Supporting Head and Neck Cancer Patients Beyond Their Journey

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Topics include: Patient Stories

Andrew Schorr interviews Chris Curtis, the leader of The Swallows Head and Neck Cancer charity, our partner, based in the UK. Chris was diagnosed in 2011 and after years of treatment and recovery is energized to push for better care, access to clinical trials and improved quality of life for patients worldwide.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners 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. 

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr.  Head and neck cancer is a rough go, but you can survive.  More people are, but there are side effects of treatment that people have to go on with for years. 

Joining me now is a fellow who knows very well and is a leader, becoming a leader worldwide as a patient, as an advocate, as a consultant to help promote understanding, and that's Chris Curtis, who joins us from Northern England.  Chris, you are the CEO or the chairman of the Swallows, the charity in the UK.  Is that right? 

Chris Curtis:

I'm the chairman of the Swallows charity in the UK.  

Andrew Schorr:

Okay.  Well, tell us, what is the goal of the Swallows? 

Chris Curtis:

The goal of the Swallows was always about support, awareness and education but mainly about supporting patients through their journey and beyond their journey. 

Andrew Schorr:

Okay.  So where are we now with head and neck cancer?  As I said, it seems like more people are surviving, but they may have disfigurement or eating problems.  And if I get it right, going back to, was it 2011 you were diagnosed, you had radiation and you had chemo and you had dissections, and I think you had a feeding tube for quite a while, too, right? 

Chris Curtis:

Yeah.  I was diagnosed in May of 2011.  I had radiotherapy, chemotherapy peg-fitted for almost three-and-a-half years, so I couldn't eat, I couldn't swallow.  I lost half my body weight over that period. 

I had depression.  Many a time I could have just got into my car and drove that into a wall.  At one stage, I was actually facing the wall, but then I saw the kids and the wife on the wall and backed out.  I just thought surely my family would be better off without me, because why would anybody want to put up with this grumpy old git that was going through all this treatment, and there's got to be something better in life. 

But, yeah, it was horrendous.  But would I do it all again?  Of course I would, because I'm alive.  So, but yeah more of as a survivor these days.  From around about, around—around the world, it ranges anywhere from 65 percent in New Zealand to almost 80 percent now in the UK. 

Andrew Schorr:

People surviving. 

Chris Curtis:

People surviving more than five years.  What I don't understand is if we can do 80 percent in the UK, why in the heck can't they do that worldwide?  My ultimate ambition is to get every country on the same as the survivorship pathway, because that means more people are surviving.  

Andrew Schorr:

And people living better as well. 

Chris Curtis:

Living, I would say, yes, they're living.  Would I say living better, maybe not.  Quality of life with head and neck in survivorship with all the side effects you're left with is not brilliant, but you're alive, you know.  My sister got diagnosed the month after me and died by that November.  So all the side effects and all the issues I'm living with, at least I've still got my family. 

Andrew Schorr:

But that's part of your goal, is not just more people living but you want them—you want the products, the appropriate care, the processes to help you to live better, and you're winning. 

Chris Curtis:

Quality of life is—can be the same route across the world, but what I want to do is get quality of life up.  For instance, in the U.S., you can get a drug for radiotherapy that will save you dry mouth issues.  In the UK, it's not available.  But people I speak to in the U.S. don't have as many issues with dry mouth.  As I speak to someone in the UK, that virtually 99 percent of us will suffer with dry mouth, and that's like eating cardboard.  

So if there's a drug available in the U.S., why the heck isn't it available in the UK?  It could be we're only a small cohort of patients against the bigger picture, but that doesn't make any difference if you're in that 30 percent of patients.  Those 30 percent of patients deserve just as much as somebody that is 100 percent in breast cancer.  Why should there be a difference? 

Andrew Schorr:

Chris, I want to ask you about the area of research.  We're trying to move medical science forward, but it requires the partnership of patients to consider being in clinical trials.  What do you tell patients these days about at least considering being part of trials to see if there can be better treatments?  

Chris Curtis:

See, the problem with clinical trials is the patient doesn't get told about them.  If the patient isn't told about them, how do they ask for them?  All they get told by the oncologist is you've got throat cancer, and this is what we're doing to you.  So unless that oncologist is very much into clinical trials, the patient never gets to know about it.  And if you don't know there are clinical trials, why would you research clinical trials?  

What we need to do is get people aware now that haven't got cancer that clinical trials is a very important part of the cancer journey.  If you can educate people now that haven't got cancer, God forbid they get cancer, that's when they'll start asking.  And I think oncologists, leaving it to the professional people is not going to work.  It's got to come from educating the public that are there now that know someone that's got cancer that can go to them and say, have you asked about clinical trials, because that could be a lifesaver.

Andrew Schorr:

Chris, I want to congratulate you for all the work you've been doing, and I'm so delighted that your health has improved.  And I hope with the energy you have—I know you're going on a worldwide tour to consult with hospitals and gather information, that you can help elevate worldwide this understanding so patients can do better.  Thank you for all you do, Chris. 

Chris Curtis:

Oh, thank you for having a chat with me.  Just another connection to make head and neck one of the biggest cancers in the world. 

Andrew Schorr:

Right.  Right.  Let's all have it do better.  Andrew Schorr in California and Chris Curtis in Northern England working together to help make a difference now in head and neck cancer.  Remember, knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners 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. 

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Page last updated on March 27, 2017