Seeking Additional Opinions

An oligodendroglioma patient will usually receive a better prognosis at the time of diagnosis than will patients with other forms of gliomas. This is because oligos tend to grow slower and are also known to be more responsive to certain treatments than are other forms of gliomas. If a patient's symptoms are able to be controlled through medication and the tumor does not appear to present an immediate risk to the patient's neurological functioning, then there is usually plenty of time for the patient to do research and seek opinions from other doctors and medical centers.

There are many great references on the web for finding brain tumor centers and doctors who specialize in treating brain tumors. The Oligodendroglioma Online Support Group is also a great place to turn for advice from people who have already been through this process. Perhaps the best place to go to find contact information for doctors and brain tumor centers is VirtualTrials.org. At that site you will also find an excellent guide for newly diagnosed brain tumor patients. That guide contains various tips for maintaining and organizing all of the various information associated with your tumor. I will not repeat the information in that guide, rather I will try to add some useful tips that I've picked by going through the process of getting opinions for my daughter, who was diagnosed with an oligodendroglioma in 2006.

The one thing that cannot be overstated is just how important it is to go to major brain tumor centers and/or doctors who specialize in brain tumor diagnosis and treatment.

Most brain tumor centers practice a multidisciplinary approach to brain tumor treatment. That means that they use a group of specialists, often referred to as a "tumor board", to review patient's cases and decide on the best course of treatment. If you want a tumor board to review your case you will probably need to pay a fee for their evaluation. The fee is usually pretty reasonable and they will tell you exactly what they need from you to in order to be able to review your case.

Often, you can find doctors who are willing to review your case themselves and give you their personal opinion without having to go through a complete tumor board evaluation. Getting these opinions requires some tact and consideration. My strategy was to make it as easy as possible for the doctors from whom I requested opinions. I did this by making sure that I sent them the information and materials they needed and I made personal contact with them or their offices to make sure that I was not overlooked.

To prepare for this process you should start by making copies of the information and materials that you know the doctors will need. The materials I prepared were:

• Patient's Personal Information Sheet
• MRI Scans on CD
• MRI Reports
• Pathology Reports

Make sure to have mailing materials including disk mailers or sleeves to protect disks inside of a larger envelope. Cardboard UPS or FedEx envelopes usually provide enough protection to allow disks to be mailed without damage but it's a good idea to put the disk into some sort of protective sleeve before inserting it into the envelope.

Some doctors also want to see actual pathology slides if they exist. This was the most difficult thing to provide because they are limited in number and not usually in your possession. If you've had a biopsy and the hospital has pathology slides, you will need to know how to contact that department in your hospital and request that they send the slides to another doctor. You should also follow up to make sure that the slides get returned to you or the hospital if possible.

If you have all of this information prepared and ready to go, it will be very easy to send it to a doctor that agrees to review it and you will be less likely to procrastinate.

Patients Personal Information Sheet

This document is perhaps the most important of all the materials to prepare. It's easy to make copies of disks or to copy paper reports but if you have to create a new letter everytime you want to send out more information, it can become the one obstacle that prevents you from making as many requests as you'd like to. Chances are, you're going through enough turmoil at this point to make a seemingly simple task, such as creating a letter or document with all relevant information, feel like a monumental task. If you create one document that has all of the information that any doctor might ask for, you can just make copies and have it handy to include with your other materials. The information you should include in this document is listed below:

• Patient's Full Name
• Patient's Address
• Patient's Phone(s)
• Patient's Email Address
• Contact informaton of advocate or caretaker if they are the ones who will be communicating with the doctor
• Patient's Medical Insurance Information
• List of any medications the patient is currently using
• List of any treatment the patient has already undergone
• List of doctors who have treated the patient
• Address and contact information of the hospital where the patient was treated
• Description of event and symptom's that led to diagnosis
• Description of any currently existing symptoms
• General information about patient's occupation or lifestyle
• General description of patient's current condition and any other medical information about the patient that could be relevant
• Any information relevant to contacting the patient or the person acting on the patient's behalf

Having all of this information in a well organized easy to find document is good for you to have not only for getting opinions but for you to refer to while communicating with doctors. Always keep a copy of this document handy when visiting doctors or making phone calls to doctor's offices or hospitals.

Making Contact

Perhaps the most important step to take is making that first call. I found that phone calls were generally more effective than emails for contacting the doctors I wanted to reach. You can usually find a phone number online for a doctor that will get answered by someone on his or her staff. When you make this call, be prepared to ask your question in a simple yet precise manner. Be prepared to answer questions intelligently. You'll be amazed at how helpful these healthcare professionals can be when they feel as though they're speaking with a knowledgeable person. Read your reports and familiarize yourself with the language that these professionals speak. You'll be amazed at how responsive most of them will be.

An example of what I would say when contacting a doctor's office is: "Hello, I'm calling because my daughter was diagnosed with an oligodendroglioma, grade 2, in her left frontal lobe in March of this year. The doctors at the local hospital feel that it would be too dangerous to attempt to resect the tumor. I'd like to get Dr. XXXXXXX's opinion about the best course of treatment for her. How can I go about getting her information to the doctor?"

In most cases, I was able to get an address and specific instructions about what to send. Often, I would speak with a Physician's Assistant or a nurse who would be very empathetic and would offer advice freely. A very important question to ask is: "Who can I contact to confirm that the doctor has received the materials I'll be sending?" This is criticla! Doctors and their staffes are extremely busy and will ignore many things that are not on their schedules. You have to call within a day or two of when you expect the package to be delivered. You have to keep calling every couple of days after that as well. Don't become a pest, just ask politely if the doctor has had an opportunity to review the information. Remember, if they're doing this free of charge, they don't have to do it at all.

After that, all you can do is listen to what they have to say and decide who's advice you want to follow.

Good Luck! I hope you hear something good!