Head and Neck Cancer – My Story with Cancer

Intro by Innocent F Chia

As my right hand was clenching my left wrist under the piercing lights and high-pitched sound of the drill that my dentist was maneuvering to prep and fill those cavities, it dawned on me that I had broken a promise... Over a month ago in April, my colleague and cube mate at IBM shared this one-of-a-kind story that I intended to publish for internal consumption only. But her narrative was so potent, as you hopefully will share, I felt it in my gut that even one person benefiting from it on this blog would be tremendous. It is a story to make you to appreciate your dentist more and shove the drill phobia where it belongs...

By Michelle Lucas**

April is Head and Neck Cancer awareness month. Unlike breast and prostate cancers, oral cavity and pharynx cancers do not receive much coverage in the media or have widely recognized fund-raising and support groups. Until 2003, I never really gave it a thought.

Eleven years ago, just eight months after our wedding, my husband was diagnosed with oral cancer and our lives were changed forever. His cancer cells were located on the right side of his tongue, near the back of his mouth. The surgery to remove the cancer required the removal of 22% of his tongue, as well as the majority of his lymph nodes and salivary glands on the right side of his neck. Because the surgeon was able to get clear margins, meaning complete removal of the cancer cells along with a small margin of healthy cells, radiation treatment was not recommended. It was determined his cancer was Stage I. For the next two years, he made the 75 mile drive to Peoria, IL, every month for checkups with the surgeon. Then for another two years, the checkups were scheduled once each quarter. When he reached the five-year mark, we celebrated – although it was a tentative celebration.

Most cancers of the oral cavity and pharynx can be tied back to tobacco and alcohol use. My husband has been a smoker since the age of twelve. At the time of his diagnosis, he was smoking two packs a day. Over the next year or so, he tried several times to quit, but was never successful. By the time he hit the magic five-year milestone, he was back to smoking without even trying to quit.

Then in January of 2011, his dentist saw something of concern. He sent my husband to an oral surgeon in Dubuque. The initial appointment was just a few days after I had finally moved from Minnesota to Wisconsin, after being separated for six months during a job change/relocation for our family. A week later, we had the news. His cancer was back. Because it had been so long, it was not technically considered a reoccurrence of the original cancer. However, it was once again located on the right edge of his tongue, and this time, the cancer cells extended down to the floor of his mouth.

Not wanting to take any chances, we asked for a referral to Mayo Clinic. I had worked at one of their outlying clinics in Albert Lea, MN, and between their world-renowned reputation and my knowledge of the system, we didn’t want to go anywhere else. Surgery was scheduled for the end of February. We met with the surgical team several times prior to the day of surgery, but no amount of reassurance could calm us. For the first time, I could see the fear in my husband’s eyes. That fear was not there the first time around. But then again, the first time around, there was no discussion of tissue transplant. Not knowing how much of his tongue would have to be removed, we had to have a micro-vascular surgeon and a soft tissue reconstructive surgeon on the team, ready to go if needed.

Here is one of the major results of oral cancer, specifically cancer of the tongue: If your tongue cannot be extended beyond your front teeth, you will not be able to speak properly. If too much of your tongue is removed, you will not be able to eat. The tongue is so crucial to these seemingly simple tasks, if it is not there, what was once second nature can no longer happen. This is what frightened my husband more than anything, and also why we were planning for the possibility of a tissue/vascular transplant.

The surgery lasted more than ten hours. I have to give the staff at Mayo Clinic kudos for having a system that not only runs like a well-oiled machine, but keeps the families of their surgical patients updated regularly. They have a monitoring board, and every patient is given an identifying number. The status of the patient starts at “Pre-op Prep” and is updated with every move – I knew when he was wheeled into the OR, when he was administered anesthetic, when the first incision was made, and when the last knot of the last stitch was tied. Surgical nurses came to meet with me every two hours to give me a personal update, and make sure I was OK and was taking care of myself – in other words, they made sure I ate, moved around, and stayed hydrated.

My husband spent a week in the hospital. He had drainage tubes in his neck, and a restricted diet. Luckily some of our worst fears had not come to fruition. The transplant team was not needed.

The second surgery removed another 13% of my husband’s tongue, as well as lymph nodes and salivary glands on the left side of his neck. Once again, clean margins were taken, and no cancer cells were found in the nodes. He does have some difficulties speaking certain words. Due to nerves severed during the neck dissection to remove the lymph nodes, he does have issues with muscle control, which cause him to drool, particularly when he is tired. And because so many of his salivary glands have been removed, he has constant dry mouth, which leads to a whole other world of problems. He was told he will likely lose most of his teeth well before the age of 65. Eating is difficult because he doesn’t have the natural levels of saliva to moisten the food as he chews. In addition to all of that, the lack of lymph nodes leaves him more vulnerable to germs, and when he does catch a cold, it is more severe, and takes longer to recover because he doesn’t have the body’s natural filtration system.

He continues to struggle with smoking. He has quit several times in the past few years, but has always fallen off the wagon during times of high stress. He is currently in one of those battles, having quit for a month, only to start again when work became very stressful. Easter Sunday is his target quit day. I can only be there to support him, and be patient with him. No amount of nagging, begging, anger or tears will make him quit. He has to do it for himself.

Now, for the boring stuff. Some statistics.*

Oral cavity and pharynx cancers make up less than 3% of all newly diagnosed cancer cases. Unfortunately, the 5-year survival rate for head and neck cancers is considerably lower than breast or prostate cancers.

Cancer	Stage I	Stage II	Stage III
Head and Neck	82.7%	60.5%	37.3%
Breast	100%	93%	22%
Prostate	99%	99%	28%

Most head and neck cancers (47%) are diagnosed at stage two. One reason for this is the simple fact that there is no standard screening for these cancers. In addition, many employers do not offer dental coverage, leading to a lack of oral care. Add to that the fact that irritations in the mouth are frequently ignored, with people assuming it is a canker sore or other irritation that will go away on its own, and you have a recipe for disaster. The next time your dentist grabs your tongue with a piece of gauze and pulls it out, know that he is checking for cancer or other irritations that could lead to cancer.

The majority of head and neck cancers are diagnosed as squamous cell carcinoma, meaning the cancer originated in the thin, flat squamous cells that line the lips and oral cavity. Visually, they appear as white patches of cells. Squamous cells make up most of the skin’s upper layers, and approximately 700,000 cases of squamous cell carcinoma are diagnosed each year in the US.

Surgery to remove the cancer is the primary form of treatment, assuming the patient is a good surgical candidate. Non-surgical treatments include topical chemotherapy, radiation, and systemic chemotherapy. However, for head and neck cancers, systemic chemotherapy is only used if the cancer has metastasized, and radiation is used for those whose cancer has metastasized or have a high-risk squamous cell carcinoma. The use of radiation on the head and neck leads to multiple complications, such as mucosal lesions, salivary gland hypofunction (decreased salivary gland secretions), Xerostomia (oral dryness affecting taste, swallowing, and speech), atrophy of the tongue surface, atrophic and fragile oral mucosa, dry, crusty lips, to name a few.

So why am I sharing my story? Because I can only hope that at least one person tries one more time to quit smoking, or one person makes an appointment with a dentist to have a sore spot in their mouth checked out. Because at a family reunion just two months after the first surgery, one of my mom’s cousins heard our story, and when she returned to Wyoming, made an appointment with her dentist and was diagnosed with cancer while it was still Stage I. Because since the age of ten, our daughter has worried that she will lose her dad before she grows up.

Because this type of cancer gets so little recognition, and so little information is pushed out into the spotlight, most people only associate it with chewing tobacco. That is so far from the truth. This type of cancer will change lives. It can steal your ability to talk, which would have forced my husband to give up the job he had worked 25 years to achieve. It can steal your ability to eat, leaving you with a feeding tube for the rest of your life. And of course, it can steal your life. With almost 50% of cases diagnosed at Stage II with a 5-year survival rate of 60%, the odds are not exactly favorable. I can only speak for myself and our daughter. The last eleven years have been an emotional roller coaster. I’ve had to consider what life would be like if I could never have a conversation with my husband ever again, never cook a special meal for him. And worst case scenario, what life would be like without my husband. My daughter worries that he won’t get to see her graduate from college, or walk her down the aisle, or spoil her children. The emotional toll can be overwhelming.

*Statistics are courtesy of www.cancer.gov and www.cancer.org

**Michelle is a Project Office Business Analyst and Contract Management Advisor.