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Matt Phillips's avatar

So my best friend became horribly depressed a few months ago. We had just come back from watching Michigan win the championship and staying at the team hotel with my nine-year-old grandson. We met the entire team. he never mentioned the headaches.

He went to his pcp and was given meds . I asked for a CT (doc refused) . A week later he "forgot how to walk" . His wife took him to our heart hospital and 30 min later he had the dx of GBM. My neighbor is oncologist and saw him and said leave Austin. Go to Chicago where they are aggressive doing surgeries while awake to maximize resection and minimize disability. The care locally was basically the same medicine they used since 2005, CT scans in a few months and then hospice. This was sort of this summation of my oncology colleague . It's out of my wheelhouse obviously.

He's now had three surgeries and two cyber knives since diagnosis. His complex imaging shows no active tumor for now.

On the way to Chicago we saw another 44-year-old bald man with multiple scars. He lives just a few miles from my house and we met him. He has five children and now is status post three surgeries and is cancer free. He is two years post diagnosis.

So we're living in real time with this. I am a cardiologist retired and I flew to Chicago with his wife to meet the team. My best friend had taken no medicines at age 72 prior to this diagnosis .

I wanted to be sure he wasn't going to get on the train to nowhere filled with chemo that we used to call "rocket fuel" in residency. I am 67 and I know advances are amazing in all aspects of medicine even in my lifetime, but reading this article reminds me of "rocket fuel" of the past.

Rather than hospice, they always came up with something which had horrible side effects and led to the same outcome.

I could not become an oncologist and God forbid a pediatric oncologist.

I was incredibly impressed with the Chicago team. It was medicine the way it should be. They review all the images done on Monday radiologist, oncologist, and surgeon.

On Tuesday, you sit in room with those three physicians high-tech screens both to look at images and to draw pictures as well as social workers and the nurse practitioners who are your case managers.

They spent over an hour with us reviewing the ideology of Glioblastoma, which, interestingly, they believe has a relation to pollution and nasal inhalation. It appears the one good part about growing up with bad allergies and constant runny nose is it reduces your risk they believe of this horrible disease.

They believe the disease sort of takes a life on its own. It fights back and they use a combination of advanced genetic analysis, frequent imaging and surgery done under local anesthesia. That's correct local anesthesia to remove the tumor.

The program is funded, obviously giving them the time to truly have a team to sit in the same room and discuss and manage patients. It's a far cry from my neighbor seeing 40 patients a day.

So where does randomized large control trials come in ?

Ideally, as often as one can but at the same time if we're going to be aggressive with these devastating diseases, I would think we should spend funds to create the centers of excellence and pay for the travel.

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Mary S. LaMoreaux's avatar

I think the biggest problem is that people do want to believe that they can stop death and they do not realize the cost. The pricing system is so screwed up because in order to get $50 doctors must charge Medicare $100. When people see the bill for $200,000 but Medicare only pays $30,000 they have no idea the true cost. I do not believe it is the financial wants of the oncologist. Because oncologists had to join in groups just to afford to buy the drugs, they no longer know the financial incentive. They are now employees. The Affordable Care Act had so many adverse effects on the healthcare system.

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