Mucosal melanoma survivor: Why I chose MD Anderson for my skull base
I am a three-opinion type of guy. Any time I need a job done, I always try to get three bids before making a decision. So, when I was diagnosed with a rare type of skull base tumor called mucosal melanoma of the sinuses, I approached it the same way.
The doctor who initially found thecancer in February 2021 said I needed major surgery, and that I might lose my right eye and a part of my forehead in the process. I didn’t like hearing that very much.
So, I went to three different cancer specialists to get their opinions. I asked all of them just one question: “How many other surgeries like this one have you performed?” Their answers made my choice pretty clear.
How I knew MD Anderson was the right place for me
The first specialist I consulted was located near my home in central California. His reply to my question was, “a few.” The second specialist I went to at a different major hospital said essentially the same thing. Neither of those responses did much to win me over, especially since both doctors seemed a little too eager to operate.
I wanted to believe that a better option existed, so I did some research and found MD Anderson. There, I talked first with skull base tumor surgeon Dr. Shirley Su. I knew right away that I’d found a winner. Because her answer to my question was, “Quite a few.” She also told me that she’d only recommend a treatment plan after she’d had a chance to consult with my entire team to evaluate my case.
That made me feel really good. Because I knew by then that MD Anderson was a highly specialized cancer hospital. And I liked the fact that it had experts in surgical oncology, radiation oncology, medical oncology, and so on, for virtually every type of cancer. Just knowing that that many specialists would be weighing in on my particular situation gave me a lot of comfort — and confidence that my treatment plan would ultimately be successful.
As it turns out, it was. And I’ve been cancer-free now since Oct. 27, 2021.
My skull base tumor treatment
My biggest worry before starting treatment was that I’d end up disfigured. I do a lot of public speaking, and I’m very visible at my job, so that was a real concern. But Dr. Su told me “not to go there” just yet. First, she wanted to try a combination of two immunotherapy drugs — ipilimumab and nivolumab — that she, medical oncologist Dr. Jennifer McQuade, head and neck surgeon Dr. Amy Hessel, radiation oncologist Dr. Ahsan Farooqi, and neurosurgeon Dr. Shaan Raza all thought would shrink my tumor.
I had three infusions of those two drugs over a three-month period. Nothing really happened after the first two. But by the time Dr. Su and Dr. Raza actually performed the surgery to remove the tumor on May 24, 2021, it had shrunk by 95%. All of the cancer cells they removed were dead, too, which made the 13-hour surgery go a lot easier. Dr. Raza and plastic surgeon Dr. Matthew Hanasono performed the reconstruction.
A few weeks later, I started 20 rounds of radiation therapy to kill any microscopic cancer particles that might have been left behind. I finished those on July 26, 2021. But I’ll continue to receive monthly immunotherapy infusions for at least another year, just to make sure it’s gone.
My skull base tumor treatment side effects
Today, I am back at work and doing well, though my eyes get uncomfortably dry at times. My vision is no longer 20/20, and I also don’t have my full sense of taste back. That’s been difficult, because I’m a certified master chef with an astute palate. And I’ve been working in the restaurant industry for more than 50 years. Food is my passion. But right now, I can only taste a few strong flavors, like corn and martinis.
Still, my hair grew back after I lost it, and I wasn’t expecting that to happen. So, I’m hopeful that one day, my sense of taste will return as well. Dr. Su says it can take up to a year to recover completely from cancer treatment, and it’s only been five months since I finished my radiation therapy.
I know I’ll never have 100% of my taste sensation back, because I lost about 30% of it from surgery. But if I could reclaim just a bit more of it, I’d be the happiest chef in the world. Even if I never do, I’m still pretty happy. Because my forehead and right eye are intact. I enjoy my life. And, I can still spend time with my sons and grandkids. That’s the most important thing.
Why I tell people to go to MD Anderson
Whenever anyone mentions cancer to me now, I tell them to look into MD Anderson right away. And if they ask me, “Why would I want to go all the way there?” I say, “Because I did.” Then I watch their eyes widen and their expressions change as I tell them all the things that MD Anderson has done for me.
Nothing in life is ever certain. And I realize that some people are not going to make it, no matter what their doctors might do. But you’ve got to go to the place that offers you the best chance of survival. For me, that was MD Anderson.