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Advice for Others

Program: The ABC's for Primary Brain Tumors
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Andrew Schorr:

Well said. Now, Darren Latimer has been listening patiently as he waits for his plane in Los Angeles. Darren, so you didn't want to be an expert in brain cancer, but you've been living it and you've also got involved in fundraising. What advice would you give? There are people listening now where this has crashed into their lives or that of a loved one. What would be some advice to you? What's helped you? What's helped your family so that you could get the proper care and then hopefully move on?

Darren:

Sure. Well, looking back at it we took a pretty good route but I think what you have to do is you have to get involved early and often and get on this right away. Whether that's getting opinions, multiple opinions, single opinion, but get to a brain tumor center of real excellence and not a local hospital, or as Dr. Raizer said find people who do this for a living every day. And get educated. And if that means getting on the internet or talking to people, figure out how to get educated.

And probably most importantly you've got to be your own advocate. You're your best advocate and this is a full time job, and you have to manage it. If you ignore it won't go away. So it's got to be attacked and it's got to be isolated and it's got to be understood early, often and ongoing. And you don't have to get up and raise money every day for the cause, you don't have to go on walks for the cause, you don't have to read a poem about your story and your saga, but you've got to focus on yourself and you're your best friend in this and you and your loved ones have to be a team here.

Andrew Schorr:

Now, Darren, Allison must have said to you at some point when you admitted that you were having headaches you weren't telling anyone about, why didn't you go to the doctor earlier? Why didn't you tell us? So there's somebody out there maybe now who is listening on the internet who has not told anyone and not going to the doctor. You said you even delayed going to the eye doctor for five months. What would you say about listening to your body and whether you tell your whole family or not at least getting checked?

Darren:

Well, listen. Listen to your body. There is no downside to doing it. Go early, get it done, get it checked out. Have either regular checkups with your regular doctor or fight this, and you have to listen to your body because it doesn't lie. And listen, this whole process is really an art based on science and you need the best artists. At Northwestern that's what we've got, so I'm really glad that's where I landed because early and often, we've been able to do this for four years and a lot longer than this. So that's where we are. But if you're thinking about it every day and you don't want to do it, you just have to get off the horse and call a doctor and do this because these are the guys who know what they're talking about.

Andrew Schorr:

Right. I agree so often and I know you're a busy guy, so many of us are, and you don't want anything to get in the way, but you were getting the message and you needed to finally answer it, and I know you're glad you did with a good team.

Dr. Raizer, Darren mentioned about the statistics and before we take another break I just want to ask you about that. So people sit in front of you every day and they say, Doc, what are the statistics because everything I've read looks bad, but here's Darren who is doing well. Should somebody say, I'm just a statistic, or can they say, I am an individual and hopefully I can do well with the right team? What do you tell them?

Dr. Raizer:

I'm actually one who doesn't really give statistics unless patients just say, I really want to know, because I actually don't find on many levels a whole lot of value to it. A, bursting someone's bubble doesn't really help. You want them to have hope to be able to fight. Secondly, as I always tell my patients, statistics are statistics, but they tell me how a group does. They don't tell me how an individual patient does. So I don't know how any one certain patient I take care of is going to do. I may have numbers in my head but I've got many patients that do and are doing a lot better than statistics would say that they're supposed to be doing. So they don't seem to have a whole lot of weight to me.

Certainly, as you said earlier, many people do do what the statistics say, but many don't. We're not quite good enough yet to figure out who those people are and optimize their treatments, but I think the best thing to do is to say this is something that can be treated and there are people who are cured of it and that's the avenue we've got to take and not necessarily just say, okay, well, you know, this is your clock and, I've had many patients who sort of, you know the TV show Beat the Clock, will come back and say, okay, so I wasn't really supposed to be here, now I'm here, what am I supposed to do. I don't necessarily feel bad for them in the sense that they're still with us and I'm happy for that because that's what I'm trying to do, but it just holds to the point that statistics don't really point out what any one person does.

Andrew Schorr:

Right. So well said. And so why are you here? Well, to enjoy your life and like Darren enjoy his family and he enjoys what he does and so keep on keeping on. We're going to take another break. When we come back we're going to hear some other comments before he has to run for the plane from Darren and some other advice for families dealing with this as he's been giving along the way. And also we'll pose some questions to Dr. Jeffrey Raizer, and you are welcome to send more in or call 877 711 5611 or an e mail to nmh@patientpower.info. We will be right back.

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