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. 我用了抗生素治疗喉咙痛，但在喉咙痛消退后，那个斑点仍然在那里. 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. 我决定去看另一位十大赌博平台排行榜，他把我介绍给一位耳鼻喉科专家. 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.

许多人认为，如果他们接受手术，并选择化疗和放疗来拯救他们的舌头，这将是他们生命的终结——尽管这并不被推荐，而且大多数情况下都不起作用. If you wind up needing the surgery anyway, 放疗后的手术可能会有很多并发症——你的皮肤和血管不能很好地愈合. 此外，癌症可能永远不会离开你的身体，最终会转移.

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. 他们切除了我的整个舌头——由于肿瘤的范围，他们一点也救不了, unfortunately. 他们劈开了我的下巴，从我的下巴一直到我脖子的右侧. 这是极具侵入性的，但他们必须确保癌症没有扩散到其他地方.

然后，他们从我的左手腕和上臂区域取出组织，用它来重建舌头. 它更像是一个通道，而不是我以前的舌头，但它有一些感觉. 我的味觉相当好，因为味蕾遍布整个嘴巴，而不仅仅是舌头. 很多味觉都是通过嗅觉而来的，我的味觉一定很好，因为我仍然品尝和享受食物.

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. 这些组织没有任何肌肉组织，也不能移动，所以它只是阻碍了这个过程.

I do feel that the surgeons at UCSF saved my life, 他们重建我的方式让我能从这样一个剧烈的手术中尽可能地恢复过来.

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.

当我醒来时，我正在用喂食管，我做了气管切开术，完全说不出话来. 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. 我告诉他们我感觉好多了，这样我就可以回家了.

我出院大约三个月后，我们去墨西哥度假. 走出我的公寓，做一些让我感觉很好的事情，真是太棒了. I couldn't get in the water completely, but I would stand in the ocean up to my waist and just be like, "Aaaaaaaah."

我想强调的是，我非常幸运，有一群支持我的家人和朋友. 我想如果没有他们，尤其是我的丈夫布莱恩，我不会做得这么好. 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, 在我开始放射治疗之前，我试着吃尽可能多的不同种类的食物. 辐射会让你的喉咙很不舒服，还会彻底扼杀你的食欲. 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. 他们让你做的第一件事就是吞下水，因为水是最硬的，也是最薄的液体. 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, 虽然我需要小心小口咬，因为辐射, I can't handle spice. 辐射基本上会灼伤口腔内部，而口腔组织仍然很敏感. 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. 它有点像一个可移动的固位器，理论上它有助于消除口腔中的回声. Many people find it helpful, but I found it really socially awkward. 戴着它我不能吃饭，我不能运动，而且它弄脏了我的牙齿. I was sick of taking it in and out. 我必须适应两种说话方式，不管有没有假肢. Finally my husband said, "Why don't you just not use it?"

I stopped using it about two years ago. 对我来说，最好的语言治疗就是走出去，与十大赌博平台排行榜互动.

And you're still making progress with your speech?

This year I'm really working on talking on the phone. 任何与手机有关的事，我以前都避免，因为经历这些太痛苦了. 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. 我告诉那个人我有一点语言障碍，如果他们听不懂, just ask me to repeat, it's not a big deal. It's definitely very telling, how people respond. 当人们遇到有障碍的人时，他们会真正地展示自己.

化疗会损害生育能力，但在开始化疗前，你可以保存卵子?

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. 在手术和开始化疗和放疗之间，我的卵子被采集并冷冻在 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?

他们觉得随着时间的流逝，癌症很可能不会再复发了. That would be very, very rare for this type of cancer. 大约一年前，我停止了一年两次的核磁共振，现在我只做检查.

You volunteer with a patient education and advocacy website. What do you do for them?

Oralcancerfoundation.org (OCF) 在我第一次被确诊并接受治疗时是我的救命稻草吗. 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, 我与其他已经或正在接受与我相同手术和治疗的患者会面并进行交流. 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. 但如果你读得够多，听得够多，你就会变得麻木. 这个网站上也有博客，我在确诊后就开了一个.

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. 试着处理你当天的情绪和身体状况.

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. 我确实失败了很多次，当人们对我粗鲁或麻木不仁时，我也有过糟糕的日子. But I also had great days. People surprised me with kindness and empathy.

打电话，或者我重新学习的所有东西，起初似乎是那么遥不可及. 如果你六个月前告诉我，我会接受电话采访，我会说你疯了. Just try, take it slowly, and see how you do.