Q. I'm looking for resources for a family member who was recently diagnosed with a brain tumor. I'm not sure what they might need, but thought I could send along a list and let them decide what could help.
I’m sorry to hear that your family was recently confronted with a diagnosis of a brain tumor. I have put together a comprehensive list of brain tumor resources that will be helpful in addressing their needs and guiding your loved one to other resources.
I’ll begin by highlighting the services of CancerCare (800-813-4673). Our masters degreed oncology social workers help patients and caregivers deal with any cancer diagnosis. The services are free and can include: limited financial assistance; individual, online, and telephone counseling for patients and caregivers; support groups; educational workshops and publications; and referrals. The challenges of cancer are daunting and for many it is helpful to start the process with our social workers who can help you develop a plan.
Here are specific resources that may offer additional help:
- American Brain Tumor Association, 800-886-2282
Goal is to eliminate brain tumors through research and to meet the needs of brain tumor patients and their family. ABTA CommYOUnity Connect pairs brain tumor patients and caregivers with mentors who have been through a similar situation.
- National Brain Tumor Society, 800-934-2873
Dedicated to promoting a cure for brain tumors, improving the quality of life, and giving hope to the brain tumor community by funding research and providing patient resources, information and education.
- The Elliott Foundation, 800-574-5703
Provides patients with access to advanced treatment options, specialists & comprehensive support programs, as well as support & guidance concerning the needs of patients and their caregivers.
- The Musella Foundation For Brain Tumor Research & Information, Inc.
Helps brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research.
- Brain Tumor Foundation, 212-265-2401
Guides and supports patients, families and caregivers touched by a brain tumor. BTF also raises awareness about the need for the early detection of brain tumors.
- Children’s Brain Tumor Foundation, 866-228-4673
Serves children and families nationwide affected by both benign and malignant brain and spinal cord tumors. Provides information and support delivered online and via a toll-free line by licensed pediatric oncology social workers. Offers a Parent-2-Parent Network and provides recreational activities for families.
- Mission4Maureen, 440-840-6497
Provides financial assistance to children under 17 years old who are burdened by the cost of brain cancer treatment. Assistance may come in the form of rent or mortgage payments, help with the electric or gas bill, or gift cards to a local supermarket to help with the cost of food and medicines.
- Pediatric Brain Tumor Foundation, 800-253-6530
Programs include free educational information about brain tumors and a college scholarship program to ease the financial hardships of a childhood brain tumor diagnosis and help survivors reach career goals.
- The Friends4Michael Foundation, 815-401-8689
Provides assistance, including financial, to families across the country whose children are fighting a brain tumor.
- National Children’s Cancer Society (NCCS), 314-241-1600
Provides emotional, financial and educational support to children with cancer, their families and survivors.
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Answers from Other Experts About Brain Cancer
My mother has cancer in the brain, and she is acting like a completely different person, not her normal friendly loving self. During the holidays, how can I cope with basically sitting at the dinner table with my mom not being herself?
Caring for family is a natural part of our life journey, and the care that we give, even when challenging, offers us a way to bond with loved ones. It may help to have people with you who can support and comfort you as you look after your mother. Having a friend at hand who is there for you could help alleviate your feelings of stress. Ask other relatives or friends of your mother to spend time with her, so that you do not bear all the weight of her needs. It may be helpful to focus on what there is to be grateful for, such as your mother’s presence, having friends and other family, and that you are together and safe. You may not be able to change your mother’s behavior, but you can schedule time for yourself to do things that will bring you joy.
During holiday time most of us would like to experience the same comforting things that we have had in years past, so it stands to reason that it would be difficult to cope with changes you are seeing in your mother. It would be helpful to know whether the changes in her behavior are the result of a physical change to her brain or are the consequences of fear and anxiety about her diagnosis.
- A person diagnosed with a brain tumor may exhibit changes in behavior and thinking that may include mild memory loss, mood swings, or intense emotional outbursts. Where the tumor is located, the type of medication (such as chemotherapy and steroids), and the amount of stress that a person is feeling could cause these types of changes.
- Talking with your mother, asking her what she is thinking and feeling, is an important first step. Is she aware that her behavior has changed?
- Then, discuss changes in personality or behavior with her doctor to rule out a medical cause and make any adjustment to medications if that is needed. The change in her personality may be a sign that she is struggling emotionally with her diagnosis. A brain tumor diagnosis can bring up many feelings, including anxiety, anger, or sadness. Since you are a person who your mother is close to and who she feels safe with, those feelings may be directed towards you. Letting her know how her behavior is affecting you and seeking support can be very helpful.
My cousin found out that his 4-year-old daughter has brain cancer and it could be terminal. What can I do or say to help him (and his family) through this difficult time?
It can be hard to know what exactly to say or do when a loved one is facing cancer, especially when you are supporting both the parents and a child through a difficult time.
What can I say? Parenting a child with a serious illness can be a painful and isolating experience, so being available to listen, talk, and giving your cousin the opportunity to discuss his feelings and fears, if he wants to, can be helpful. Giving him time to talk about everyday things can be just as helpful too. Your cousin will probably best know the emotional and developmental needs of his daughter, so it’s okay to ask him how best to support her through this. CancerCare’s fact sheet “What Can I Say to a Newly Diagnosed Loved One?” offers additional tips for being supportive to a loved one facing cancer.
What can I do? Ask your cousin what would be most helpful to him during this time. If the family has many practical caregiving needs, they may appreciate help from family and friends. My Cancer Circle™ is an online resource where you can create a community for your cousin’s family and organize support.
Care for yourself. While your cousin is facing difficult times, it is important that you recognize how an illness in the family may be affecting you too. Make sure that you take time to care for yourself, so you can be a stronger source of support for the family.
Get informed. For more information on brain tumors and what to expect during treatment, both the American Brain Tumor Association and National Brain Tumor Society offer invaluable information. The National Children’s Cancer Society is also a good resource for children facing cancer and their families
My husband was diagnosed with a brain tumor earlier this year, and I've noticed a change in his behavior. He can be short-tempered with me and not very nice to our children. I know he is under a lot of stress (he is trying to continue to work while receiving treatment), but I'm worried things will get worse. Is there any connection between his cancer and/or treatment and his behavior?
When a person is diagnosed with a brain tumor, changes in behavior and thinking occur in most patients at some point during their treatment. Changes in behavior may include mild memory loss, mood swings, or intense emotional outbursts. Tumor location, medications (such as chemotherapy and steroids), and stressful life situations can influence behavior. The first step is for you and your husband to discuss these changes. Have you let him know that you feel his behavior has changed? He may or may not be fully aware of these changes.
The second step is to share any changes in personality or behavior with his doctor to rule out a medical cause and make any adjustment to medications if that is needed. The change in his personality may also be due to the stress he is under and a sign that he is struggling emotionally with his diagnosis. A brain tumor diagnosis can bring up many feelings, including anxiety, anger, or sadness. As your husband’s primary caregiver, those feelings may be directed towards you since you are the one he is closest to and trusts. Letting him know how his behavior is affecting you and the family and seeking support can be incredibly helpful. If you are having trouble communicating, couples counseling may help. It may also be helpful for you as his caregiver to have added support at this time. Seeking counseling, joining a support group, talking to a trusted friend or family member, or even writing in a journal can help.
Finally, here are some publications that may also be helpful as you care for your husband:
A family member has been diagnosed with a brain tumor and I want to make sure he is going to get the best care possible. How can I find out about the best places that treat brain tumors?
There are many factors to consider when choosing a treatment center, and it’s important to weigh all of your options before deciding which treatment center is right for you or your loved one. While many treatment centers provide excellent care for patients diagnosed with cancer, you will want a center that has experience treating brain tumors. Important questions to ask include:
- How many brain tumor patients does the treatment center diagnose and treat per year?
- How many tumors has your doctor treated and what are your doctor’s credentials?
- Does the treatment center have a specialized neurology department including neuro-oncologists, neurosurgeons, rehabilitation therapists, as well as other specialists?
- Does the treatment center have a brain tumor board (a board of specialists who regularly meet to discuss patients, their treatment and their overall health)?
- Does the treatment center have the appropriate technology to provide optimal care including imaging equipment?
- Does the treatment center participate in clinical trials? Clinical trials are research studies that provide new treatments to patients through medications or other therapies. These studies answer important medical questions related to cancer treatments and also may provide important health benefits to patients participating in the trial.
Rehabilitation services are also an important part of treatment for patients diagnosed with brain tumors. Patients may experience temporary or permanent changes in speech, memory or motor skills as a result of the tumor. Rehabilitation therapy can help tremendously with these side effects. Rehabilitation specialists include speech therapists, physical therapists, and occupational therapists. Questions to ask the treatment center include:
- What rehabilitation services are provided?
- If services are not provided at the treatment center, what referrals does the center provide?
Comprehensive care is an important factor when choosing a treatment center, as a brain tumor diagnosis can affect many aspects of a patient’s life. The idea behind comprehensive care is that all of the patient’s needs are treated, which can include financial, medical, physical, emotional, and spiritual needs. You may want to ask:
- Aside from medical treatment, what other comprehensive services does the treatment center provide?
- Does the treatment center provide support services to both patients and caregivers including counseling, support groups and spiritual support?
- Are workshops, literature related to care or other learning possibilities available at the treatment center?
- Is financial support or referrals for financial assistance available?
For further information on finding a treatment center please contact the following organizations:
- National Cancer Institute (NCI) offers a database of NCI-designated cancer treatment centers organized by state.
- Society for Neuro-Oncology provides a database of brain tumor centers organized by name of institution.
- National Brain Tumor Society maintains a comprehensive website dedicated to helping patients and families diagnosed with brain tumors. Read their fact sheet, Issues to Consider When Choosing a Treatment Center
And finally, these CancerCare publications might be helpful: