospinal fluid (CSF) in the brain that causes brain swelling. CSF has an important function; it surrounds the brain and spinal cord and serves as a protective cushion against injury. The circulation of CSF also serves as a brain filtering system, offering nutrients and also removing waste from surrounding tissues. Read more
What have been your favorite topics so far? Please give us feedback if there is something that you’d like us to cover in the future. We're here for you!
Patient Services Team
Image: logasprings.com
Hydrocephalus is a buildup of cerebrospinal fluid (CSF) in the brain that causes brain swelling. CSF has an important function; it surrounds the brain and spinal cord and serves as a protective cushion against injury. The circulation of CSF also serves as a brain filtering system, offering nutrients and also removing waste from surrounding tissues.
Hydrocephalus may occur among brain tumor patients from the tumor itself, from brain hemorrhage, or from brain injury. The goal of treatment for hydrocephalus is to reduce or prevent brain tissue damage by improving the flow of CSF. The most common treatment is inserting a shunt (flexible tube) within the brain to improve CSF flow. The shunt tubing travels to another part of the body, such as the abdomen or the heart, where extra CSF can be absorbed.
To learn more about hydrocephalus, the Hydrocephalus Association offers a great FAQ page.
This week our team will be talking about shunts as a treatment option for hydrocephalus. Have you or a loved one had a shunt implanted? Share your experience with us.
Patient Services Team
Source: Hydrocephalus Association
I’ve interacted with many Young Adult (AYA’s) brain tumor survivors. I’ve followed their blogs; I’ve given them guidance and support where I can, and laughed and cried right along with them. We know that the brain tumor experience has similarities, but the one thing that strikes me as different about working with “Young Adults” (those 40 and under) is their incredible knack for candor. To be specific, it’s humor mixed with complete and total honesty. While it's scary real, it’s incredibly refreshing. For example, Liz from the Liz Army Blog was once referring to wearing a face mask to help protect her immune system while out shopping, and she wrote:
Now I know what it feels like to be a dog wearing a cone around its neck…At the checkout line some kid was putting his grubby hands on my basket and then sneezed three times. He stared at the mask and said, “Mommy! Why is she wearing that?” I said, “To protect me from germ-bags like you...Read more.
Other YA survivors like Eric, from They Call Me Galvez, writes catchy and creative blog titles, like Tell that Tumor Off! In a letter to his tumor addressed, "Sup Tumor," he said:
You picked the wrong guy to mess with. There are a bunch of smart people doing research to fight you. It’s only a matter of time before before someone finds a cure to fight you. Your days are numbered...Read more.
It’s no secret here at NBTS that we try to follow blogs in the community while we blog back to you. If you still haven’t had a chance to read some of our favorite YA blogs, I hope you take the time to check them out. Not only can they help you laugh along the way, but the words on the screen offer a powerful reminder that young adult brain tumor survivors are not alone.
Tamar Sekayan, MSW
Assistant Director, Patient Services
This week we'll be discussing young adults and living with a brain tumor diagnosis. Of all brain tumor diagnoses, nine percent are among individuals between the ages of 19 - 34. Additionally, over 72,000 adolescents and young adults (ages 15-39) are diagnosed with cancer in the United States each year.
To kick off this week, check out some of these great blogs from the young adult brain tumor community:
If you are a young adult brain tumor survivor or caregiver, what resources or support services have helped you the most? Also, if you have a personal blog that you would like to share with the community, feel free to leave a link in the comment section!
Patient Services Team
Sources:
Central Brain Tumor Registry of the United States
National Institutes of Health
Grief and sadness are common reactions to a brain tumor diagnosis. These feelings may be circumstantial due to the uncertainties and life changes that living with a brain tumor brings. However, everyone copes differently. Our team often hears both sides of the spectrum - from feelings of appreciation for life at the moment, to mourning the life that once was.
If feelings of sadness, anxiety, or loss are interfering with your everyday life, don't let these emotions fester. There are confidential treatment and support services to help you. To learn more about symptoms of depression and treatment options, the National Cancer Institute has a good online resource. If you need tips on where to seek help, you can also contact our Patient Services team at info@braintumor.org or at 800.934.2873.
Revisit our Headquarters Blog this week for more information and resources on the topic of depression.
If you've struggled with depression and would like to share what has helped you get through difficult times, please share with this community.
Becca Jones, MPH, CHES
Program Manager, Patient Services
Image: via John Krause
Pea-sized and located near the base of the brain, the pituitary gland serves as the “master gland” of the endocrine system. It is the conductor of hormone function and regulation in the body.
Pituitary tumors are abnormal growths that develop on the pituitary gland. They can range from low to high grade, but are mostly non-cancerous (referred to as adenomas). While a majority of these tumors are benign, they can still have a large impact on a person's health. Depending on the effect of the tumor, it may cause the pituitary gland to be underactive (hypopituitarism) or over-produce hormones.
Symptoms due to a pituitary tumor will vary. They are dependent on the size and location of the tumor as well as how the tumor has affected hormone production. For instance, if a pituitary tumor grows large enough, it may press on optic nerves and lead to vision problems. In other cases, if a pituitary tumor secretes too much of a hormone, it can cause a variety of side effects ranging from mood disorders, infertility, arthritis, or diabetes.
To learn more about pituitary tumors, the Pituitary Network Association has an excellent FAQ page.
If you’ve been affected by a pituitary tumor, and would like to share your experience with the rest of the community, please comment below. You can also visit our online forums under the “Discuss tab” to engage in more specific discussions.
Patient Services Team
Image: headway.uk.org
This week we'll be talking about managing and preventing oral health complications from cancer treatments. Head and neck radiation, as well as chemotherapy, can increase the risk of developing oral health problems ranging from dry mouth to greater susceptibility to infections. Understanding these risks is half the battle, but accessing dental care may be low on the priority list when planning for or undergoing brain tumor treatments.
Stay tuned for some educational information on oral health care, as well as resources to accessing care for the underinsured or uninsured. To start, a great educational resource is Cancer Treatment and Oral Health by the National Institute of Dental and Craniofacial Research (NIDCR).
Have you or a loved one experienced oral health issues as a result of brain cancer treatments? Share your resources as well as symptom management tips with the rest of the community!
Patient Services Team
Image: Microsoft Word
At five years older, it feels like I'm always a phase ahead of my sister. When I went to college, she was starting high school. When I finished undergrad, she was headed to college. I was the person that she'd call at any hour when she needed advice. I coached her on what to avoid and what to do -- naturally as a bossy older sister. There's always this pull of affection, mixed with annoyance that only another sibling might understand! As we get older, things have leveled a bit, but I’ll always feel like the bigger, protective sister. Though we don’t live near each other, we still talk regularly and share words of encouragement and advice when it's needed the most.
This week we'll be talking about the unique roles and bonds between siblings. In particular, we'll be talking about how to navigate this brain tumor journey as a sibling and also how to support siblings who are walking this road with a loved one.
Do you have a sibling? If so, since your diagnosis, what are some ways your siblings have been helpful? If you’re a caregiver and sibling, what are some questions you have about how to support your loved one? Please share with the community.
Becca Jones, MPH, CHES
Program Manager, Patient Services
Image: All Sizes
