Getting her kids out the door, in the car and to school is a daily mission for mom Lisa Bourdon-Krause, but it's also one she doesn't take for granted. That's because a few years ago, Lisa was diagnosed with tongue cancer.
"They said surgery would be the best option," said Lisa.
But doctors also said surgery would mean removing half of Lisa's tongue. One of her doctors told her she might not ever talk again. At the time, Lisa's son was just two. She didn't know if he'd hear his mom's voice again, so she recorded herself.
"I started to try to think of everything I would ever want to say to him," said Lisa Bourdon-Krause.
Thanks to this surgeon, Lisa never had to give her son those recordings.
"It's just everything that you do, and it's just so much of your identity," said Douglas B. Chepeha, M.D., M.S.P.H., Department of Otolaryngology at the University of Michigan Medical School.
In a 10-hour surgery, surgeons cut out the cancerous part of Lisa's tongue. Then, Doctor Douglas Chepeha took skin from her own forearm and attached it to her tongue -- using this pattern as a guide. The result: a tongue that looked and felt much like the real thing.
"What I'm really doing is I'm putting in tissue from another part of their body to help the tissue that they have left work."
Lisa was able to talk a few days after her surgery. After a couple of weeks, she could eat. It was a relief -- but not the biggest one for Lisa.
"None of it scared me though, because all I cared about was living. All I cared about was being alive."
A mom who's grateful for every moment -- and every word she can speak.
For more information on other series produced by Ivanhoe Broadcast News contact John Cherry at (407) 691-1500, email@example.com.
MEDICAL BREAKTHROUGHS RESEARCH SUMMARY:
BACKGROUND: According to the Mayo Clinic, tongue cancer is a serious type of head and neck cancer. It usually appears as squamous cells (a lump, white spot or ulcer) on the outer layer of the tongue. When it's caught early, tongue cancer is highly curable. When the cancer forms in the front two-thirds of the tongue, it is classified as "oral tongue cancer." When it develops in the remaining third of the tongue it is classified as "tongue base cancer" and is considered a form of throat cancer.
People with a history of smoking and alcohol dependence have a greater risk for developing this type of cancer. More than 10,000 Americans are diagnosed with tongue cancer each year.
TREATMENT: Treatment for tongue cancer typically depends on the type and stage of the cancer. Oral tongue cancer is usually treated with surgery and is often followed by radiation therapy. Tongue base cancer is often treated with a combination of chemotherapy and radiation therapy and is sometimes followed by surgery.
EFFECTS OF SURGERY: Sometimes, surgeons have to remove a large portion of the tongue when they cut out the cancer. This can affect a person's speech and ability to eat and swallow. Some patients that can speak after surgery are not comfortable doing so in public. "Patients were really limiting their social activities," Douglas Chepeha, M.D., M.S.P.H., from the University of Michigan Medical School, told Ivanhoe. "They would often say they did things that they really couldn't do."
REBUILDING TONGUES: Dr. Chepeha and his team have developed several techniques for reconstructing tongues. They use innovative patterns, which are much like dress patterns, to help them determine the size and shape of the skin tissue they'll cut for transplanting. The tissue is taken from another part of the patient's body (often the forearm), so there isn't a risk of rejection. The procedure typically involves removing a portion of the tongue and reconstructing a new tongue. It requires surgeons to dissect and reattach blood vessels. The vessels are sewn together with tiny sutures. The result is a tongue that is not a muscular organ but looks and feels much like the real thing. "In the past, patients who have undergone tongue reconstruction would be very concerned about social interaction," Dr. Chepeha was quoted as saying in a University of Michigan press release. "With the type of reconstruction we're performing now, our patients tell us that they're willing to go into a restaurant and order a meal. They have no hesitation whatsoever in asking strangers for directions. They are also able to maintain their employment status and their interactions with family and friends."
FOR MORE INFORMATION, PLEASE CONTACT:
University of Michigan Cancer AnswerLine
Ann Arbor, MI
THE FOLLOWING IS AN IN-DEPTH INTERVIEW WITH THE DOCTOR
Douglas B. Chepeha, MD, MSPH, from the department of Otolaryngology Head and Neck Surgery at the University of Michigan Medical School in Ann Arbor, MI, discusses tongue reconstruction and how he goes about giving cancer victims their quality of life back.
Can you discuss tongue reconstruction and how you know whether patients are or are not optimal candidates for this surgery?
Dr. Douglas Chepeha: In deciding how to perform tongue reconstruction, you have to try and balance a variety of factors when trying to figure out the best thing to do for patients. In the past, what surgeons knew was that if you took out a large portion of the tongue, patients could still talk all right. If you didn’t ask a lot of questions, and you didn’t pin the patient down and ask" ‘what are you eating?’ ‘will you ask people questions in public?’ ‘will you go up to a stranger and ask for directions?’ – if you didn’t really pin them down and ask, you would find out that they were actually communicating quite fine with their friends and families, however, they were really limiting their social activities. This is the same for eating. They would ask them about this and patients would respond ‘oh yeah, I can eat anything I want.’ That was the traditional patient answer. But in fact, when you really pinned them down and start to say ‘well, what do you eat,’ and in what situation, ‘do you eat in public’ – ‘if you were at a wedding, would you eat at a wedding,’ ‘would you walk down the serving isle, pick up whatever you want to and eat it in front of everyone?’ When you ask these questions, you really start to find out people didn’t really do that. I think that it is because they want to please the doctor. They would say that they did things that they really couldn’t do, but when you pinned them down you would find out that they weren’t able to do what you would want in your own life. So there are a lot of ideas (and there still are a lot of them) that you can cut out a large portion of a person’s tongue and they still are able to do just fine. The classic answer by many surgeons is ‘yeah . . . I talk to my patients all of the time. They are doing just fine.’ I suggest that you ask them very carefully and you will find out that in fact they are not doing just fine.
When you got into this about 15 years ago, where you doing any type of reconstruction?
Dr. Douglas Chepeha: Yes. I finished my residency about eighteen years ago, and I was fortunate enough to go to a residency where there was a lot of this tissue transplantation. When we were doing this in the late eighties / early nineties, we were very worried that you couldn’t fold it and had to lay it in flat; you couldn’t do anything to stress the tissue that you just implanted. Once I got to my fellowship (I had some phenomenal teachers there), we started trying to fold the tissue, and I began folding different patterns, and I had great teachers that sort of challenged me all the while encouraging me to think about it. By the time I hit Michigan, I was already on way to cutting these templates and dress patterns for building different parts of people’s heads and necks. So I have been doing it for quite a while, and I have been doing it far before anybody thought that it was a great idea.
How did you come up with these dress patterns?
Dr. Douglas Chepeha: When I was training as a resident in the 90s, we tried to just keep them flat and not fold them too much. What I would notice when the patients would come back into the clinic – if you hadn’t carefully reattached the muscles and you just gently placed this tissue transplant in flat, than the patient’s tongues would be listing on their sides. We actually called it the ‘listing tongue’. It was like a listing ship. It would be simply lying on the side of the mouth. Because we have so much central wiring of our tongue from our brain, we can make up quite a bit of deficit from the mouth (oral cavity), but it looked so unsatisfactory that I thought we have to do more than merely cutting a 6 x 8 centimeter disk and throwing it in the mouth. That is when I started taking models and cutting different things, and trying to see how different shapes would fit in different parts of the body.
Why take it from a person’s forearm?
Dr. Douglas Chepeha: Ultimately, it’s ideal. I don’t always take it from a patient’s forearm. It depends on the patient’s body habits. If you take 100 people, for 60 of them the arm is the best place. The reason is because the tongue is thick. If we cut out tongue cancer – most tongue cancer appears around the side of the mouth – so that part of the tongue is really muscular and big. Then it comes down like a little mushroom stock in the front in a way; then you have what we call the floor of the mouth. That’s the thin tissue right behind your front teeth. Doctors call that the floor of the mouth. The floor of the mouth has really thin tissue. The reason that it is so thin, and there are lots of reasons, but one of the reasons is that it lets you stick your tongue out. It’s big, heavy, thick tissue; let’s say the sole of your foot – your tongue could stick out in the same way. So I had to look for a part of the body that had really good blood supply that had a thick part right next to a thin part. In fact, there are many places in the body that have that but the forearm by far is the best place.
Does there have to be a specific volume (thickness and thinness) to the tongue in order to get optimal results for the patient?
Dr. Douglas Chepeha: If you are off either way, it is going to be too thick for the tongue to work or too thick for the floor of the mouth. If it is too thin – that is the big part in the nineties before they reconstructed patients a big deal – you don’t restore the volume of the tongue enough, and when that happens if you get a piece of food stuck on the side of your mouth you can’t move it back. If you think about chewing with your teeth or trying to move food around, there is an area that you cannot fully squeeze all of the food or liquid out and it will just sit there. So you need to have enough volume – you have to get enough volume on the tongue so that it is big enough but then it has to be thin enough so that the patient can protrude their tongue.
Where else could you take this tissue from on the human body?
Dr. Douglas Chepeha: The most extreme example would be when I had to treat a marathon runner. He got cancer on the side of his tongue, and this guy had no body fat; I mean none! Most males, regardless of how skinny they are, will have a little bit of body fat around their belly button, so I did a transplant from right around that region. I marked out a thicker area around there, of course his skin was exceptionally thin beside that, so that thin part became the floor of his mouth, and the thick part was that fatty part around the tissue of the belly button. I take pretty routinely from the arm – either that lower forearm site or the side of the arm. If you think about the side of the arm as you get closer to the elbow (the skin on the side of your elbow is always really thin, plus it is really good because it is made to bend and stretch so it is ideal for the mouth). Additionally, there is always some fat on the side of their arm, so that is a place that I will take from quite frequently. The problem with that site is that it is technically more difficult; the vessels that we have to sow up are a lot shorter and smaller, so I can’t do surgery on people who have had myriad surgeries in the part because I can’t then hook it up to the transplant.
What are some of the risks involved with this procedure?
Dr. Douglas Chepeha: Well, there are good and bad risks. I’d love to be able to take other people’s tongues and power them up to do real organ transplants. That would be very exciting work. Some of that has actually already been done. They did a tongue transplant in Austria, but a problem that has always been encountered each time. My patients are essentially cancer patients. If you transplant cancer patients with other people’s organs and you have to put them on immune suppression, the cancer almost always comes back. I would love to transplant organs. I would love to figure out how to make that work, but I can’t because of the immune suppression issues. Another problem with transplanting whole organs is that the nerve structure is very complicated. We are very good at hooking up nerves, but we are not good at hooking up that individual part of the muscle. So whenever we hook up a nerve, although we are very good at it, we get a thing called synkinesis, which means the whole muscle moves and you don’t get those fine motor movements. The good thing about what I do is that when you transplant from your own body, you don’t need any immune suppression because essentially it is you.
Do you need any drugs at all?
Dr. Douglas Chepeha: No. We use Aspirin to keep platelets from aggregating. What we do is sew the blood vessels together with little sutures (smaller than a human hair) and we just put the ends of the blood vessels together and suture them up by hand. But where that suture line is inside that vessel – just like somebody could get a heart attack; that is what a heart attack is: little globs of platelets on a rough area in your vessel or I sowed it together and it is a rough area. So I get a little glob platelets, and so if you give Aspirin it will help with inhibiting those platelets.
How long do you have to give the patient Aspirin?
Dr. Douglas Chepeha: About a month or so.
Essentially, this sounds better than a transplant because the patient is going to be drug free.
Dr. Douglas Chepeha: Yes. You are going to be medicine free. Another thing that is important (this is a complicated thing to understand), but nonetheless an important wrinkle to understand, is that I really augment residual functional tissue. So as a cancer surgeon, when I go in there and I cut some part of a person’s body out, whether it be half of their tongue or part of their throat, what I am really doing is putting tissue in from another part of their body to help the tissue that they have left work. What I put in is rarely working tissue. It is kind of a cool balance of restoring what was taken out in such a way that the tissue that remains could function very well.
How have you progressed this transplant in the past couple of years?
Dr. Douglas Chepeha: This is always a work in progress. The one that I showed you earlier where we took the rectangle and we sewed it into the tongue, I have problems with that. In fact, it is less than perfect. Right now we are going through a review to see what we can do about tongue protrusion – the ability to stick your tongue out of your mouth. Although it sounds like a funny thing that I kid would do, being able to stick your tongue out past your teeth is a big deal because it means that you can’t get food from out of there and it is an important function. We are doing a lot of work now measuring it and finding out what we can do to improve that. I think that some of it will come from surgery, but a lot of it will come from how we rehabilitate the patient (looking at some biofeedback as well as stuff like that).
Was Lisa your first reconstruction?
Dr. Douglas Chepeha: No. She was definitely early though. I can’t remember what year exactly I worked on her. I believe it was ’98 or 99’. It was definitely at least ten years ago. I was definitely into it quite a bit at that time. I had tried several different designs, none of which I was very happy with. I had probably been doing that specific design for about two years then.
Do your patients amaze you?
Dr. Douglas Chepeha: Yes. When I first started my career, I did a lot of quality of life research and really thought that there would be a lot of value in this research. What quality of life research really taught me was so much. When you treat a patient, it is not really about what we do to them, it is their attitude when they first walk into your office and sit in that chair. I kind of stopped doing quality of life research because I found that the individual makes far more difference than all of the stuff that we do in the operating room. Moreover, Lisa is an exceptional individual.
Can you tell right away how someone is going to interact to what you do?
Dr. Douglas Chepeha: No. It is so stressful. I know that in the media there is a lot of talk regarding breast cancer and colon cancer, but when you walk in and says ‘we are going to remove part of your face,’ or ‘we are going to remove part of your tongue,’ the impact – if you can imagine somebody just told you that; it’s your job, it’s your life, it’s the relationship that you have with your spouse, it is the communication that you have with your family. It is just everything that you do. It basically is your identity. A lot of people at first I cannot tell with, and I have to admit that with some people we are utterly surprised at how tough they are because they seem so scared at first when we start getting into it, we go through the surgery and begin to see how mentally tough they are. I’m sure that many doctors would tell you that they know, however, I myself am still not sure.
Have you seen an increase in cancer because of some of the issues that arise with HPV?
Dr. Douglas Chepeha: Yes. In my practice, I have definitely seen an increase in cancer due to HPV, but it is mostly cancer in the back part of your throat. If you think about when you were a kid and your tonsils in the back part of your throat, it is really where the tonsils in the back part of your throat are. It is sort of that rough part on the sides of your throat. It’s way back. It’s the part that if you put your finger back there you will ultimately gag. In the front of the mouth, I don’t think that there is going to be as many patients with HPV related infections. We have done some research here, and are about to publish a paper on it, and it just doesn’t seem that the prevalence (the number of patients; the number of people that have an HPV related cancer in their tongue) is probably going to be very, very small. Whereas in the throat (in the back of the throat) it is starting to cross 90 percent. That means that 90 percent of the cancer patients have the evidence of an HPV infection in their throat at some point in their life.
Is that a huge difference from when you started?
Dr. Douglas Chepeha: We have a cohort of patients from about 1999 to 2005, and the prevalence of HPV in that group is approximately 60 percent. The most recent group from about three years of research shows that it is crossing 90 percent now.
In conclusion, what’s next?
Dr. Douglas Chepeha: We are always going to be looking for a better pattern. I think what is next for us is having more active work with the patient in the rehabilitative phase. We already do a lot. We give the patient a lot of tongue exercises and things like that, but what I think we need to do is give patients more clear targets. Basically, that means a biofeedback approach where we might put a raise that allows us to see if they can touch particular sensors in their mouth via their tongue; it would light up on a computer screen and virtually show where they need to touch. You can try and tell someone how to form a certain consonant; in English you have to have quite a few consonants that involve touching the roof of your mouth – particularly the front of your mouth. It is hard to explain this to people often times. You can say ‘do you see that red light; I want you to light up that sensor on the roof of your mouth using your tongue.’ You can actually do very well implementing this computerized diagram through biofeedback. That is what we are doing and furthermore where we are going with this. We are using a lot more biofeedback in order to get better rehabilitation for the patients much earlier on.