PATIENT STORY—Laryngeal Cancer, Mumbai

Tell us something about yourself and your family.

I am P. K. Lahiri, an ex-employee of Department of Atomic Energy, living in Mumbai with my wife for the last 50 years. I have two children. I impart esophageal speech training to people who have had their larynx (voice box) removed. I am 77 years old.

What were the first signs that made you suspect that something was wrong with you. What was your age then?

Hoarseness or change in my voice was the first sign that I noticed. Although many other things can cause a hoarse voice, in my case, the diagnosis revealed cancer of the larynx (laryngeal cancer). I was 50 years old then.

 

Tell us about your journey through diagnosis and treatment. What were your feelings? Who helped you in this journey, especially in diagnosis and to reach the correct doctor/center for treatment? Were finances an issue? How was that managed?

I was told that my life could be saved at the cost of my vocal system. The choice was obvious. I agreed to sacrifice my voice for my life and so my larynx (voice box) was surgically removed. I became totally mute and unable to speak after the operation.

Even though, I felt demoralized and remained traumatized for some time imagining leading my life ahead as a dumb man, I did not give up hope. As per the advice of one of the specialists that I was consulting at that time, I started using my esophagus as vocal medium by practising for hours to create sound. Eventually one day, I heard a sound created by me through the esophagus. Gradually, I started speaking and joining mainstream society again.

Later, I went to Tokyo for a 3-month long Instructor’s Course on Esophageal Speech Training conducted by the Asian Federation of Laryngectomees’ Association (AFLA), Japan. I had then and there decided to dedicate my life to helping other laryngectomy patients dealing with the trauma of losing their voice and making them gain their self-confidence again.

Finances had not been a problem as I got free treatment.

Are there any support groups, communities, or relatives who have helped you through the journey. If so, please share their contribution and contact details.

My family members and well wishers remained with me throughout and gave me all the necessary emotional and mental support so I did not require any outside help as such.

However, after going through this experience, I really wanted to help others like me. My desire of helping other laryngectomy survivors was fulfilled when Mrs Anaita Vesuvala, a breast cancer survivor herself, picked me to impart speech training at Cancer Rehabilitation Clinic (CRC) which she had established with the help of renowned onco-surgeon Dr Sultan Pradhan in Prince Aly Khan Hospital, Mumbai.

Soon I started doing laryngectomees’ rehabilitation in the society with the help of other trained survivors and qualified volunteers under PAKH, an initiative for training laryngectomy patients to vocalize and speak again through esophageal speech therapy.

Esophageal speech is a better option than the device such as electro larynx which although helps the patient vocalize, the voice it produces sounds unnatural and robotic. As the esophagus is well within the patient’s control and does not involve any cost, it can be used by anyone. The device, on the other hand, is expensive and is not affordable for everyone.

At PAKH, we have been consistently, and with sheer commitment, providing this honorary service twice a week to other laryngectomy patients for two decades now, spreading joy and happiness around. Every meet has around ten patients who get personal training and emotional counseling by our efficient volunteers trained and specialized in esophageal speech and stoma care. We have also been rendering our services, for the past ten years, to the cancer patients at Bharat Shevashram Sangha, a charitable non-governmental organization in Mumbai. Most of these patients are below poverty line. We are also associated with the Memorial Sloan Kettering Cancer Center, New York.

Are there any other associated health problems that you have to deal with?

No. It has been 27 years since my cancer surgery, but I haven’t suffered from any other associated health problem.

What treatments did you try and which one helped you the most? Where and from whom did you take it? Are you still under treatment? If yes, what and where?

The surgery was performed at Tata Memorial Hospital, Parel by Dr Ashok Mehta. It was Dr Mehta who told me that if I could belch, I would be able to speak too.

Nothing special was required after the surgery except for the follow-up visits which I did for about 20 years. Other than that, self-practice and the Instructor’s Course on Esophageal Speech Training at AFLA helped me improve my speech and be able to impart the skill to other laryngectomees.

Have you made any lifestyle/dietary changes to manage the disease/disorder? If so, of what kind?

Not really. I lead my life like any other normal man.

How did you cope up with your illness? Do you wish to give any message/advice to patients like you?

Positive thinking without the fear of the disease is what helped me cope with it at every stage of life. One should have firm faith in the treatment that the doctor is giving, and try to keep oneself happy while undergoing treatment.

In medical language, I am a dumb man as I do not have a vocal system. But here I am, communicating again without a voice box with my esophageal voice. I may sound hoarse but I am proud of my voice which I have created myself. Strong determination with an urge to live for many years is what has always kept me going.

Last but not the least, cancer is not the cancellation of life provided we do not hide the disease. Take proper treatment as early as possible from a specialist at a proper hospital.

Are you open to some other patients contacting you through us?

Yes. I have already helped more than a thousand patients in India and abroad get their voice back through esophageal speech therapy. My endeavour has empowered them to join the mainstream society again and I’ll be happy to help many more.

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