Empathy, Tragedy, and Progress

She was 28 years old when she first noticed the spot on her tongue.

Red and bleeding, it resembled a pinpoint ulcer along the left lateral border. She went to her doctor, with understandable concern. And he reassured her it looked like a small aphthous ulcer. He told her if it did not get better, or got larger, to come back and see him.

Shortly after that, she became pregnant with her third child. And as anyone would in that situation would likely do, concerns of small aphthous ulcers were placed into the back of her mind as her and her husband went about planning the new addition to their family. Months went by, until one day in her third trimester, she was brushing her teeth and noticed blood on the toothbrush. She took a look at her tongue again, only this time to find a large hard mass in place of the small red spot from before.

What followed was more doctors visits, biopsies, referrals, and a diagnosis... squamous cell carcinoma of the left lateral tongue. She was told there would need to be surgery, but not for another few weeks until her baby was safely delivered.

The baby was safely delivered.

It was the morning of her operation when our paths first crossed. I introduced myself to her, and the entirety of her large, supportive family in the pre-op room. I made small talk, and she spoke in articulate words with a slight British accent. I asked if she had any questions, and she shook her head no.

Back in the operating room, it was business as usual. Help transfer the patient to the OR table. SCDs on. Bovie pad on. Extra blanket on. Warm air circulating. She succumbs to the general anesthetic. Intubation successful. Rotate table 180 degrees. I go out to scrub with the attending and resident, yellow iodine dripping down my forearms into the sink. Sterile towel. Sterile gown. Gloves. Spin. Prep the operative field.

We are finally ready to begin, and we finally get a good look at the tumor. It it large, extending from the lateral edge nearly to the tip. Fingers of white parasite extending deeper into the tissue.

Calmly, the operation commences. According to the pre-operative MRI, it looked like the tumor did not creep too deep. The hope was to get in, get clean margins, and close primarily, leaving her enough residual tissue that her speech and swallowing would be largely unaffected. The dissection proceeds around the mass, and finally the bovie tip penetrates out the opposite side. Frozen sections are sent off to pathology, and we breathe a sigh of relief for the moment. We sit and absorb ourselves in the BB King playing from the iPod. We have a discussion about how much we enjoy the blues.

The phone rings, pathology on the other end. "Frozen sections show margin passing through tumor." In the passing 3 hours, more tissue was taken, more sections were sent, more phones ring, and more swear words penetrate the soft, solemn blues of BB King wafting through the air. The partial glossectomy transforms itself into a hemoglossectomy, which creeps towards a near total glossectomy with each positive margin. Finally, margins are clear and we close, folding the thin strip of remaining tongue over onto itself and securing it with the appropriate number of half hitches.

I am reminded on my last question to her before the operation, when she simply shook her head and smiled. What brings me back to that moment is that for the next few days, her sole mode of communication involves those same left-right, upwards-downwards motions. Any pain? Shake no. Comfortable? Shake yes. Ok, more of the same today. Try to get out of the bed. She turns out to be quite lucky in some ways. Her swallowing was intact. And she will eventually speak again, though not without a heavy lisp and not until the burns of the radiation therapy subside and many months of speech therapy are completed.

There were two things that stuck out to me as particularly profound about this case, about this mother of three.

First occurred during those nauseating hours in the OR as frozen section after frozen section returned with tumor as we burrowed deeper into tongue tissue. With each subsequent resection, I could not shake the feeling of how horribly I felt for the patient, that we were slowly robbing her of her chance at a normal life. Part of that is good, I think. It means these past four years of medical school have not robbed me of those intimate emotions, of the ability to feel empathy for the person prepped and draped in front of me. But I was also struck by how calmly and confidently the attending surgeon, a man I greatly respect and admire, went back to work with each setback... steadfastly marching with tenacity towards negative margins. He knew the data, but more importantly he had lived the data in his many years of practice. He knew that if we did not get clear margins, this woman in front of us would be robbed of her chance to see her children grow old. So he could bury those emotions in order to do what is necessary. Me, I could not yet detach myself from those feelings of horror, because I was not yet convinced it was necessary. Quite bluntly, I have not seen enough people die to be convinced.

It reminded me how much time and space still yet separate myself, inquisitive pitiful fourth year medical student, from the title of surgeon. Because in that situation, I'm not sure I could have done what was necessary. That was humbling to realize.

The second profound moment came the next week in clinic when the attending, chief resident, and myself saw the name of a 32 year of woman on the schedule for follow-up. She too had developed a tongue cancer noticed after becoming pregnant. She too required an operation and radiation. We got to talking, and the chief resident remembered another young woman from her second year of residency who had a tongue squamous cell. We look at her chart and notice she was pregnant. "Interesting," the attending states, and we go to see our follow-up patient. Somehow the conversation turned to what we were discussing earlier, and the patient states she also knew another young woman in the south part of the state who had tongue squamous cell. The momentum of the conversation between the three of us accelerated throughout the day. By the end of clinic, we had assembled a list of 9 young pregnant women with tongue cancer who had been operated on in the past several years. Questions floated about to the tune of the scientific method. Why pregnancy? Why are we seeing more of these tumors? What's different about these tumors? Are there unique ways of approaching treating them?

And so a hypothesis was born. And a plan. There would be a study. IRB protocols and special stains and information databases and eventually a publication. And hopefully... progress. And I thought that all is not so horrible after all.