舌癌并不常见, and it's especially unusual for it to strike a young person who doesn't smoke or drink heavily. 凯特·布朗年仅32岁, 刚结婚,开始一份新工作, when she learned that a spot on her tongue was stage 3 tongue cancer. 布朗被转介到加州大学旧金山分校健康中心, where surgeons recommended a drastic treatment that was her best shot at survival: a total glossectomy, 或者拔除舌头, 然后是化疗和放疗.
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Life After Tongue Cancer and Total Glossectomy
四年后, 布朗没有癌症,而且, unlike many patients who undergo total glossectomy, 能听懂吃饭和说话.
你是怎么发现自己得了舌癌的?
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. 十大赌博平台排行榜又给我开了抗生素. When my doctor looked in my ear she didn't see any swelling, 但是耳朵的疼痛变得难以忍受. 我从来没有这么痛过.
在我的内心深处, I knew at that point that something was terribly wrong, 但我不确定那是什么. 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, 这个手术, 然后是放疗和化疗, 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. 如果你最终还是要做手术的话, 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.
这是我感觉很强烈的事情. I've befriended patients who passed away because they went down that path.
你能描述一下你在加州大学旧金山分校的手术吗?
我有三个外科十大赌博平台排行榜,他们是一个团队. They removed my whole tongue – due to the extent of the tumor they couldn't save any of it, 不幸的是. 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?
我好像浪费了两天时间. 我只是处于迷惘的状态.
When I woke up I was on a feeding tube, I had a tracheotomy and couldn't speak at all. 我在脸上做了引流以消肿, 但即使有排水管, 你的脸还肿到这里. 我的第一印象是,“哦,天哪." You think you'll be like that forever, but you won't. 如果你今天看到我,你几乎看不出来. I have scars but I am not disfigured at all.
我在十大赌博平台排行榜住了13天. 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. 我不能完全入水, 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?
这是一个非常缓慢的过程. I still feel like I evolve every few months, especially with my speech.
手术后, 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.
一开始我和语言治疗师一起工作. 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, 但如果我喝得太多, I didn't have the appetite to work on solids. 这是一个艰难的平衡.
Learning how to eat again was the hardest thing I'd ever done. 我真的在流汗. It would take me about two hours to eat bites of teaspoon-sized food. 这太令人沮丧了——我很饿! I lost about 10 or 15 pounds during treatment.
我现在什么食物都吃, although I need to be careful to take small bites and because of the radiation, 我受不了辣. 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.
重新学习说话怎么样?
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. 我受够了拿进拿出. 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?"
我大约两年前停用了它. 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, 所以我一直在强迫自己, 让对方有耐心. 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, 请让我再说一遍, 没什么大不了的. 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!“幸运的是,我们有足够的积蓄来支付这笔费用. Between the surgery and starting chemo and radiation, I had my eggs harvested and frozen at the 加州大学旧金山分校生育保护项目.
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.
你现在的预后如何?
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. 你为他们做什么?
Oralcancerfoundation.org (OCF) was a lifesaver for me when I was first diagnosed and went through treatment. 我很害怕. 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.
我是OCF的患者倡导者. 我在论坛上回答问题, 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, 对患者的认识和支持, 家庭和照顾者.
How did OCF help you when you were a patient?
我是一个绝望的人,尤其是刚开始的时候. 我不知道会发生什么. 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, 形势的严重性真正显现出来了. 我认为, "How am I ever going to endure this? 我以后的生活会怎样?" 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, 我告诉他们, “只是想让你知道, 我现在的生活很好. 事情是这样的."
这很好. 我帮助过很多人. I made a promise to myself [when I was sick] that if I get through this, 我必须以某种方式回报他们. 我觉得这是我的贡献.
What advice would you give to someone facing a frightening health issue?
把一只脚放在另一只脚前面. 不要过多考虑最终的结果. Just try to deal with how you're feeling that day, emotionally and physically.
在这个过程中, 我认为, “我要怎么工作呢?, 我要怎么吃呢, 我将如何在这个十大赌博平台排行榜上发挥作用?“但我一直在努力. I definitely failed many times and I had my bad days, when people were rude to me or insensitive. 但我也有过美好的日子. 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.