Brain tumor patients are hit on the head, literally, with a three-phase double whammy of physical and psychological trauma. First they discover that a motley and seemingly harmless crew of symptoms actually stems from a deadly and often incurable disease. Second, they must consult their doctors and volumes of contradictory information in order to decide on a treatment that has no guarantee of success even in the best of cases, and is likely to have painful side effects. Finally, after slogging through the treatment and suffering the medical fallout -- baldness, stomach cramps, perhaps empty bank accounts -- the patients become survivors. They leave the operating room heavy hearted, with unavoidable uncertainty about a future that could bring a recurrence of the disease.
Indeed, many survivors fall into depression after treatment ends. After going to frequent appointments during therapy and follow-up care, they begin to see their doctors less often, and receive less emotional support. Even so, they may still need time to become well again. In this stop-and-go situation, brain tumor survivors must begin putting their lives back together again, by exercising regularly, eating well, connecting with their friends and family.
Disease and treatment are part of a continuum, and it takes a long time to get well again. Therefore, it’s essential for brain tumor patients to seek out doctors they can trust. A leading brain surgeon and cancer specialist, Dr. Henry Brem of MGI Pharma, suggests that patients deal with their sense of helplessness by doing some research and asking questions of potential providers. A trustworthy doctor should be willing to share everything he or she knows about the options, and to help the patient work through them and make a well-thought out decision.
Dr. Brem proposes that new brain tumor patients (1) write out a list of questions to ask their care providers (2) take written notes on the answers, and finally (3) get printed copies of three documents -- the diagnosis, the pathology report, and the treatment plan. Some of the specific questions he proposes include - What are my treatment options?
- Tell me about the therapies doctors have used most often in the past for my particular type of tumor.
- What do you know about the latest therapies for this kind of tumor?
- Which treatments are the most likely to kill all the tumor cells?
- How much time do I have left to make a decision about treatment? Is there enough time for a second opinion?
- How early can treatment start?
- Does your medical center have specialized, valuable knowledge about the treatment of brain tumors? What types of therapies is it known for?
- Will my medical team include neuro-oncologists -- specialists in brain tumors? Can I talk to them if I need to? How often?
- How often does the specialist who will take care of my tumor perform brain tumor operations? How many times every week or every year? Is a brain tumor operation something he or she does often, or only once in a while?
- Describe the specialized equipment for brain surgery in your operating room. Do you have a computer navigation guidance system, for example? Do you have an operating microscope, an intraoperative ultrasound, or an intraoperative MRI? Will you be able to offer me additional therapy at the time of surgery, if I ask for it?
- When will I be able to return to all my daily routines? Can I go back to work soon after getting treatment, resume my normal activities, or will I need help at home or someone to stay with me? When I am recovering from the operation, will I need to enter an inpatient rehabilitation center, or will it be enough for me to get outpatient physical therapy?
- Which rehab programs do you know about, and what reputations do they have?
- Once I have completed surgery and chosen a particular kind of follow-up treatment, what side effects should I expect? Do I need to take any precautions, adopt any particular routines, or take certain medications in order to reduce the side effects?
- What should I do if the tumor comes back? Can I get treatment at the same facility, or will I need to be transferred to another clinic or hospital? Will I still be able to stay in touch with the doctor who treated me the first time?
- After my treatment ends, what resources will I have access to? For example, does your practice have an after-hours emergency number if my symptoms recur or my side effects become particularly brutal? How can you help me arrange for follow-up treatment?
- Can you put me in touch with other brain tumor patients who share some of my experiences? Can you recommend any support groups organized through your medical practice or the hospital where you practice? If you can't, do you know of any local support groups to which you've referred other patients of yours?
- What kind of life will I be living during and after treatment? Will I be depressed and foggy-brained for a long time, or can I return to my normal routines? Will I need to give up any foods or activities? How have your other patients dealt with their lives after treatment?
* This article is based on the information at http://www.braintumor.org, http://en.wikipedia.org/wiki/Brain_tumor, http://www.nih.gov, http://www.webmd.com/ |
