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Andrew Schorr:

Denise, there may be parents who are listening to this program and they’ve been searching in the middle of the night because cancer has been diagnosed or suspected in their child and they’re looking all through the corners of the internet for information, and where they live the medical community may be relatively unfamiliar with proton therapy or certainly unfamiliar with it in children.  What advice would you give parents as far as connecting with resources, getting accurate information and then maybe making the decision to get on a plane to go to a center such as M. D. Anderson where they do this? 

Denise:

Well, with us I know we joined an online support group.  It was a Yahoo! Group, pediatric brain tumors, and that was what convinced us to pick up from where we were living and travel to Houston.  Because we had parents online who had been through similar situations.  They knew of therapies, they knew of hospitals, they knew of doctors.  We talk about everything in our support group, so I would encourage any parent whose child is newly diagnosed to get into one of these support groups online because we’re out there and there’s people that understand what you’re going through.

Andrew Schorr:

But what about if in your local community, though, you have people maybe even doctors saying, I never heard of it and why are you going to uproot your family and, you know, this is…

Denise:

That’s actually a common response to it from a lot of doctors.

Andrew Schorr:

Yes, so what do you say? 

Denise:

I always tell the families that I talk to, you need to get a second and third opinion on not only a doctor but on the pathology.  You need to be in charge of your child’s medical situation.  Don’t rely on doctors to tell you what to do.  You need to understand what you’re getting into.  Because otherwise you’re going to look back and have regrets, and I didn’t want to have any regrets with my son.

Andrew Schorr:

Right.  Dr. Mahajan, now, you at M. D. Anderson I imagine you get calls from patients, parents, physicians around the country if not around the world.  Do you welcome those calls to say, well, we want to learn more about that case and let’s talk about whether we think we can help? 

Dr. Mahajan:

We do that on a daily basis, and I do believe that our knowledge, and we may actually have some insights into non-proton therapy options for certain situations, and that does come up on occasion.  But, yes, we are very open to discussing cases to try to help the patients and try to give information out.

Andrew Schorr:

So, Denise, one step would be where parents might call but if they have a doctor that they like but is unfamiliar with it they can also make that connection to get everybody on the same page, I imagine, as well. 

Denise:

My experience with a lot of doctors is that they, on my online discussions is doctors won’t make the call.  It’s the parents that have made the initial call.

Andrew Schorr:

Right.  Right.  Well, this program is called Patient Power.  You know where I’m coming from.  And I’ll tell you just my story.  I recap this every once in a while.  So I live in Seattle, and I did not know of any specialist in my leukemia here, even though it’s a very reputable medical community, and it was through an online community, just like you, Denise, connected with people with the same illness that I’d never heard of--and certainly brain tumors in children is a very uncommon, cancer is fortunately uncommon in kids--and it was those other people around the country and around the world who helped connect me with specialists, and in my case it was flying to Houston.  I’d never been there.  Denise, had you ever been there before? 

Denise:

I’d never been there.  I never thought I would travel to Houston in my whole life.

Andrew Schorr:

Right, because when I went there all I knew about was to go shopping for cowboy boots…

Denise:

And barbecue.

Andrew Schorr:

…and barbecue, and it turned out of course where for me too I think it was lifesaving technology and medical wisdom.  Well, Dr. Mahajan so we’re on a journey together.  A child may go through radiation for several weeks, and as we mentioned there could be other modalities like chemotherapy and there’s surgery that’s probably come into play.  Is it usually typical where surgery will be first? 

Dr. Mahajan:

Surgery. We rely on surgery to provide the diagnosis.  So typically at the very minimum there’s a biopsy.  I would say that most tumors if they can be removed completely it’s an advantageous thing.  However, sometimes it’s not possible, and so we proceed after biopsy with radiation and chemotherapy if needed.

Andrew Schorr:

And it could be that the tumor might be in a place where surgery is not really doable, if you will, too, right? 

Dr. Mahajan:

Correct.

Andrew Schorr:

So then radiation.  Now, might someone need proton therapy again?  So could you have a course, unfortunately, maybe down the line, there’s some tumor that shows up again, that it could be repeated? 

Dr. Mahajan:

Yeah, it’s a challenging situation because a lot of questions need to be answered and part of it would be where it did it come back, why did it come back, when did it come back.  And given the right set of circumstances repeat radiotherapy could be recommended.  But of course at any point in time such as that we would consider all of our different options again including surgery or chemotherapy and/or radiation.

Andrew Schorr:

Does having proton close off any options? 

Dr. Mahajan:

Not really.

Andrew Schorr:

Okay.  Well, you must be very encouraged that you have this tool.  It hasn’t been around a long time.  And also it’s a busy place now, right?  Since M. D. Anderson has had it it’s sort of been in full swing, right? 

Dr. Mahajan:

Yes.  e’ve had a very, very active program in particular for children over there, and since our first patient back in August of 2006 we’ve treated about 300 kids, kids being patients under the age of 18.  We’ve had great results, nothing unexpected, and we’re again following our patients for studying and trying to get a better sense of the reduction in late effects.  And we cooperate with all the cooperative groups.  So patients on trials through Children’s Oncology Group or PBTC, which is another cooperative group, we have access to those trials with protons. 

And another exciting development we have is the use of the pencil beam, which is going to give us better control and possibly even further reduction of dose to the normal tissues.  So a very exciting time.

Andrew Schorr:

So when you talk about the pencil beam, making it yet more precise. 

Dr. Mahajan:

Correct.  So the current technology in most centers, all but one in the world, they’re using what’s called a scattered beam, essentially.  It’s as if you’re using a diffuser to generate the radiation field that needs to be delivered to the patient.  With a pencil beam it’s almost like using a marker, and we’re coloring in the area of concern and by doing that we are able to remove some of the hardware that’s in between the nozzle and the patient, and that does reduce some of the scatter radiation that we know exists.  And so it’s a further advance that will allow us to be even better and hopefully provide even a better therapeutic index for treating our patients.

Andrew Schorr:

Wow.  Well, all the best to you, Dr. Anita Mahajan, with the work you do, your dedication to patients, children, parents, families, and may there be more stories like Matthew’s.  Denise Rager, I want to just find out now what you’d say as a final word to parents who may be listening where there’s a diagnosis like Matthew received and trying to decide what to do. 

Denise:

Just I always tell people no regrets.  You want to make sure you research everything, that you understand everything, you can actually understand what the doctors where saying to you.  Research all your options, get lots of opinions and move forward.

Andrew Schorr:

Well, I hope you move forward for many years and dance at Matthew’s wedding, okay?

Denise:

I hope so too.

Andrew Schorr:

And that he’ll be reading his kids bedtime stories, right? 

Denise:

That’s my prayer.

Andrew Schorr:

That’s our prayer too.  Thank you so much for being with us.  You tell that little boy all the best for us, okay?

Denise:

Thanks.

Andrew Schorr:

And thank you, Doctor, for being with us, too. 

Dr. Mahajan:

Thank you.

Andrew Schorr:

And thanks to M. D. Anderson for being such a long-time sponsor of Patient Power.  I get to meet great inspiring professionals, parents, and patients, and it just moves my heart, it really does.  I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all.  Thanks for joining us.   

Please remember the opinions expressed on Patient Power are not necessarily the views of M. D. Anderson Cancer Center, its medical staff or Patient Power.   Our discussions are not a substitute for seeking medical advice or care from your own doctor.  That’s how you’ll get care that’s most appropriate for you.