It was the month of June, hot and humid, and our outpatient department was buzzing with activity. The patients, caregivers, oncologists, social workers, nurses, and ward boys were all absorbed in their work. Things were moving like a well-oiled machine. I was talking to a patient when a young girl, accompanied by her father, approached me. She said, “The doctor has asked me to meet you for counseling.” The first thought that came to my mind was – It must be her father who has been diagnosed with cancer, as most patients in our disease management group are older. On asking, I was told that it was not the father, but rather the young girl who had been diagnosed with cancer. Her name was Suchismita Das, and she was just 21 years old.
Suchi was in her second year of engineering college when she started struggling with some health problems. One day, when she got back from college, she felt weak and feverish. She took a paracetamol and by the next morning, she was feeling better. About a week later, in the middle of the night, she woke up feeling restless and had broken into a sweat. There was a nurse in the hostel and Suchi went to see her. The nurse brushed off her symptoms, saying that she must have had a nightmare, and there was nothing wrong with her.
Suchi felt reassured, pushed the thought away, and carried on with her studies and the daily routine. About 15 – 20 days later, she started to experience difficulty in breathing while running, climbing stairs, and even while laughing. She had become breathless and excessively fatigued. She was exhausted all the time and this bothered her. She went to a local physician who prescribed some medicines, but she got no relief. Her symptoms persisted. She spoke to her father who was living in Nagpur at the time. He told her to return home. Two days later, she was in Nagpur where they consulted a family doctor who said that Suchi’s left lung was receiving less oxygen than the right. He advised some blood tests and a CT scan. The initial diagnosis was a fluid collection (pleural effusion) in her left lung. The father and daughter duo were not overly concerned because Suchi’s father had also been diagnosed with pleural effusion, which had been cured with simple medications. The physician advised removal of the fluid (pleural tapping). In Suchi’s words, “The thought of someone taking out fluid from my lungs was scary but thank God, I was under anesthesia and felt no discomfort or pain.” Approximately 1.5 – 2 L of pleural fluid was drained; the study of which showed no abnormality. During the process, the interventional radiologist also noticed some thermocol-like balls (as told to Suchi) in the lungs which were sent for biopsy. When the histopathology report was ready, the family doctor advised them to meet a senior pulmonologist in the city who told them to go to a bigger facility or a cancer hospital for treatment. He said that he was not aware of the type or the stage of the malignancy.
Quoting Suchi, “That was the worst day of my life. Both my Baba (she calls her father “Baba”) and I cried a lot. We were very scared as I had lost my mother to gall bladder cancer. Cancer had come back to haunt our lives again. However, we pulled ourselves together and prepared to move to Mumbai, believing that my Baba and I together will be able to fight and overcome this disease. But to be honest, I was upset and felt cheated because people my age go to Mumbai to experience the glamour and the excitement, but I was going there for cancer treatment. When we reached Mumbai, the first thing that we did was eat the famous ‘Jumbo Vada pav’*. I wanted to reach the hospital feeling positive. We finally reached the most famous cancer hospital in the country. That was a day I will never forget -6th of June, 2019.”
They first met a surgical oncologist who told them that the tumor was not resectable, and hence, surgery was ruled out. They, then, consulted the medical oncologist. After re-evaluation of the blocks and the slides, Suchi was diagnosed with a rare aggressive tumor called alveolar rhabdomyosarcoma. The chemotherapy protocol advised was VAC (vincristine, dactinomycin [actinomycin-D], and cyclophosphamide) plus IE (ifosfamide and etoposide).
She was admitted for a day to receive the first cycle of VAC. She experienced side effects like nausea, constipation, and vomiting, and was sleeping for almost 15 h a day. Ten days after the first cycle, Suchi felt much better. The coughing and breathlessness had reduced considerably. Twenty-one days after the first chemo cycle, Suchi was given the next cycle, which was the IE regimen given over 5 days. This time around, she had severe side effects. She fainted and had to be admitted to the hospital for supportive care. Suchi shared with me that her father was very scared, but the hospital staff was extremely supportive and helped them to get through that difficult time. By then, Suchi had lost all her hair. This affected her emotionally and she cried a lot, but the gutsy girl picked herself back up, and bought many colorful scarves to cover her scalp. After the second cycle of VAC, she developed a foot drop on the left side due to the vincristine chemotherapy. Vincristine was removed from her chemotherapy protocol. She successfully completed the third and fourth chemotherapy cycles. Every 5-day cycle was followed by 5 – 6 days of grafeel injections, which helped improve her white blood cell count. She had to be given two bottles of blood after the sixth cycle, as her hemoglobin level had dropped to 7 g/dL. For the foot drop, she consulted a physiotherapist. Exercises helped and she was advised to wear special shoes.
After four cycles of chemotherapy, she underwent a positron emission tomography (PET) scan. This showed a considerable reduction in the size of the lung nodules. She was referred to the radiation oncologist. The plan was to give her chemoradiation. She underwent 28 fractions of radiation along with the remaining chemotherapy cycles.
Suchi was scared of radiation; she feared that the huge machine would eat her up but gradually she realized that it was easier than chemotherapy. The completion of her radiation coincided with the completion of her tenth cycle of chemotherapy; she had been advised to take a total of 16 cycles. She talked of how the eleventh cycle was one of the most difficult times because it was on the 1st of January 2020. While the world was busy celebrating New Year’s Day, she was in hospital receiving chemotherapy. She reminisced with a pained expression, “People say that one gets used to going through chemotherapy, but no one can get used to chemotherapy. Chemotherapy ravages the body and the scars remain forever; the pain still feels fresh.”
Finally, in April 2020, the day arrived when all her 16 chemotherapy cycles were over. The PET scan showed no sign of the disease. Suchi and her Baba were very happy and believed that the worst was behind them. This was the time when the first wave of the COVID-19 pandemic was at its peak, and unfortunately, they could not go back to Pune where she was studying engineering. But as things settled, Suchi and her father moved back to Pune, and she resumed her classes online. Every 3 months, they would return to the hospital for follow-up and everything seemed to be going all right. A year later, at one of her follow-ups, the PET scan picked up a recurrence. Suchi and her father were devastated; the disease had come back, and she would have to go through the treatment again. Her Baba said, “ She was reluctant to take treatment but after a lot of persuasion, she agreed to go through with it.”
This time, the chemotherapy protocol consisted of a total of 16 cycles, including 4 cycles of topotecan and cyclophosphamide administered over 5 days and 12 single-day cycles of dactinomycin and cyclophosphamide. She went through days of immense fatigue, low white blood cell count, loss of appetite, and low hemoglobin, just like she had experienced the first time around. Her last chemotherapy was in April 2022.
She went through the treatment with positivity, courage, will power, and the love and support of her Baba. In spite of all the challenges, Suchismita completed her engineering as well. Her recent PET scan revealed no trace of the disease.
She believes in destiny and says that each one of us has a battle to fight. During the treatment, one of the oncologists told her that a positive attitude helps the medicines work better and she believes that this is true. Suchi says, “I am grateful to God for always helping me through difficult situations. I also want to seek blessings from everyone so that I can now lead a normal life.”
(*Jumbo Vada pav: A traditional Maharashtrian vegetarian fast-food dish, consisting of a deep-fried potato patty in a bread bun, served with sauces and hot peppers)
About the patient – Suchismita Das
Suchismita is fondly addressed as Suchi by all. She is a young girl full of dreams. A bundle of energy, positivity, and love. She completed her engineering during the course of the treatment. She was 15 years old when her mother succumbed to gall bladder cancer. She is very close to her father, whom she calls ‘Baba.’ Each derives strength from the other. Together, they like to sing songs. Both Suchi and her Baba sing beautifully. She seeks blessings from all and prays that cancer is now history in her life story.
About the author
Ms. Vandana Mahajan is a Palliative Care Counselor. She is associated with the Mumbai-based non-governmental organization, Cope with Cancer-Madat Trust. She works as a volunteer counselor in the thoracic disease management group at the Tata Memorial Hospital, and also provides cancer counseling across India via online platforms. She is a cancer survivor too!
