Linda Disalvo

At the time of my diagnosis, I was working as a patient advocate at a military hospital for twenty years.

I had always put my work before my health, rarely going to my yearly doctor and dentist checkups. Then one day, I couldn’t open my mouth. It wasn’t painful, but I couldn’t even wiggle a spoon in-between my teeth. It felt like I had severe lockjaw. Two weeks later, when my symptoms still hadn’t improved, my son convinced me to get it checked out. 

I made an appointment at the dentist the next week, where imaging showed I had a massive tumor in my mouth. I was shocked. The thought of cancer had never even crossed my mind. I returned to work that afternoon, frantic, uncertain as to what my next steps should be. My boss immediately recommended I see an oral surgeon. 

The doctor called me and said he didn’t feel comfortable proceeding with the operation

The oral surgeon took an additional X-ray to confirm what the dentist had seen, and suggested I undergo a biopsy to determine what the tumor was. During the biopsy, I overheard the doctor saying it looked cancerous, and I immediately fell apart. I couldn’t have been more upset. When I returned in a week for the final results, the doctor told me that the biopsy results confirmed the tumor was cancer. However, the good news was it wasn’t going to spread. After he outlined my next steps, I asked him how many of these operations he had done before. He told me six. How was I supposed to trust a man who had only performed this procedure a handful of times!

I ended up getting a second opinion from a doctor in Albany who agreed with the original operation proposed. I decided to go ahead with the procedure, but then the night before surgery, the doctor called me and said he didn’t feel comfortable proceeding with the operation. I couldn’t believe it. I was back to square one. The next doctor I saw said the procedure would require me to have a feeding tube and a tracheostomy tube for an entire month after the operation. Additionally, while she would be able to remove the tumor, a plastic surgeon would have to do the reconstructive portion. Again I didn’t feel comfortable that I was in the right place and decided to find someone who could do the whole thing. 

You don’t realize how much your saliva impacts your ability to speak and swallow until you lose it

Even though my insurance didn’t cover my appointment, I decided to go to New York City to visit an ENT specialist. Although he agreed I needed surgery, he said I would only need to have the feeding and tracheostomy tubes in for a couple of days after the surgery. This was completely different from anything I had been told before. I decided this was the best place for me. I felt more comfortable talking to him and his staff than in any other of the doctor’s visits for the last couple of months. 

Unfortunately, my insurance wouldn’t cover the operation here. I wrote hundreds of appeal letters to the insurance company begging them to reconsider. I finally found a doctor who agreed that that doctor in New York City could only do the surgery. He wrote to the insurance company explaining his decision. Those two weeks waiting for approval were more stressful than waiting for my diagnosis. It felt endless. Thankfully they finally agreed to cover it.

Do your homework… don’t rely on the first person that comes your way… seek out the physician…that is best for you

Immediately after surgery, I was able to open my mouth without a problem. The hardest part after the operation was dealing with the tracheostomy and feeding tube. Even though I knew they would be in, it is almost impossible to prepare for that mentally. The next step in my treatment was radiation therapy. The side effects of radiation were much worse than the treatment itself. Most of my saliva disappeared; I lost my sense of taste and some of my hearing. Water was my best friend at that time to keep my mouth moist. You don’t realize how much your saliva impacts your ability to speak and swallow until you lose it.

If I could give one piece of advice to those who are going through a similar journey is to do your homework. Don’t rely on the first person that comes your way. Seek out the physician and the team that is best for you. A second opinion can be life-changing. A second opinion gave me hope.