Joseph Califano, MD, Physician in Chief at Moores Cancer Center and Director of the Head and Neck Cancer Center and Liza Blumenfeld, MA CCC-SLP, BCS, Speech Language Pathologist and Co-Director, Moores Cancer Center at UC San Diego Health Head and Neck Cancer Center, talk about cancer survivor, Cynthia Zamora’s tongue reconstruction surgery and her speech and swallowing rehabilitation.
Joseph Califano, MD
Tell me briefly about Cynthia’s case. Why did she come see you?
Dr. Califano: When she came and saw me, she had a large tongue cancer – one that really occupied more than half of her tongue. And she had it grow rapidly over a period of a few months. By the time I saw her, she really was having a hard time speaking and swallowing.
When you saw her, what did you decide is the right treatment for her?
Dr. Califano: For people who have primary cancers that start in the mouth – really, surgery is the appropriate therapy if you can do it. We know that patients who get surgery upfront for these cancers do better in terms of survival. So that really was the right choice for her to undergo surgery. And, obviously, because she had such a large tumor, we knew she was going to also get radiation therapy and likely chemotherapy afterwards.
You had to remove a good portion of her tongue. Tell me about how much you had to remove and about saving as much as you could?
Dr. Califano: It’s a very difficult decision and a difficult conversation with patients who have large mouth cancers. The mouth is very important for us to be able to do all the things we do normally in life, which is to talk, to eat and to breathe. And particularly for mouth cancers, the most difficult thing is really talking and eating because that has to do with very social things that we do. One of the most social things we do is to talk with other people so we can communicate. And whenever we have a social event, when we go out with family or friends, it usually revolves around eating. So those are very important things for people’s quality of life and just how you feel about yourself and how you interact with friends and family. So, with Cynthia we discussed what’s the best way to do this surgery, how much tongue we would be able to save, and how much function she would be able to have after the surgery. One of the most important things we talk about is we don’t sacrifice the surgery to cure the cancer because we’re worried about function. Because when we do that, the cancer comes back, and then we’ve defeated our original purpose. So, the primary thing is to go ahead and cure the cancer and take out the cancer as best we can with an appropriate amount of normal tissue, so we make sure we get all the cancer. So for Cynthia, that was a very difficult conversation because it was unclear, really, when I was talking to her in the office exactly how much tongue we’d be able to save and how good her function would be with the remaining tongue that we’d be able to preserve.
How much tongue were you able to preserve?
Dr. Califano: We were able to save less than half of her oral tongue, which isn’t a lot, in fact. So, it was a challenging surgery where we cut just right to save enough tongue tissue to have some function but make sure we got well around the tumor. And we were able to do that, and the amount of tongue taken was so large that we had to take additional tissue from her leg so that we could go ahead and move that in to create a new tongue for her. And so after her tongue was removed, one of my colleagues went ahead and did that reconstruction so we could go ahead and optimize her function afterwards and give her as much of a tongue as we could so she could go ahead and be able to eat and talk.
Do you often find yourself having to reconstruct the tongue or other areas when you do surgeries for head and neck cancer?
Dr. Califano: We always do some type of reconstruction when we do surgery for head and neck cancer. It’s an area where a lot of things go on – swallowing, breathing, talking – all those kinds of things. And it also has a lot to do with cosmetic appearance, which is very, very important for quality of life. So, every time we do a surgery, we’re really focused on how we can best get that person back to wellness – get that person back to functioning as normally as possible and get back to their usual life.
With Cynthia, was it just the tongue or was there anything else that you had to do?
Dr. Califano: We removed the lymph nodes on that side of the neck as well and we did some other things to help support her in the post-operative period immediately afterwards, including putting in a breathing tube that was temporary and the feeding tube that ended up being temporary as well.
How is Cynthia doing now?
Dr. Califano: She is just fantastic. She’s back with her family. She’s eating. She talks beautifully. She’s done spectacularly well and it’s incredibly gratifying to see how well she’s done. She’s done a lot of hard work so, you know, we can do what we can as surgeons and other therapists to help people get back to being better, but she’s done a lot of work as well. So, she’s been a very active participant in her recovery and has really done a fantastic job of that.
Cynthia said that at one point she used to socially smoke and drink wine, and she was like, maybe that’s what it had to do with.
Dr. Califano: We’re not 100% sure. You know, there are people who get tongue cancers who don’t have our typical exposures of drinking alcohol and smoking. And certainly, her exposures were not that impressive. So, we do see people who just get tongue cancers for either unknown hereditary reasons or it just happens because of chance or luck. I try not to get people so focused on why they got something, but just get them focused on the future and getting better and treating their cancer.
What would you say to somebody who is just diagnosed with something like that and is going to have a pretty radical surgery? In terms of giving them some sort of hope.
Dr. Califano: We have people who do very well after very large surgeries – who function beautifully and, you know, keep their relationships with their family and friends and are able to eat and talk and really get back to their lives. So, it’s very, very difficult to predict, you know, what the outcomes are going to be, and some people do spectacularly well, and Cynthia is an example of somebody like that. So, I like to tell them to have hope. Be optimistic. Because with some hard work and some luck and good treatment, good surgery, good other treatment people can do very, very well.
Lastly, what are some of the risks of head and neck cancer and what can we do to prevent them?
Dr. Califano: Here in the United States the big risk factor is still smoking. And in addition, with that, alcohol is also a risk factor for head and neck cancer. And then the third one is HPV-related, or a pharynx cancer is quite prevalent and is actually growing in incidence in the United States, and that’s related to exposure to the HPV virus early on in life. In most people, in their teens and early 20s. And that virus infection – if it’s been there, there’s not much you can do about it. It’s happened and, you know, we try to figure out ways to screen for this disease, but that’s one of the diseases as well. For that disease, what I always tell people is make sure they get their kids vaccinated with the HPV vaccine, because that’s probably their best chance at preventing later cancers.
Liza Blumenfeld, MA CCC-SLP, BCS, Speech Language Pathologist and Co-Director, Moores Cancer Center at UC San Diego Health Head and Neck Cancer Center.
Tell me about Cynthia Zamora’s case. What kind of care did she get here at Moores Cancer Center?
Blumenfeld: Cynthia required what we refer to as the trifecta of treatment. She came to us with stage four -very advanced-stage – aggressive disease that included the majority of her tongue. In order to treat her, we had to provide her with upfront surgical resection. This required a large surgery to remove the cancer from her tongue. The surgeon reconstructed that space with some tissue from her thigh, creating the appearance of a new tongue. She was then sent home after a prolonged stay in the hospital to recover from this large and transformative surgery. About 6 weeks later, we had to begin 7 weeks of both chemotherapy and radiation to help address any residual cancer that might be within her system. During that period of time, Cynthia was provided with a host of multidisciplinary services including a speech pathologist to work on talking and swallowing, a dietitian to work on helping her gain weight and stabilize her nutrition and psychosocial services as well.
You talked about the importance of pre-treatment.
Blumenfeld: Pre-treatment in head and neck cancer is critical because as a speech language pathologist, it’s no different than an architect who develops a blueprint for the dwelling that they hope to create. Seeing our patients before treatment tells us how the cancer impacting their baseline speech and swallowing function and can predict the likely effects from surgery, chemotherapy and radiation. This information allows us to coordinate our efforts in a way that maximizes their function and quality of life. So, we are responsible for making sure that they can eat in a safe way without choking. We can keep them eating. We can keep them talking. And it, again, gives us sort of a framework from which to build. So, in short, it allows us to predict, to appreciate today and then appreciate the changes that are likely to occur in treatment. That gives us the best shot at sort of customizing what we do in a way that will allow them to thrive during and after treatment.
Tell me about Cynthia as a patient. Tell me a little bit about her?
Blumenfeld: You know, doing this for 23 years, there’s people that come into your life as patients, and your mind is blown by their strength of character, their humor, their wisdom and their willingness to fight. Cynthia really embodies all those things. From the first day, she was insistent that she was going to come out of this as a stronger, better person. To be brutally honest, knowing what she was facing, I was skeptical. But she proved to me that the strength of character and the willingness to fight through circumstances that most of us could never fathom and/or endure makes her really one in a million. It’s just been a privilege to follow her along this journey. It provides me with an enormous sense of pride that our team can help our patients exceed our expectations. I often use Cynthia as an example – to inspire other people and help them realize there’s a life after cancer. There’s function after cancer. There’s food after cancer. And she has really shown me even in my own personal life to never give up and to set your mind on a target that you do not deviate from.
What does the tongue really do? What happens when you lose it? And what were some of the challenges she faced in the recovery process?
Blumenfeld: I would encourage everybody to think for a moment of what life would be like if you were in Cynthia’s shoes. Grab your tongue with your teeth and try to talk without a tongue. When you take a bite of a sandwich, think of everything that’s going on in your mouth. It’s one of those parts of our body that is extraordinarily complex, and yet we completely take it for granted. Without a tongue, patients can exhibit a whole host of difficulties relating to speaking, swallowing, and breathing. The tongue is critical. It’s one of the strongest muscles we have in our body. In speech, our tongue makes small rapid movements within the confines of our mouth that generate specific sounds in conversation. It’s hard to grasp how complex that action is. Without a tongue, you have to compensate for all that movement with other structures – your lips, your cheeks, your jaw. It can be a tedious act. And yet, Cynthia does it with ease. With swallowing, your tongue, again, is critical. For us to be able to chew and swallow, we must manipulate food, move it from one side of our mouth to the other side of the mouth. We must be able to organize all that food on top of our tongue, and we need to be able to propel that food backwards for us to swallow it. Without a tongue, that becomes almost an impossible task. So, what Cynthia is required to do is substitute a chopstick or a knife or some object that she inconspicuously places in her mouth in order to move the food over for her to swallow it. The tongue is so critical. It is involved in a lot of very important tasks that our critical to our daily functioning and quality of life.
How do you teach people to relearn to speak, to talk, to swallow?
Blumenfeld: Teaching somebody to regain their speaking ability and swallowing ability during head and neck cancer treatment is difficult. It requires a pledge between clinician and patient. It goes back to that pre-treatment – so being able to understand what their abilities were like before and being able to understand what their new normal looks like. We play on their strengths. We play on their ability to compensate with other structures. And we also must tap into that deep place within them that is patient and that is motivated because it is extremely complicated. So, what we do is target the sounds that are problematic. We change the way patients talk. We have them slow down. We have them exaggerate each sound. We have them compensate with their vocal cords for sounds that they can no longer make with their tongue. It’s a very tedious process, and as I mentioned, it requires strict devotion and a lot of work, especially from the patient. They must do a lot of work at home. We have them read out loud. We have them read to their children or grandchildren and practice. We take voice samples so they can hear themselves. With regards to swallowing, we do a lot of work with patients. We start with things that are easier to swallow, like liquids. We have them compensate by sometimes modifying, changing how they eat. Sometimes they have to throw their head back in order to get the liquid to the back part of their mouth. We sometimes have them use equipment to help them move the food in their mouth. And then we see how far we can go. Cynthia’s a great example of someone that has exceeded all our expectations in what she’s able to do in her talking and her eating.
How much time were you spending with her?
Blumenfeld: Our care pathway model, which is a model that was developed here at the Moores Cancer Center, dictates how often we see patients. In Cynthia’s case, we saw her before treatment and then every two weeks throughout her treatment course. So, I would schedule sessions with her for about an hour. And on a few occasions, she was, frankly, just too sick to come and see me. She suffered horribly and in some situations was just too weak and too sick to come and work with me. Once the acute stage, or once the actual treatment was over, she was able to come and see me more frequently, so I got to see her more on a weekly basis so that we could really work on the rehabilitation.
She mentioned she was once a pretty good singer, but now her voice is kind of raspy. Why has her voice changed?
Blumenfeld: We can appreciate the vocal cords through endoscopy, and Cynthia’s vocal cords look very healthy. They move really well, and they should be capable of producing a good and clear voice. It’s more the speech component that is disrupted during singing. So, patients just can’t rapidly generate different sounds that are parts of songs. So, it can sound a little slurred, or it can sound a little mushy because her tongue just simply can’t do what a singer wants to do. But, it’s really all about being patient, accepting a different beautiful singing voice. It’s just about modifying the technique a little bit, picking the right song and practice.
So, the raspiness has to do with the way she’s moving her tongue around?
Blumenfeld: It’s more the distortion of her not being able to create certain sounds simply because her tongue will not allow her to do that. But there’s a difference between speech and voice. Voice is generated at the vocal cords, which were spared and are very well intact in Cynthia’s case. It’s the speech component that is disrupted. And she compensates beautifully in her speaking voice. And I think with a little bit of practice, and knowing Cynthia the way I do, she will be singing proudly, loudly sometime soon.
What would you tell a person who faces a radical surgery like Cynthia did?
Blumenfeld: I get to deal with many patients every week that are facing a very large, scary, life-changing reconstruction. And I’m always humbled by that, and I’m always thinking in the back of my mind the terror and the fear that they have. But knowing Cynthia and having her sort of enter my life, I always sort of have her at the back my mind. And I have her permission to use her. She’s enthusiastic about sharing her story and video. And I routinely do that. I show patients. I say, this is what’s possible. You can talk. You can eat. She’s eating Lay’s potato chips. You can do that. Don’t lose sight of that fact, though, it’s a rough road. But let this be a beacon of hope that there is some light at the end of this tunnel. It’s a long tunnel, but there is light. And so, I think knowing her has really sort of reshaped my hope – my hope in terms of what we can do as a team, but my hope for each individual patient that they can realize a similar outcome.
Interview conducted by Ivanhoe Broadcast News.
END OF INTERVIEW
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