Note - this is the old version of the guide.. click HERE for the current version!
Things Every Brain Tumor Patient Should Do
Being diagnosed with a brain tumor or having a close
friend or family member diagnosed with a brain tumor is something nothing
can prepare you for. From our experiences, here is a list of things
that will help you.
1. Get copies of MRI films, MRI reports, and pathology reports.
It is often less expensive to ask for copies of the
films when the MRI is being taken than to get copies made later.
Although you should not try to interpret your own films, having your own
copy of your films and reports makes getting second opinions and switching
doctors much easier, faster, and sometimes cheaper. Also, being run
by humans, hospitals do sometimes lose things. Even a temporarily
lost film can mean loss of your precious time.
2. Get second, third, and even fourth opinions.
Even if your insurance limits your options,
you can still get opinions. There are many reasons to get multiple opinions.
First, it confirms your diagnosis. Especially if your primary doctor
does not see a lot of brain tumors it is important to at least consult with,
and ask your doctor to consult with, major brain tumor centers. Second,
it helps you find a doctor you can trust. Third, it expands your
treatment options. Fourth, it will give you peace of mind later to
know you have left no stone unturned. It is also worthwhile to get a second opinion on the reading of your pathology slides at a major brain tumor center. There is a lot of variation on how the slides are read, and some tumor types are treated differently and have a very different prognosis.
3. Keep a diary.
There are many things to write down, even if the
tumor does not affect your memory. You will want to keep track of
symptoms, drug side effects, doctors spoken to, treatments investigated,
treatments done, and conversations with doctors. You may also want
to use a diary to keep track of your feelings and to help you cope with
your disease.
4. Ask about clinical trials.
For many types of brain tumors, there is no
known cure. Clinical trials are experiments for new treatments.
Clinical trials are the best way for you to get new experiemental treatments.
Moreover, the only way to move closer to a cure is for patients to participate
in well-designed trials.
5. Have someone come to doctor's meetings with you. Record
what is said.
Every doctor's meeting can contain shocks.
You will not always be able to listen to or understand what your doctor
says, and you may not even know that you can't think of the questions you
want to ask. Doctors are not always aware when they speak in medical terms
or use normal English words in technical ways. Having another person
there helps in many ways. You can compare what you think the doctor
said. You have emotional support, if you need it. Other people
will think of questions you may not.
Another good habit to have is for you or your companion take notes on the points covered in your meeting. That way,
you can review later what your doctor says. You may have forgotten
a detail or you may realize that you didn't understand something as well
as you thought at the time. You may even want to
consider taping the meetings if your doctor will allow it.
6. One day at a time
Don't worry about next month or even next week.
Take things one day at a time until you get your feet back under you.
7. Get in a group.
Support groups are an essential part treatment and
recovery. Not only do they provide psychological support, but they
are can also be a great source of information on treatments, nutrition,
money, etc. Many hospitals run cancer support groups, and there may
even be a brain tumor support group in your area. You should consider
subscribing to one of the brain tumor mailing lists. A mailing list is a way for people with a common interest to communicate on the internet using email. An email sent to the group goes to every person subscribed to the group. When you respond to it, your response goes to everyone in that group.
8. Join the Virtual Trial. This is a study being done by the Musella Foundation For Brain Tumor Research & Information, where we just observe and record whatever treatments you and your doctors decide to try. We do not tell you what to do or limit your choices in any way. The concept is to try to find combinations of treatments that may work better than anything we have. Most patients try multiple treatments, and currently, nobody is tracking the outcomes of the interactions of these treatments. We are trying to! If we find something interesting, we will do a traditional clinical trial of that combination of treatments!
This project also forces you to keep better records for yourself, which you should do anyway. Participants can also view the ongoing results.
9. For those who believe in the power of prayer, Click HERE for information on a NIH-funded study on prayer that is seeking newly diagnosed glioblastoma patients. And click HERE to add your name to our prayer list!
If you have a tip to share with other brain tumor patients, let us know
so we can add it to the list.
Last Updated: 7/10/2003
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