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Submitted by Dr S. Patel on 12 December 2018
A picture of Stage 2 Oral tongue cancer survivor Amita Modi and how she fought cancer

Amita Modi, 44 from Ahmedabad, was diagnosed with Oral Tongue Cancer survivor when she was 28. Her 18 month old daughter motivated her to stay strong and positive through her cancer treatment. She still worries about her stress triggering off a relapse of cancer.

When were you diagnosed, Amita? What were the early symptoms?

In November of 2002, I noticed a small sore on my tongue. I tried some home remedies but got no results and it seemed to have grown bigger. During the December holidays, we were travelling with some friends to Rajasthan. Through the trip, it had become difficult for me to eat which had led to weight loss and low haemoglobin which was discovered on a blood test later on. After we returned home, I showed the sore to a Dentist who is a family friend. He said it looked like an ulcer and referred me to another doctor for a biopsy. The biopsy results said I had cancer. Stage 2 Oral Tongue Cancer. I was just 28 years old at the time with no history of tobacco use, pan, gutka, alcohol etc.

We found out about a renowned Oncologist and went to consult him. On seeing my biopsy report, he recommended surgery right away. Since my hemoglobin was low, I was first given a blood transfusion. On 3rd of January, I was wheeled into surgery for resection of the cancer. Along with part of the tongue, few cancerous lymph nodes from my shoulder were also removed.

Please describe your experience of managing your condition. Any complications?

Post-surgery, I was put on a liquid diet which slowly included soft food like khichdi. Luckily, I was able to take food by mouth and never required a food tube to be inserted. At the time, there was not a lot of information readily available, so I would write down all the questions I had for the hospital dietician or doctor before my visit. I found that to be very useful. After discharge, when I was home I continued my soft food diet for the next few months. One evening after dinner, my mouth had started bleeding and I realized my stitches had come open. I contacted the hospital immediately and had to be stitched up again. Other than that incident, recovery was fairly smooth.

Do you have a family history of your condition?

I know my father had colitis; it could possibly be cancer of the colon.

What was your course of treatment? What was your follow-up like?

After surgery, recovery took about 2 months in all. All my test results were clear after that, so no chemo or radiation therapy was prescribed for me. I had to do follow-up for 5 years post my surgery. For the first year, it was every month, on the 2nd year; it was very 2 months and so on. Now it is once a year!

What kind of specialists do you consult and how often?

All my treatment was done at HCG hospital in Ahmedabad. Since some lymph nodes were removed from my right neck and shoulder, I had to undergo physiotherapy for about 2 years to prevent and manage lymphedema of the right arm.

Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?

I never tried anything besides conventional treatment. I believe that Allopathy provides fast and guaranteed results that none of the alternative therapies can.

How did you mentally/emotionally cope with your condition?

It was obviously very upsetting initially; I was only 28 years at the time. When I thought of my daughter, I realized I had to fight and get out of this. Then on, I focused all my will power on getting better.

How has your family supported you? Who has been your biggest support/companion through it all?

My daughter, who was so tiny at the time has been my biggest supporter and motivator. When I had to get admitted for my surgery, I was kept in the hospital for about 5 days. I was so worried about leaving my daughter who was just 18 months old at the time. This was the first time I would be separated from her for so long. Since children are not allowed inside hospitals, my husband would bring her below my room every night so we could see each other. My room was on the 7th floor, and I would wave to her from my hospital room window. She kept me going during those difficult times.

Amita Modi with her daugher who was 18 months when Amita was diagnosed with Oral Tongue Cancer

How did your friends treat you? Did you share your experience with them soon after diagnosis?

Since we were travelling together at the time of my sore, my friends have been informed all through the way.

Is there any challenge you face?

Going for my annual cancer check-up is still quite a challenge for me. I find it daunting after the blood test and throat sonography to wait till the test results come.

What is your present condition?

I can now eat or drink everything. I have now been cancer-free for 16 years. About 6 years ago, when I finished 10 years of being cancer-free, my story was featured in a book published by the hospital. Since then, with the support of my Oncologist, a few of us survivors have started counseling patients at the hospital. My oncologist may pass on my number to a patient who requires counseling or just a chat with a survivor. Patients are more inclined to listen to us than the psychologist available at the hospital because we have been through cancer ourselves.

We are now 4-5 women who take turns visiting the hospital once a week to see patients soon after their surgery to advise them on diet etc. Gradually we have commenced a counseling session for caregivers who need the support such as much. In addition, we teach caregivers cooking tips for liquid food preparation for oral cancer patients, share simple recipes etc. Along with this, we conduct awareness campaigns at social gatherings, religious functions, in schools to teach children about tobacco.

What is your advice to patients who face oral cancer?

My advice to other patients would become mentally tough and strengthen your will power to be able to face all the hurdles that cancer may throw at you. It is essential to remember that you can survive and come out of it well.

What keeps you awake at night?

I fear that if I take on stress, it may trigger the relapse of my cancer in the future.

 

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