• Initial Symptoms (July-August 2014):
  • 5 kg weight loss (July), followed by 7 kg (August), totaling 12 kg rapid weight loss.
  • Pale complexion (noted by mother), loss of appetite, onset of mouth ulcers.
  • Mouth ulcers persisted beyond 1-2 weeks, leaving residual marks.
• Initial Response and Misdiagnosis (August-September):
  • Visited dentist: Diagnosed as “stress-induced transient mouth ulcers.”
  • Difficulty eating led to work leave and eventual resignation. Ulcer marks persisted.
• Acute Symptoms and Emergency Visit (Late September):
  • Pulsating sensation in tongue, severe pain, excessive drooling, tongue swelling (up to jaw).
  • Local hospital visit: Pus drainage, followed by loss of consciousness. Transferred to another hospital the next day.
• Diagnosis (Mid-October):
  • Tongue biopsy (removal of tissue for testing).
  • Diagnosis: Tongue cancer (squamous cell carcinoma), stage 3-4, with lymph node metastasis.
  • Doctor’s explanation: “A 12-hour surgery is needed, planning to remove half the tongue.”
• Treatment (December 2014-February 2015):
  • Admission (December 25): Admitted on Christmas, daily preoperative tests.
  • Surgery 1 (January 5, 2015): Removed three-quarters of the tongue (more than the planned half). Only one lymph node metastasis confirmed (initially four suspected). Surgery lasted 12 hours.
  • Postoperative Complications (Mid-January): Infection in transplanted tissue, 39°C fever, pus removal surgery (minor procedure).
  • Reinfection (Late January): Another infection, requiring pus removal surgery. Wheelchair movement cited as a cause.
  • Discharge and Readmission (Mid-February to April): Discharged mid-February, but reinfection led to readmission. Two months of infection treatment.
• Rehabilitation (Late January 2015 Onward):
  • Transitioned from nasal tube feeding to jelly intake. Began eating and speech rehab.
  • Hospital rehab was ineffective; she practiced speech (especially “k” sounds) through conversations with laypeople.
• Aftereffects:
  • Speech impairment from three-quarters tongue removal (subtotal resection). Difficulty controlling drool.
  • Eating difficulties (struggling with solid foods).
  • Muscle weakness (a challenge for esthetician return).

This tongue cancer journey’s treatment was complicated by delayed diagnosis and infections, but Mariya’s strong will supported her recovery.

Medical Explanation of Tongue Cancer in the Tongue Cancer Journey

Tongue Cancer is a malignant tumor of the tongue, typically squamous cell carcinoma (originating from flat epithelial cells lining the skin or mucous membranes). Below is a detailed explanation:

• Causes and Risk Factors:
  • Smoking, excessive alcohol, human papillomavirus (HPV) infection, chronic irritation (sharp teeth or dentures).
  • Mariya’s case, a rare young-onset (20s), had no clear risk factors.
• Symptoms:
  • Persistent mouth ulcers, tongue swelling/pain, eating difficulties, weight loss, neck lymph node swelling.
  • Mariya’s initial symptoms (ulcers, weight loss, eating issues) were typical.
• Diagnosis:
  • Biopsy: Tissue removal for microscopic cancer cell confirmation.
  • Imaging: CT, MRI, PET to assess metastasis and tumor spread.
  • Mariya’s biopsy confirmed stage 3-4 with level 4 (severe) lymph node metastasis.
• Treatment:
  • Surgery: Tumor and surrounding tissue removal. Lymph node metastasis requires neck dissection.
  • Radiation Therapy: Destroys cancer cells with radiation.
  • Chemotherapy: Uses drugs to suppress cancer cells. Mariya underwent surgery only, avoiding radiation/chemotherapy.
  • Mariya’s treatment: Three-quarters tongue removal (subtotal resection) and lymph node excision.
• Prognosis and Aftereffects:
  • Stage 3-4 five-year survival rate: ~30-50% (early detection: 70-90%).
  • Aftereffects: Speech impairment, swallowing difficulties, drool control issues. Mariya’s subtotal resection significantly impacted speech.
• References:
  1. Japan Head and Neck Cancer Society: Tongue cancer diagnosis/treatment guidelines (https://www.jshnc.org/guideline). Details on diagnosis criteria and staging.
  2. National Cancer Center Japan: Cancer Information Service (https://ganjoho.jp). General information on tongue cancer symptoms, treatment, prognosis.
  3. American Cancer Society: Tongue Cancer Overview (https://www.cancer.org). Global perspective on tongue cancer.

Background: Tongue Cancer Surgery and Speech Impairment

In January 2015, Mariya Kijima underwent surgery for tongue cancer (stage 3-4), experiencing a subtotal glossectomy, which involved the removal of three-quarters of her tongue. This procedure significantly impaired her ability to speak and swallow due to the loss of most of her tongue. Medically, the tongue plays a critical role in articulation, with the following functions affected:

• Role of the Tongue: The tongue interacts with the palate and teeth to form sounds and regulate airflow. For instance, “k” sounds (k-row in Japanese) are produced by contacting the back of the tongue with the soft palate.
• Impact of Subtotal Glossectomy: Removing three-quarters of the tongue restricts its movement, making certain sounds—especially those requiring tongue motion like “k-row” (k), “t-row” (t), and “s-row” (s)—unclear. Additionally, controlling saliva becomes challenging, increasing discomfort during speech.
• Aftereffects: Kijima experienced speech impairment (dysarthria), swallowing difficulties, and excessive drooling. She noted considering a “bib” due to the significant daily impact of drooling.

Post-surgery, the hospital provided speech rehabilitation led by speech-language therapists (SLTs), but Kijima found it “ineffective” and pursued her own recovery methods.

Limitations of Hospital Rehabilitation

Kijima’s perception of hospital rehabilitation as “lacking effectiveness” stems from the following factors:

1. Standardized Approach:
   • Hospital rehabilitation involved standard articulation training (e.g., repeating specific sounds, tongue-strengthening exercises) and vocalization practice (e.g., vowel pronunciation) by SLTs. These are designed for general speech impairments but may have been insufficiently tailored for Kijima’s severe case of losing most of her tongue.
   • Example: Exercises like “moving the tongue up and down” to strengthen it have limited efficacy when little tongue remains.
2. Overly Optimistic Feedback from Staff:
   • Kijima noted that hospital staff encouraged her with comments like “You’re speaking well” or “I understand you,” but when speaking with laypeople (e.g., friends), she was told, “I can’t understand you at all.” While staff encouragement provided emotional support, it created a gap in addressing actual functional speech recovery.
   • This discrepancy likely arose because hospital rehabilitation focused less on “real-world communication.”
3. Mismatch in Motivation:
   • Kijima aimed to return as an esthetician and communicate on par with others, a strong personal goal. However, hospital rehabilitation often targets “minimal functional recovery,” which didn’t align with her ambition for social reintegration.
   • Her specific life goals, like “wanting to talk on the phone” or “hang out,” made the hospital’s structured approach feel limiting.

Self-Directed Speech Practice: Conversations with Laypeople

Instead of relying on hospital rehabilitation, Kijima developed her own method of practicing speech through active conversations with laypeople, honing practical communication skills. This approach reflected her initiative and determination to reintegrate socially.

1. Rehabilitation Through Conversations with Laypeople

• Method:
  • Kijima engaged in conversations with friends and acquaintances—“ordinary people”—to identify speech challenges. Unlike hospital interactions with supportive staff, these real-world exchanges provided candid feedback.
  • Example: Being told “I can’t understand you” by friends helped her pinpoint which sounds or words were unclear.
• Effect:
  • Real-world conversations built her ability to adapt to actual communication scenarios (e.g., background noise, emotional intonation, conversational pace).
  • She emphasized “understanding how I’m perceived” and “identifying which words are hardest to convey,” conducting self-analysis.
• Specific Example:
  • During friend conversations, she noticed “k-row” sounds were particularly unclear, leading her to avoid such words or use contextually clear phrasing.

2. Overcoming “K-Row” Sounds

• Challenge:
  • “K-row” sounds (ka, ki, ku, ke, ko) require the tongue’s back to contact the soft palate, a motion severely limited for Kijima.
  • Example: Words like “kasa” (umbrella) or “kiru” (to wear) were unclear and hard for listeners to understand.
• Methods to Overcome:
  • Rephrasing: She explored alternatives to “k-row” words. Example: “umbrella” → “rain gear,” “wear” → “put on,” choosing words clear in context.
  • Repetitive Practice: Practiced specific phrases (e.g., “Did you bring an umbrella today?”) in front of a mirror, consciously adjusting tongue movements.
  • Feedback Utilization: Adopted expressions friends confirmed as “understandable,” building on successful attempts.
  • Emotional Emphasis: Used intonation and gestures to compensate for unclear words. Example: Emphasizing “umbrella” with a smile or gesture.
• Results:
  • By the interview, Kijima spoke fluently, managing “k-row” sounds to some extent. While not fully mastered, daily conversation barriers significantly decreased.

3. Psychological Benefits

• Supportive Encouragement: Friends’ comments like “You’re doing great” or “I get it” boosted her motivation. She realized “the more I talk, the more people support me,” maintaining a proactive attitude.
• Self-Affirmation: Friends’ words, “Mariya, you haven’t changed,” reinforced her “never forget yourself” belief, sustaining her sense of identity despite speech impairment.
• Value of Trial and Error: Embracing challenges without fear of failure embodied a regret-free rehabilitation. She noted, “It’s better to try and fail than regret not trying.”

Medical and Linguistic Analysis

Kijima’s speech practice aligns partially with speech-language therapy principles while showcasing unique innovations.

• Principles of Dysarthria Rehabilitation:
  • Progressive Approach: Typically starts with simple sounds (vowels) before complex ones (consonants like “k”). Kijima bypassed this, beginning with real conversations, yet succeeded.
  • Feedback: Objective external evaluation is crucial. Kijima’s friends’ candid feedback served this role.
  • Neuroplasticity: The brain can learn new speech patterns through repetition. Kijima’s trials adapted her brain to new uses of her remaining tongue.
• Kijima’s Uniqueness:
  • Unlike the hospital’s “safe environment,” she chose the “real-world complexity” of social settings, training intonation and nonverbal cues (gestures, expressions) alongside speech.
  • Her rephrasing strategy mirrors speech therapy’s “compensatory strategies” (using alternative methods to offset lost functions), like compensating for limited tongue movement with context or intonation.

Specific Episodes and Outcomes

• Episode 1: Friend Feedback:
  • Asking, “Need an umbrella?” a friend responded, “Huh, what?” Rearticulating “ka-sa” slowly led to “Got it!” This “k-row” practice milestone built confidence.
• Episode 2: Phone Challenge:
  • Initially scared to talk on the phone post-surgery, encouragement like “Take it slow” prompted practicing short phrases (e.g., “I don’t have clothes to wear”). Though “k-row” was unclear, context conveyed meaning, fostering achievement.
• Outcomes:
  • Post-surgery in January 2015, she had “uncontrollable drooling and near-inability to speak.” By the interview (years later), she achieved daily conversational ability. “K-row” remained imperfect but understandable.
  • Example: In the interview, she clearly explained, “K-row is tough, but I’m managing,” effectively communicating.

Why It Succeeded

Kijima’s speech practice succeeded due to:

1. Initiative: She designed practice aligned with her goal (esthetician return) rather than relying on hospital rehab.
2. Practical Setting: Conversations with laypeople mirrored real communication complexities, surpassing hospital simulations.
3. Trial and Error: Fearlessly testing rephrasing and intonation, she accumulated successes.
4. Social Support: Friends’ encouragement and “you haven’t changed” affirmations sustained self-esteem.
5. Clear Goal: Her esthetician return motivated persistent effort.

Medical Considerations and Future Challenges

• Limitations: Removing three-quarters of the tongue makes full articulation recovery challenging. Sounds like “k-row” or “r-row” require subtle tongue movements, making complete clarity difficult.
• Future Challenges:
  • Muscle Strengthening: Continue exercises (e.g., sucking through a straw) to build tongue and oral muscle strength.
  • Reintroducing Therapy: Incorporate targeted SLT guidance for “k-row” refinement.
  • Technology Use: Consider speech-assist devices (e.g., voice amplifiers) or apps.
• Risks: Overexertion may strain the tongue, risking inflammation or pain. Adequate rest is essential.

Conclusion

Mariya Kijima’s approach—“finding hospital rehabilitation ineffective and practicing speech, especially ‘k-row,’ through laypeople conversations”—demonstrates a proactive, practical overcoming of speech impairment post-tongue cancer subtotal glossectomy. The hospital’s standard rehab didn’t meet her social reintegration goals, so she leveraged friends’ feedback and rephrasing strategies to significantly improve “k-row” and other speech. This aligns with speech therapy principles (feedback, compensation) while her “real-world challenge” drove success. Her pursuit of returning as an esthetician embodies the “never forget yourself” ethos of her tongue cancer journey, inspiring hope for others battling illness.