Q. 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:
Q. 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:
Q. 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