Facing my second squamous cell carcinoma diagnosis

I was hoping I had put cancer behind me. I knew I would always have to watch for any signs of recurrence, travel to Houston regularly for checkups and even have a biopsy if anything suspicious popped up.

But in April 2015, I was back at square one. I’d noticed a suspicious looking, cyst-like spot on the left side of my tongue a few weeks earlier, so during my checkup at MD Anderson, I discussed it with my doctor, Eduardo Diaz, Jr., M.D.

The biopsy showed that my tongue cancer – specifically, squamous cell carcinoma of the left lateral tongue – had returned.

With this second diagnosis came a flood of questions – some of which I’ve been hearing since my first tongue cancer diagnosis in 2007. Here are my answers to some of the questions people ask.

How does this squamous cell carcinoma diagnosis feel compared to your first one?
This time seemed different.  I have learned so much about squamous cell carcinoma and treatment protocols. I know the basic “If this happens, we have to do A. If the biopsy is this, we have to do B.”

This gives me a different perspective. It often feels like I am waiting to go from annoying cancer to next-level cancer and the treatments that accompany it.

How do you talk to your sons about cancer?
When I was first diagnosed, my four sons were newborn, 2, 6 and 8 years old. They were perfectly happy with the explanation, “Mommy and Daddy have to go on a trip because my doctor lives in Texas.”

Now, they’re 8, 10, 14 and 16, and each one needs a different level of information. My husband and I try to reassure them while providing age-appropriate details. We don’t share every medical detail and tend to answer their questions matter-of-factly as they come up. We keep our lives as normal as possible -- whatever normal is with four sons!

How did you know you had tongue cancer? What did it look like? What did your doctors do?
A few years before my squamous cell carcinoma diagnosis, I had a red, painful ulcer-like spot on the side of my tongue. The first two biopsies showed dysplasia, and my doctor told me not to worry about it.

I didn’t think much about it until the painful, ulcer-like lesion came back a third time.

At that point, I was pregnant with my fourth child. My ENT scheduled a surgical biopsy during my third trimester. This time, it showed cancer. I was immediately referred to MD Anderson.

Aren’t oral cancers like yours caused by overuse of tobacco and alcohol?
Stereotypically, oral cancers affect older men, smokeless tobacco users and heavy drinkers. But more young people without these risk factors have been diagnosed in the last decade. The human papillomavirus (HPV) has been linked to this increase in oral cancer cases.

How was your squamous cell carcinoma treated?
I’ve had nine biopsies of the same area of my tongue. Some were extensive surgical biopsies and also partial glossectomies. The most recent was in April 2015, when I was diagnosed with a recurrence.

I have had two needle biopsies of lymph nodes in my neck. Both were negative for cancer.

I haven’t needed radiation, proton therapy or chemotherapy so far.

Do you have physical issues from all the surgeries?
Fortunately, I can still eat and drink without much of a problem. I do have a slight speech difference. And of course my tongue just doesn’t work as well as it used to after all of the surgeries. But I haven’t had any significant changes, thanks to Dr. Diaz’s expertise

What’s your advice for others facing cancer?
Find a doctor you like and trust wholeheartedly. Focus on one appointment, scan and biopsy at a time. Don’t let cancer thoughts consume you.

I’m not always the best at following this advice, but when I do, it makes a big difference.

What's your prognosis and plan going forward?
I go to MD Anderson every few months for checkups, and I undergo CT scans every six months. My results have all been good since my last surgery in April of this year. 

Most importantly, I am trying to take my own best advice -- focus on one appointment and one scan at a time.