Tongue cancer is uncommon, and it's especially unusual for it to strike a young person who doesn't smoke or drink heavily. Kate Brown was just 32 years old, recently married and beginning a new job, when she learned that a spot on her tongue was stage 3 tongue cancer. Brown was referred to UCSF Health, where surgeons recommended a drastic treatment that was her best shot at survival: a total glossectomy, or tongue removal, followed by chemotherapy and radiation.
Life After Tongue Cancer and Total Glossectomy
Four years later, Brown is cancer-free and, unlike many patients who undergo total glossectomy, able to eat and speak understandably.
How did you discover you had tongue cancer?
A small sore appeared on my tongue when I had a sore throat. I took antibiotics for the sore throat, but the spot was still there after the sore throat subsided. I then started to have ear pain and the sore got larger. I was prescribed antibiotics again. When my doctor looked in my ear she didn't see any swelling, but the earache became unbearably painful. I'd never been in pain like that.
In my heart of hearts, I knew at that point that something was terribly wrong, but I wasn't sure what it was. I decided to see another doctor, who referred me to an ear, nose and throat specialist. I think he knew right away that what he saw might be cancerous, because he insisted upon a biopsy right away.
Was it hard to decide to go ahead with a glossectomy?
My doctors felt that my cancer was extremely aggressive and advanced, and that the surgery, followed by radiation and chemotherapy, would give me the best chance of survival and recovery. It's a personal decision but I wanted the best chance of survival possible.
Many people think it's going to be the end of their lives if they get the surgery and choose to try chemo and radiation first to save their tongues – even though this isn't recommended and most often doesn't work. If you wind up needing the surgery anyway, there can be a lot of complications with surgery after radiation – your skin and blood vessels don't heal as well. Also, the cancer may essentially never leave your body and end up metastasizing.
It's something I feel strongly about. I've befriended patients who passed away because they went down that path.
Can you describe your surgery at UCSF?
I had three surgeons who worked as a team. They removed my whole tongue – due to the extent of the tumor they couldn't save any of it, unfortunately. They split open my jaw, through my chin all the way down through the right side of my neck. It was extremely invasive, but they had to make sure the cancer had not spread anywhere else.
They then took tissue from my left wrist and upper arm area and used it to re-create a tongue. It's more of a passageway than a tongue like I had before, but it has some feeling to it. I can taste fairly well because there are taste buds all over your mouth, not just on your tongue. A lot of taste is through smell and mine must be excellent, because I still taste and enjoy food.
Surgeons used to do a larger graft that resembles an actual tongue, but now they think that doesn't help the patient with eating and speaking. The tissue doesn't have any musculature and can't move, so it just hinders the process.
I do feel that the surgeons at UCSF saved my life, and that the way they rebuilt me allowed me to recover from such a drastic surgery as best I possibly could.
What was it like to come out of such an invasive surgery?
It was like I lost two days. I was just in a twilight zone.
When I woke up I was on a feeding tube, I had a tracheotomy and couldn't speak at all. I had drains in my face to reduce swelling, but even with the drains, your face is still swollen out to here. My first impression was, "Oh my God." You think you'll be like that forever, but you won't. If you see me today you can barely tell. I have scars but I am not disfigured at all.
I spent 13 days in the hospital. I actually told them I felt better than I really did, just so I could go home.
About three months after I got out of the hospital, we went on vacation to Mexico. It was so great to get out of my apartment and do something that felt good. I couldn't get in the water completely, but I would stand in the ocean up to my waist and just be like, "Aaaaaaaah."
I want to stress that I was very fortunate to have an incredible network of family and friends who supported me. I don't think I would have done as well without them, especially my husband, Brian. He was so sweet and caring and was there for me in my darkest hour.
How did you learn to eat and speak without a tongue?
It was a very slow process. I still feel like I evolve every few months, especially with my speech.
After the surgery, I tried to eat as many different types of foods as possible before I started radiation treatment. The radiation causes quite a bit of discomfort in your throat and it completely kills your appetite. I was glad I developed those muscles prior to radiation, because I really didn't eat for two or three months. All my nutrition came through a feeding tube.
I worked with speech therapists initially. The first thing they make you do is swallow water because it's the hardest – it's the thinnest liquid. Once you can swallow water without aspirating it, then you can move on to soft foods like applesauce and yogurt.
You kind of have to be hungry to want to master eating. I had lost so much weight that I needed the nutrition from the tube, but if I had too much, I didn't have the appetite to work on solids. It was a tough balance.
Learning how to eat again was the hardest thing I'd ever done. I was literally dripping sweat. It would take me about two hours to eat bites of teaspoon-sized food. It was so frustrating – I was hungry! I lost about 10 or 15 pounds during treatment.
I now eat every type of food, although I need to be careful to take small bites and because of the radiation, I can't handle spice. Radiation essentially burns the inside of the mouth, and the tissue is still sensitive. I love spicy food, but it burns so bad it's not worth it.
How about relearning to speak?
At first, I used a palatal drop prosthesis. It's something like a removable retainer, and the theory is it helps with the echo in the mouth. Many people find it helpful, but I found it really socially awkward. I couldn't eat with it in, I couldn't exercise with it in, and it was messing up my teeth. I was sick of taking it in and out. And I had to adjust to speaking both ways, with and without the prosthetic. Finally my husband said, "Why don't you just not use it?"
I stopped using it about two years ago. The best speech therapy for me has been getting out and interacting with the world.
And you're still making progress with your speech?
This year I'm really working on talking on the phone. Anything phone-related, I used to avoid because it was just so painful to go through. But I don't want to be dependent on other people to do it for me, so I've been forcing myself, and making the other person be patient. I feel I've made major improvements the last eight months.
I'm looking for a job and have been doing phone interviews. I tell the person that I have a bit of a speech impediment and if they can't understand, just ask me to repeat, it's not a big deal. It's definitely very telling, how people respond. People really reveal themselves when they come across someone with an impediment.
Chemotherapy can harm fertility, but you were able to save your eggs before you started?
I think that was kind of an afterthought for the doctors, because I was much younger than the typical patient. But when they brought it up I said, "Yes, I want to have a family!" Luckily we had the savings to pay for it. Between the surgery and starting chemo and radiation, I had my eggs harvested and frozen at the UCSF Fertility Preservation Program.
I know two other women who had tongue cancer who now can't have kids. One didn't have [fertility preservation before her chemo and radiation], the other knew about it but didn't have the funds. I wish more people knew about fertility preservation, and that the storage fees are discounted for people who have had cancer.
What's your prognosis now?
They feel that with the amount of time that's gone by, the cancer most likely won't come back. That would be very, very rare for this type of cancer. I stopped having biannual MRIs about a year ago, and now I just have checkups.
You volunteer with a patient education and advocacy website. What do you do for them?
Oralcancerfoundation.org (OCF) was a lifesaver for me when I was first diagnosed and went through treatment. I was so scared. Any kind of life-threatening illness is of course terrifying, but this specific type of cancer affects so many aspects of everyday life. We all take eating and speaking for granted until they're compromised.
I am a patient advocate for OCF. I answer questions in the forums, I meet and communicate with other patients who have gone through or are going through the same surgery and treatments I had. It's been wonderful to give back to an organization that helped me so much. The site is an invaluable resource for research, awareness and support for patients, families and caretakers.
How did OCF help you when you were a patient?
I was a basket case, especially at first. I didn't know what to expect. The doctors, they tell you on a need-to-know basis, for sure. So when I read through all these patient stories on the site, the gravity of the situation really set in. I thought, "How am I ever going to endure this? How will my life be afterwards?" It seemed just completely and totally unfathomable to me. I couldn't sleep because I was so terrified. But if you read about it enough and hear about it enough, you get desensitized. There are also blogs on the site, and I started one immediately after my diagnosis.
Now when I communicate with people in the same boat, I tell them, "Just so you know, my life now is great. Now, here's the deal."
It's been nice. I've helped a lot of people. I made a promise to myself [when I was sick] that if I get through this, I have to give back in some way. I feel this is my contribution.
What advice would you give to someone facing a frightening health issue?
Put one foot in front of the other. Don't think too much about the end result. Just try to deal with how you're feeling that day, emotionally and physically.
During the process, I thought, "How am I going to work, how am I going to eat, how am I going to function in this world?" But I just kept trying. I definitely failed many times and I had my bad days, when people were rude to me or insensitive. But I also had great days. People surprised me with kindness and empathy.
Talking on the phone, or everything I've relearned, at first seemed so unattainable. If you told me six months ago that I'd be doing phone interviews, I would have said you're crazy. Just try, take it slowly, and see how you do.
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