Video transcript
Innovations in Dental Care Part A
The Head & Neck Cancer Innovations 2020 Video Series is brought to you by St Vincent’s Hospital Sydney & The Kinghorn Cancer Centre. In this episode we talk to ENT nurse practitione Tracey Nicholls about innovations in the dental treatment of head & neck cancer patients. For more information please visit our website or our You Tube channel. The podcast versions can be found on our SoundCloud channel.
Julie McCrossin
Hello, Julie McCrossin back with you. And this is a video on innovations in dental care for the head and neck cancer patient. And it’s part of a series of videos where we’re looking at changes in care, improvements in care, to improve survival, but also the quality of life for head and neck cancer patients. And thank you so much for taking an interest in dental care, which is so important as you know, for the head and neck cancer patient.
Julie McCrossin
And it now gives me great pleasure to introduce a nurse who’s traveled all over Australia, as well as working all across South Australia, and who has worked for many years, advocating for and caring for head and neck cancer patients. So welcome to you Tracey. Can you tell us your name and your title and, in a nutshell, what you do for a job?
Tracey Nicholls
Thanks, Julie. Thanks for having me. My name is Tracey Nichols. I’m an Ear, Nose and Throat Nurse Practitioner, Head and Neck Cancer Coordinator at Flinders Medical Centre in Adelaide, South Australia. Been around ENT for probably about 28 years. And the last few years dedicating my experience and knowledge to caring for our head and neck cancer patients.
Julie McCrossin
Why are you so passionate about the care of head and neck cancer patients because I know you do a lot of things that are really in the advocacy, trying to improve our care? What touches you so deeply about our needs?
Tracey Nicholls
I think the head neck cancer patient are the patients that are, kind of, not forgotten, but certainly, there’s not as much information, or knowledge, or even care pathways for the head neck cancer patient, as we find with our prostate cancer or our breast cancer patients. And I’m not making light of any patient that has a cancer diagnosis.
But I think for the head neck cancer patient, it affects just every aspect of our being. It affects how we communicate. How we swallow. How we socialize. And in some cases, our general appearance. So I think as a cancer, itself, this is just a horrible, life-long cancer that our patients have to live with.
Julie McCrossin
I always say, it’s a tough gig. It’s a very tough gig. You mentioned the term “care pathway”. Can you explain what you mean by that and an example of how you might use that with one of your head & neck cancer patients?
Tracey Nicholls
So I guess it’s about every centre having a multidisciplinary team. So that a patient that is diagnosed with a head neck cancer has all aspects of professional involvement in their care, so that their pathway and their care accommodates all their needs.
Julie McCrossin
Just before I asked you some more questions about your direct work with head and neck cancer patients, particularly focusing on the dental side, you’re a specialist head and neck cancer nurse. We know about them with breast cancer and I think now, with prostate cancer, we have over 40 specialist prostate cancer nurses. Do we have enough head and neck cancer specialist nurses in Australia?
Tracey Nicholls
Certainly not Julie. I was the first in South Australia and that position was created by a very innovative head of unit. We since have another in South Australia. But two in one state certainly isn’t enough with the amount of patients that are diagnosed with head and neck cancer here in South Australia.
The roles that I’ve been able to find around Australia they usually have a mixed cohort of patient, cancer patients, that they deal with .But certainly not enough head & neck specialists.
Julie McCrossin
So when you say a “mixed cohort”, the nurse coordinator I had looked after head & neck cancer patients, but she had patients with other sorts of cancer to look after as well.
Tracey Nicholls
Some of the larger specialist centres around Australia, and I was fortunate enough, when I started in this role, to visit, do have a head & neck cancer specialist. But the roles are very, very different. And I think because the numbers perhaps aren’t as large as other cancers, institutions don’t look at them as needing to have one person manage that role.
But I think one of the things I find is a lot of my time is spent managing our rural remote patients, when they have to leave where they live, to come down to a city centre to have their treatment.
And the coordination of those patients and their needs just takes an incredible amount of time. So that they’re not coming down one week to see the dentist. The next week to see the audiologist. And then the next week to see the specialist.
So it takes, I mean that’s one aspect of the role, but it takes a fair amount of just coordinating that. The patient’s journey is tough enough without having to come down to the city, leaving home family and supports, not to mention the expensive at all, to come down multiple times, before treatment even starts.
Julie McCrossin
Tracy let’s turn now to the dental issues. That is the focus of this particular video. I’d like to look longer term. With Sharon Liberali, our Special Needs Dentist earlier on in this video, we looked at many of the acute needs. But longer term, in your experience, what are some of the most distressing side effects that affect particularly the oral and dental health of a head and neck cancer patient?
Tracey Nicholls
I think Julie, you know, when the immediate treatment is over, and we’ve had a few months of treatment finishing, side effects settling, and we’re looking six months, 12 months, even five years down the track; when we’ve had teeth extracted, or we’ve had some damage to our jaw, our saliva. And often these patients unfortunately, can’t return to work. And they’re still left with not enough teeth to be able to chew their meals, even if they can cope with that.
There’s the access to public dentistry, or Medicare supported-benefits, to acquire dentures plates. Sometimes that’s just out of reach for some patients. So even long term down, the track, they don’t have a full set of teeth to be able to cope with eating anything other than their soft foods.
Julie McCrossin
So that goes to both capacity to have good nutrition, but it must also go very much to how you feel about yourself and going out in public, getting to know friends and family closely again? Eating in front of people?
Tracey Nicholls
Absolutely, I think, you know, and I still have patients now who don’t have either dentures or their plates or still have ongoing dental issues. And you know, just access to care, because it is expensive. It’s not covered. Is kind of out of reach for some of those patients.
Julie McCrossin
Could you talk to me about particular issues, orally or dentally, for surgical patients? As you know, I was a radiation and chemo patient and I’m pretty ignorant. And I may not ask the right questions. So what are the issues that distress, or challenging for surgical patients? And where can they get help?
Tracey Nicholls
Surgical patients, depending on the type of surgery, depending on where the cancer is. And if you’ve had a cancer that’s taken out part of your jaw and you’ve actually got your fibula now sitting in your jaw, then obviously, down the track, if it’s supported by the institution that you’re being a part of, if you’re able to get implants, then life becomes, you know, a little bit easier.
But there are patients that don’t have access to that type of specialist dentistry or be able to fund that. So I guess the surgical patient, and having that type of major surgery, will probably end up having radiation as well. So then we’ve got the ongoing effects of radiation. So yeah, surgery patients, it depends on the type of surgery they’re having, and then exactly what we’ve done to their jaw or their oral cavity.
Julie McCrossin
It’s obviously very, very hard to generalize. But I think the key message I’m hearing from you is the people who can’t access public dentistry and who aren’t affluent enough to have the private insurance, to be totally in the private sector, there are real challenges there in getting the care they need to assist them to look good and eat. Is that the guts of it?
Tracey Nicholls
Yeah, I think that’s in a nutshell. On-going issues with nutrition. And not only that too Julie, you know, I guess we’ve all experienced it at the moment, because of the pandemic, that we’re all been trying to cope with, is that social interaction.
And I’ve got some of my patients that no longer go out to eat. They won’t, some won’t even eat in front of their family. So there’s, you know, it’s the social issues. It’s the nutritional issues. And also financial issues of trying to retain or gain your teeth and the ability to eat as normally as possible.
Julie McCrossin
I’d like to say that one of the videos we’re doing in this series of videos is on managing distress. And we speak to both patients, clinical psychologist, a specialist nurse, a psycho-oncology social worker and a researcher about aspects of managing distress and dealing with some of the issues that that you’re talking about. And, and I know that for some patients, not all, peer support is very important.
The chance to just meet and talk to other people who are grappling with similar issues. In your experience, what does help people to manage living long term with some of the oral and dental challenges that just aren’t fixed that they’ve got to learn to live with them? What helps people?
Tracey Nicholls
That’s a really good point. And I think one thing, one of the things I bring in my practice is with my patients, and often if I have someone, that’s just have been diagnosed with a very similar type of cancer, not coping. I have a group of patients that volunteer to come and see those patients, whilst they’re either in hospital, or to meet them socially, or to do a phone call.
Especially with my laryngectomy patients, and I found this is just an amazing resource. And I find, and I’m sure you would have too, that, when you were diagnosed, some people don’t want that social interaction with someone else.
But I find that there’s others that are very susceptible to talking to someone that’s been in the same boat. And I think to seeing them survive and be on the other side and back to living a reasonably normal life. And I think that just speaks in, you know, unmeasurable amounts.
Julie McCrossin
And just in a nutshell, for people who don’t know what a laryngectomy is, what is that? And why is it so important for a patient who’s going to have laryngectomy surgery to meet someone else who’s had it first of all?
Tracey Nicholls
We could do a whole video on laryngectomy, but laryngectomy is someone that’s had a cancer in their vocal cords and have had their voice box removed. So we then bring the trachea, so the breathing tube, out to the skin and it sits on the neck. So these patients become neck breathers. They no longer breathe through their nose and mouth. So our nose and mouth obviously warm and filter air, down into our lungs. Whereas they don’t have the capacity to do that, when the storm is sitting on the skin.
So we need all sorts of different things that help us breathe. Breathe warm, moist air. And also the ability to talk again. So that has very much an impact on how these patients return to a-sort-of normal, when the ability to speak and breathe is changed.
Julie McCrossin
Just before I ask you the last question, I’m very mindful, there may be someone watching this who has just been diagnosed. And, you know, it can be very daunting to hear about what can happen to some of your fellow patients and you think, Oh my God, is this going to happen to me?
It’s my experience, as a patient has been around for a while now and made a lot of other patients, that people can have these very serious treatments and they do recover. Many of them do go on to work. They learn to speak through a hole in their neck. They learn to carry their liquid food and travel overseas, even if they can’t eat normal food. That the human spirit is a resilient thing. Is that your experience, not for everybody, but for many?
Tracey Nicholls
Absolutely. It astounds me, and it makes me very proud to be a part of the journey. Yes, it does. It’s a toxic treatment. It’s tough getting through it. It’s that tough gig getting through it. Three to four months of your life that you will never get back again. But I think the day the day comes when life does get a little bit better, and I think every day gets a little bit better. And you do find that new normal.
Julie McCrossin
I know you feel very deeply about these things. Just finally, if there were one or two things that could be improved for head and neck cancer patients in your lifetime, what would you love to see? One or two things for the patients you’ve worked with all these years, that could just make it so much better for us?
Tracey Nicholls
A head neck cancer coordinator. I think I’m very fortunate in the unit that I work. I’m a able to meet my patient right from the beginning. I sit on that initial consult with the consultant. I’m able to either speak to the patient that day, or rearrange another appointment. And we sit down and we go through things very slowly. Because I think that first initial consult, all you hear is “cancer”. I really do believe that you don’t hear anything else other than cancer.
So we’re able to take the time to digest what’s being said. What the treatment plan will be. And then all of my patients have my number, my email address, and they can get in touch with me anytime of the day. I may not answer an email at two o’clock in the morning, but I will get back to them the next day. They’re able to come and see me or to call me whenever they need.
And I find in the beginning that’s really constant. There’s a lot of time and a lot of that need to have that conversation. To see me. To get clarity on what their treatment is going to be.
And as the treatment starts and as the treatment finishes that contact, that relationship, weens a little. I’m always there if they need me. But it does. It almost like you kids growing up and leaving home. But I think the other thing that is really good and it happens constantly, it happened yesterday.
One of my patients, four years down the track, feels another lump in their neck and they know they can ring me and I can get them in to see the consultant within about 24 or 48 hours.
Julie McCrossin
Fantastic. Tracey Nicholls, so good to talk to and I want to say on behalf of all the head & neck cancer patients and families, thank you so much for your work and for your advocacy. You know, you’re making such a huge difference to our head and neck cancer community and we really appreciate it. And thank you for being part of this video.
And I’ll just say to our audience, we’ve been speaking to Tracey Nicholls, deeply involved in the head and neck cancer community. And if you’ve got any questions relating to anything you’ve heard, remember if you’re in Australia, Cancer Council 13 11 20.
There are clinicians on the end of those phones. They can refer you to people. They can provide you with information on the website, or they can mail you out booklets. They have information on the dental and oral health side. And the other great source of evidence -based information is the BeyondFive website. That’s www.beyondfive.org.au. And I can tell you wherever you’re watching this online, this will all be made available to you. My name is Julie McCrossin. And thank you so much for taking in interest in dental care for the head and neck cancer patient. Thank you.
Transcript ends