Just Diagnosed? What Stage 1 Oral Cavity Cancer Really Means for You

Receiving a cancer diagnosis can be overwhelming, but it is important to remember that being diagnosed with stage 1 oral cavity cancer means the cancer was caught very early. This guide is meant to provide you with educational information about your diagnosis, which you should use as a starting point for discussions with your oncologist and entire care team.

What is Oral Cavity Cancer?

Oral cavity cancer, often called mouth cancer, develops in any part of the mouth. This includes the lips, tongue, gums, the lining of the cheeks, the floor of the mouth, the hard palate and the area behind the wisdom teeth.

Dr Lillian L. Siu, a senior medical oncologist and clinical lead for the Tumor Immunotherapy Program at the Princess Margaret Cancer Centre in Toronto, Ontario, said in an interview with CURE that symptoms for the disease vary depending on where the tumor starts.

“This is a complex disease because head and neck cancer covers many anatomical sites, all the way from the oral cavity — from the front to the back — which is what we call the oropharynx, including areas like the tonsils, the base of the tongue and the bottom of the tongue. Then, you go further down into the larynx, which is our voice box, and even to what we call the hypopharynx, near the top of our esophagus.

Most of these cancers are squamous cell carcinomas, meaning they start in the thin, flat cells that line the mouth.

Stage 1 is defined as a very early stage of the disease. In this stage:

• The tumor is small, measuring 2 centimeters or less.
• The cancer has not spread to any lymph nodes in the neck.
• The cancer has not spread to any distant sites in the body.

Early diagnosis at this stage is a critical factor for a better outlook and is why treatment is often very effective.

How Is Oral Cavity Cancer Diagnosed?

The initial diagnosis of oral cavity cancer often begins with a routine dental or physician exam where a suspicious-looking area is found.

• Oral exam: Your doctor or dentist will thoroughly check your mouth and neck for any abnormalities like sores, white patches called leukoplakia, or red patches called erythroplakia, which do not heal.
• Biopsy: A small tissue sample from the suspicious area is removed and examined under a microscope. This is the only way to confirm if cancer cells are present.
• Staging: Once cancer is confirmed, additional tests are performed to accurately determine the cancer's stage and ensure it has not spread. For stage 1 cancer, imaging tests, such as CT or MRI scans, may be used to look at the extent of the tumor. These tests ensure the tumor meets the size criteria for stage 1 and confirm there is no spread to the lymph nodes.

What is the Prognosis for Someone With Stage 1 Oral Cavity Cancer?

The prognosis, or outlook, for stage 1 oral cavity cancer is very encouraging. When cancer is caught while it is small and localized, as in stage 1, the chances for a cure are at their highest.

• High survival rates: For localized oral cavity cancer, which includes stage 1, the five-year relative survival rate is often in the range of 80% to 90%, or even higher depending on the precise location. This rate compares people with the cancer to those in the general population.
• Prognostic factors: Your specific prognosis will depend on several factors, including the exact location of the tumor, how deep it has grown into the tissue and your overall health. Early detection is the single most important factor for a favorable outlook.

Treatment Options for Stage 1 Oral Cavity Cancer

Because stage 1 cancer is localized, the goal of treatment is to completely remove the cancer while preserving as much function of the mouth as possible. Treatment is usually highly effective and often involves one main approach.

• Surgery: This is typically the preferred and most common treatment for stage 1 oral cavity cancer. The surgeon will remove the tumor and a small amount of surrounding healthy tissue, known as a clear margin, to ensure all cancer cells are gone. Due to the small size of the tumor, the surgery is often minimally invasive, which helps reduce side effects and aids a faster recovery.
• Elective neck dissection: In some instances, depending on the tumor's characteristics, your surgeon may recommend removing a few lymph nodes in the neck, even if they look normal on scans. This procedure, called an elective neck dissection, is a precautionary measure to check for any microscopic cancer cells that may have spread. However, for a small stage 1 tumor, this is often not necessary.
• Radiation therapy: In some cases, high-energy beams may be used as an alternative to surgery, or if a patient is not healthy enough for surgery. Radiation aims to destroy the cancer cells while minimizing damage to surrounding healthy tissue.

“For a tumor that started in the oral cavity, in the tongue, the primary treatment tends to be surgery first, provided it's not going to be disfiguring or cause significant dysfunction, so that they can still maintain their speech and swallowing,” Siu said in the interview. “After surgery, patients would then have what we call adjuvant radiation or chemoradiation to ensure there is no local or regional spread of their cancer.”

Living With Stage 1 Oral Cavity Cancer

After treatment for stage 1 cancer, you will enter the survivorship phase. This involves regular monitoring and focusing on recovery.

• Follow-up care: Regular, frequent follow-up appointments with your oncologist and head and neck surgeon are crucial. These visits are vital for monitoring the surgical site, managing any long-term side effects and detecting any signs of recurrence early.
• Side effect management: Even with treatment for a small, early-stage tumor, you may experience temporary or long-term changes that affect your quality of life.

These can include:

• Speech and swallowing changes (Dysphagia): Surgery or radiation in the oral cavity can affect the muscles and tissues used for eating and speaking. Your care team can connect you with a speech-language pathologist (SLP) who specializes in head and neck rehabilitation. An SLP will assess your function and provide exercises to help you relearn how to swallow safely and speak clearly.
• Dry mouth (Xerostomia): This is a common and often permanent side effect if you received radiation therapy. Dry mouth can increase the risk of tooth decay and make swallowing difficult. Management strategies include using over-the-counter or prescription saliva substitutes, drinking water frequently, and consulting a specialized dentist for preventative care.
• Fatigue: Feeling extremely tired, which is not relieved by rest, is common during and after treatment. Talk to your doctor about ways to manage fatigue, such as light exercise, maintaining a balanced diet, and prioritizing rest.
• Lifestyle Changes: Taking proactive steps to improve your health is crucial for preventing recurrence and maintaining your overall well-being.
• Cessation of Tobacco and Alcohol: Quitting all forms of tobacco and heavily limiting alcohol consumption is the single most important lifestyle change you can make. The use of these substances is a major risk factor for developing a new cancer in the head and neck area. Your oncology team can provide resources or refer you to a cessation program.
• Dental and Oral Hygiene: Maintain rigorous oral hygiene. Schedule regular dental checkups, ideally with a dentist who has experience treating cancer survivors. Good oral care helps manage dry mouth complications and monitors your oral health closely.
• Nutrition: Focus on a balanced, nutrient-rich diet to support healing. If chewing or swallowing is difficult, a registered dietitian can help you develop a meal plan that ensures you receive proper nutrition without causing discomfort.
• Sun Protection: If your cancer was on the lip, protect it from the sun by using a lip balm with high-SPF sunscreen and wearing a hat, as sun exposure can be a risk factor for recurrence in this area.

Emotional support: Dealing with a cancer diagnosis and treatment is challenging. Do not hesitate to seek support from family, friends or a counselor. Patient support groups can also be a valuable resource.

“However, it's the long-term side effects that we have to address in the survivorship of these patients, such as dry mouth, difficulty swallowing or other long-term toxicities like hearing loss,” Siu said. “These are the more troublesome side effects that may have more lasting effects on their quality of life.”

Your Path Forward With Stage 1 Oral Cavity Cancer

A diagnosis of stage 1 oral cavity cancer places you at the most favorable point in the disease's journey. Treatment is highly effective when the cancer is caught early, which significantly increases the chance for a positive outcome.

This information is intended to empower you for your conversations with your oncology team. Ask questions about your specific tumor details, the proposed treatment plan and what rehabilitation or support services are available to you. Your team will create a personalized plan to give you the best chance for a full recovery.

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