When Itzhak Brook, M.D., was in medical school over 60 years ago, he remembers seeing patients with laryngectomies and thinking he would rather die than lose his vocal cords. But when he was diagnosed with throat cancer almost 13 years ago and was faced with the surgery himself, he didn’t hesitate.
In fact, being a laryngectomee has opened new worlds for Dr. Brook: He’s a more sensitive pediatrician and has written two books to share what he’s learned from his experience with cancer — not to mention the impact he makes lecturing as a professor of pediatrics at Georgetown University.
“This bad experience has opened up new gates for me to help other people,” he says. “I made lemonade out of lemons.”
HealthCentral spoke with Dr. Brook about what it was like to be diagnosed with cancer as a physician, how he learned to speak with a laryngectomy, and lessons others can take from his experience.
HealthCentral (HC): What was your reaction to your initial cancer diagnosis?
Dr. Brook: I was in disbelief; I couldn’t really believe I had throat cancer. My doctor called me and said, “Why don’t you come to my clinic tomorrow and discuss the results?” And I knew immediately something was wrong. When I went in the next morning, he was in surgery, so I went directly to the pathology department and I requested to look up the results (I worked in the same hospital).
So I looked them up and I saw the diagnosis: squamous cell carcinoma. I went to the pathologist and asked her to look at the microscopic slides with me and she looked and agreed with the diagnosis. I was shaken — but I accepted the reality. It was very difficult.
I did not smoke or drink, but the reality is people without risk factors do still get throat cancer — just not as often. I was the exception. It made it a little bit harder to accept, that even though I didn’t do anything risky, I still got it. But people who smoke and drink who get it may feel guilty, so in a way, it might be harder for them — although I don’t really know how they feel.
HC: And then you had a recurrence — what was that like?
Dr. Brook: That was very unfortunate because even though I followed what my doctor told me and came to the clinic every month, they didn’t recognize it [had recurred] until I’d had symptoms for about six months. They didn’t do the physical exam the way they should have; they relied on CT and PET scans, which didn’t show it. And then I needed to have another surgery.
There’s a lesson in what happened to me: I didn’t go to physicians who had a lot of experience in my type of cancer or in the technique they wanted to use, which was laser. They didn’t take the tumor out; they took the scar tissue. And because they failed, it was impossible to use this technique again, and the only way to cure me was a laryngectomy. I went to a specialist in New York to do it. He was someone who did it two to three times a month, whereas the local doctors I had seen did it only two to three times a year. So my new doctor had a lot more experience and he did a perfect job.
Just a good basic physical exam, which many don’t do anymore, can discover a lot of things that scans don’t — scans still have a limit to their ability to detect things.
HC: How did you decide which type of speech to learn after your laryngectomy?
Dr. Brook: The method I speak is the newest and easiest to master. I chose to speak using trachea-esophageal speech. The surgeon placed a small tube called voice prosthesis made of plastic, which connects the trachea to the esophagus. It’s still something you need to practice and learn with the guidance of a speech pathologist, but it gives the clearest voice.
The other speaking methods are esophageal speech and speaking using an electrolarynx. Esophageal speech does not require any prosthesis or surgery, but it takes a lot of practice to learn it. The electrolarynx is a device that produces vibrations, and people put it under the chin. The voice is very mechanical and robotic and not as pleasant, but it’s very easy to learn.
So I chose the tracheoesophageal speech because it was the best and easiest to learn. You can speak right away, but there are ways to improve it, like speaking slowly and not speaking more than four to five words before you take a breath. You should also over-articulate your words. I give a lot of lectures, and speaking slower was an adjustment I had to make, but I learned to slow down and economize in words and get to the point and synthesize my ideas.
HC: What do you find challenging about daily life with a laryngectomy?
Dr. Brook: To maintain my ability to speak, I need to clean and place a filter over my stoma that allows me to speak, and that takes up to 30 minutes a day. I also need to make sure my mucus is clear, which is very difficult, especially in cold weather. So I need to maintain high humidity in my house and places I go. When it’s very cold, it’s difficult for me to breathe, so that limits me a little bit, and I need to move slower.
Also, I have difficulty swallowing because there’s an area where they removed the cancer that’s narrower in my esophagus, so I struggle when I eat. I need to eat food that’s easier to swallow, like yogurt or milk or soup, and I have to chew my food very, very well.
I also have to start getting dilations of the esophagus, which will need to be repeated every two to three months. And my voice prosthesis needs to be replaced every two to three months.
But on the other hand, I do bike and I do hike in the right conditions, and I even kayak — so it’s not a complete handicap.
Life as a laryngectomee is not easy. People don’t always understand me well; even speaking on the phone is a challenge because people often don’t understand me. There is discrimination laryngectomees face. I may not be as discriminated against because I’m lucky to work with people who accept it, but people have difficulty maintaining jobs and it causes social isolation, depression, and suicide.
And there’s the deformity. I’m not affected by it, but some people feel very uncomfortable with what we call “a hole in the neck.” It’s not very nice or aesthetically pleasing even when it‘s covered. For me, it’s a badge of honor that I had cancer and I go on without it interrupting my life. But it’s not always easy for other people; they feel embarrassed.
HC: How has being a laryngectomee changed your practice and teaching of medicine?
Dr. Brook: I think physicians don’t realize how devastated patients can be when they’re diagnosed with a serious illness — my whole world was shattered. When I went to my internist and told him I had cancer, he gave me a hug. And that taught me a very important lesson: I call it “the power of the hug,” but it could be any human touch or concern.
Cancer affected me later on when I came back to work: I learned through my own eyes how difficult it is for a patient with a serious diagnosis, whether cancer or another disease, and how important the concern and caring of the doctors and medical team is.
I changed the way I treat patients; I became more empathetic and able to understand what’s going on in their minds. I convey that to patients with a physical hug or an emotional hug, which means giving them the feeling that I really, truly, deeply care, and I will be there for them when they need me.
[Interview has been condensed and edited.]