The story behind Ted Nesi’s special report on brain cancer

Ted Nesi and his mother Anne at his graduation from Attleboro (Mass.) High School in 2003, right before her cancer diagnosis.Courtesy of Ted Nesi

Cancer has been in the news lately in Rhode Island.

Globe Rhode Island’s Alexa Gagosz recently wrote about how Rhode Island’s top cancer centers are getting ready to seek National Cancer Institute designation.

And today, Ted Nesi of WPRI will unveil a two-part special report about the most common and deadliest form of brain cancer: glioblastoma. For Nesi, a Target 12 reporter and the station’s politics/business editor, it’s a deeply personal subject: His mother Anne – a jazz fan, RISD-trained painter, avid reader, and an all around funny and wonderful woman, as her son describes her – died of glioblastoma in August 2003.

”Brain Breakthrough” will air this evening on 12 News: Part 1 at 5 p.m. and Part 2 at 6 p.m. It also will be available on the station’s website. Nesi answered a few questions for Rhode Map about it.

Tell me about this special report that’s airing.

This is going to be the 20th anniversary of my mother’s death from glioblastoma. I’ve watched over the last 20 years as research has and hasn’t progressed on it. We’ve seen famous people like Ted Kennedy and John McCain die from glioblastoma. They had all the access to the greatest care in the world, and there was still nothing to do for them.

So I was curious to find out the state of the research, and particularly some of the research actually being done here in Providence, to see what progress is being made on it. And then, to be honest, I remember one of the last things my mother said to me when she was dying was, “Please don’t forget me.” That has echoed in my mind as we hit 20 years and as I’m a dad now myself. This was a way to sort of remember Mom, give a little more meaning to her death, and then also journalistically look into a topic that I think is worth doing, regardless of any personal motivation.

You’re personally familiar with this disease, but did you learn anything surprising about it through your reporting?

My mom died very quickly, when I was 19. At the time, because I was young and so overwhelmed by it all, I didn’t engage that deeply in the science of the cancer. So it’s been cathartic to understand it more from a medical perspective. And the thing that has shocked me most as I did this research is how little progress has been made, unfortunately. What the experts I talked to kept saying to me is that they understand glioblastoma much better than they did 20 years ago, but it has been enormously hard to translate that into game-changing treatments that can extend lives.

Why is it so difficult to treat?

It’s because it’s in the brain. And our brains have powerful defense mechanisms to keep other stuff out, including medicine. So much of the research is into how we get past the blood-brain barrier and actually get medicine to people that will work. That’s where some of the most excitement is with the research that’s going on here in Providence and all around the world.

What are some of the big highlights viewers will be able to take away from this special report?

One thing, it’s about shining a light on glioblastoma. Patients and families say it’s a lonely disease. And I think that’s partly because the prognosis is still so dire. We think of all the cancers where enormous strides have been made in the last 20 years, where they have charitable walks and things like that. There’s a bit of that, but not a ton of it for glioblastoma. You certainly don’t hear about it as much. So one thing is just to help people understand what this is.

And secondarily, talking to some of the researchers about the reasons for hope – I went to the Lifespan Cancer Institute, where Dr. Heinrich Elinzano, who is an expert in glioblastoma, is part of a clinical trial for a vaccine. And I also went over to Brown University and spoke with Dr. Sean Lawler, who recently came down from Boston and is looking at all sorts of new ways to attack this tumor. Both of them did express a lot of hope that while there’s maybe been some frustration in the last 20 years, the next 20 years really could be different for glioblastoma.

This story first appeared in Rhode Map, our free newsletter about Rhode Island that also contains information about local events, links to interesting stories, and more. If you’d like to receive it via email Monday through Friday, you can sign up here.