Some things that I wish I would’ve known when I was first diagnosed:
1. Take a deep breath and try not to panic
A brain tumor diagnosis is probably one of the scariest things that will ever happen to you. Just know that even though it sounds like an emergency, more often than not, it isn’t. It certainly isn’t anything you don’t want to get taken care of sooner, rather than later, but there are so many options out there as far as treatments, doctors, hospitals, etc. Gather some information first (further detail in #2), before you make decisions. It is your body and you have the final word as to the direction you want to go. You will be dealing with some professionals that are very knowledgeable about your condition. They will give you their opinion. And although it may be a good and a right one, it would be best to do your homework first, if you can. Most of these doctors are incredibly swamped with the demands of their careers. They are just one person, and it’s not humanly possible for them to keep up on all of the latest treatments that are out there. Some can, but most don’t.
2. Get a second opinion!
I did not get a second opinion, and if I did, it would’ve most likely saved me an extra craniotomy. The first surgeon that I went to at a local hospital read my scan and said that there was a part of my tumor that was too close to the hippocampus, and therefore inoperable. So my first surgery did not remove the entire tumor.
The surgeon that performed my first surgery decided it would be best for me to get a second opinion from a bigger hospital (UCSF), to see what should be done about the remaining tumor. I’m not quite sure why he didn’t suggest doing this in the first place, but even their opinion about my scan was that it was too close to the hippocampus to be safely removed.
When I saw Dr. Linda Liau, my current neurosurgeon at UCLA, on Dateline, I saw the amazing work that she could do, and so I sent her my scan. She called back the next day and said that she could safely remove it. She very humbly said that “to my other surgeon’s credit, the tumor does look like it was bumping up against the hippocampus, but it really wasn’t”. She did perform the surgery and was successful in removing all visible tumor. Doctors will (or should) never tell you that they removed the entire tumor, because there will inevitably be cancer cells left behind that cannot be seen by the naked eye. Thus the rather high rate of cancer recurrence.
Here is a list of major brain tumor hospitals. These are the places that should be at the top of your list for consultations. Most will ask that you send scans and any corresponding reports, and then they will call you to discuss your case over the phone, or in person, if that is convenient. They may or may not charge a fee. Generally, insurance will cover this charge.
1. Duke University Contact: Dr. Henry Friedman
2. UCLA Medical Center Contact: Dr. Linda Liau
3. UCSF Medical Center Contact: Dr. Susan Chang
4. OHSU Contact: Dr. Edward Neuwelt
3. Keep a file of all of your medical records, including scans on CD
If you are like most cancer patients, you will have a handful of doctors working with you. Inevitably, one doctor will want to see one thing that another doctor ordered, but they didn’t receive their copy of it, etc..So if you have your own copies when these issues arise, you can essentially eliminate the middle-man, meanwhile avoiding a long, drawn out, frustrating process, and just give your doctor the information they are needing. It is also extremely imperative to have this information, if you want to get a second opinion. It is so much faster to be able to send out the information yourself, then to have to have one hospital call another hospital call the other doctor call the film library at another hospital….you get the picture. Whenever you have any testing done (i.e. bloodwork), get copies of it from your doctor (they are required to give this to you), and stick it in a file. When you have your MRI, tell your MRI technician that you need a copy of it on a CD before you leave. They will make you a CD as soon as your scan is done, and off you go.
4. Nobody cares about your life as much as you do. Keep the ball rolling!
One thing that took me quite awhile to learn, was that I cared more about my health than any of my doctors did. Don’t get me wrong. They are wonderful, compassionate people who are truly wanting to get you well, but they don’t have time to devote a lot of themselves to get you well. This has been discussed in prior points, but I can’t emphasize it enough. You need to do your own homework, whether that’s gathering information on the internet, talking to other brain tumor patients that have been or are going through the same journey, reading books or newspaper/magazine articles, watching Dateline, etc…Nobody cares about saving your life more than you do. For an example, I had a friend that was diagnosed a couple of years back with a Glioblastoma. These are extremely aggressive tumors, where time is always of the essence. Her local doctors weren’t exactly sure what her tumor type was, so they finally decided after awhile that they should biopsy it. By the time they biopsied it, it had already tripled in size. They then took their time in deciding what should be done next. Her doctors decided to confer with a bigger hospital, but paperwork and scans kept getting lost, there were communication gaps between her doctor’s office and the other one they were consulting with. It took them 3 whole months of that madness to finally decide that they were going to do surgery. Three months!!! This is for a tumor that statistically has a life expectancy of 6 months to 1 year. By the time they did surgery, the tumor had already crossed her mid-brain, making it inoperable. You have to be pro-active and not sit back and wait for things to get done. You’re more than likely to get lost in the ever-growing stack of paperwork sitting on your doctor’s desk, if you do. Be the squeaky wheel! Your doctor should have nothing but respect for your concern, and may even appreciate that you are taking some of the load off of their shoulders by doing what you can on your part to get the ball rolling.