Metastatic Adenoid Cystic Carcinoma (ACC) Diagnosis
This is the story of my sixty-nine-year-old father, Chirayil V. Francis, who was diagnosed with Adenoid Cystic Carcinoma. It all started when he had a swollen gum that he showed to his dentist. On the first visit, the dentist said that it was probably an issue with the tooth and duly removed it. However, the Pain did not go away even after a month, and he revisited the dentist. This time, the dentist noticed a growth in the sinus (left side of his nose). He asked my father to consult with a specialist in Otolaryngology.
During the check-up, the Otolaryngologist found significant growth in the sinus, and my father had to go for a CT scan to know the extent of the development. All this happened when my dad was on the verge of retirement in February 2017. He was an IT professional consulting for the Federal government of the USA. He had planned to shift to India after retirement. The reports indicated that a tumor had spread across his cheekbone, and Surgery was necessary.
The looming question was whether the tumor was malignant or benign. To our initial relief, it was deemed to be benign, which means not cancerous. But the doctor suspected that it was malignant because of its aggressive growth and recommended another test. Unfortunately, the tumor was indeed malignant and it became clear that he had Metastatic Adenoid Cystic Carcinoma. A Surgery was imminent as the tumor was pressing against his facial nerves, and he began to lose sensation in the upper lip area.
Metastatic Adenoid Cystic Carcinoma Treatment
Our family was shocked because my father was a physically fit man. And we could not accept the fact that it could happen to him. The hospital scheduled his Surgery in mid- April. It was a 13-hour long Surgery. The Surgery was considered successful with removing the tumor, but he lost sensation partially around his left side of the face. It was a harrowing experience for him adjusting to this physical change. Within a week, he was discharged from the hospital, and we bought him home. He was back in his jolly mood, which gave us the emotional strength to support him.
Metastatic Adenoid Cystic Carcinoma Relapse
The initial days after the surgery, my father could not use the left side of his mouth. He could not chew properly, and his diet consisted of fluids. He was not allowed to swallow anything since the mouth and neck muscles needed time to recover after Surgery. One month after the surgery, we followed up with the surgeon with new CT scan reports. The tumor was back, and the surgeon clearly stated that there was no use in trying to remove this tumor.
It had spread to the skull area, and it was impossible to completely take it out of him. While we were taken aback by this update, my father was not among the patients who quit early. We were scheduled to meet a radiation oncologist on the same day. I told him that the surgeon had suggested leaving the tumor alone and requested his medical advice. He said that the cancer could not be cured entirely, but we could prolong my father's life using radiation.
My father agreed to the extensive radiation treatment plan, and then every day, we made a 3-hour round-trip to the hospital to get his Radiation therapy done. During his radiation therapy, I would work on my laptop outside or steal some time for work between the hospital journey. My employers supported me throughout his treatment, and because of their generosity and support, I was able to continue working. The doctors suggested another scan after a month of Radiation therapy. He said that as long as the tumor does not spread to other parts of the body, there would be better chances of prolonging his lifespan.
Unfortunately, in the next scan, some new cancerous spots were discovered in my father's spine. The doctor contended that this was a rare and aggressive type of cancer with no available medication. Since the cancer had spread to his bones, the doctor recommended administering an oral medication generally prescribed for bone cancer, which could help to some extent. To reduce the medicine's side effects, we consulted a dietician to ensure appropriate nutrition intake.
Life with Bone Cancer
By November, our lives had adjusted to the new normal. Our house in India was being constructed at a good pace, where my father had decided to stay after retirement. However, I persuaded him to stay with me to take care of him. My father started working remotely and dropping kids to school and karate classes. I did not stop him because these activities could keep himself distracted and optimistic. Meanwhile, he lost weight and complained about Pain in the hip area, which probably indicated the spread of cancer in that area.
One day in December, he suddenly collapsed in the bedroom and fractured his hip. We rushed him to the nearest hospital, where they managed his Pain and took care of him for a day. The following day, they told us to take him to the hospital where his Cancer Treatment was going on. At that point, I was disheartened by the proceedings and felt that our best efforts were going in vain. My father was transferred to his primary hospital, and he underwent radiation treatment while receiving care for the hip fracture. The Pain he was going through was immense, but he took it all in stride. Before Christmas, he was back home.
A Peaceful End
Annually, we have a tradition of four or five families joining us to celebrate Christmas, but we did not plan anything this time. We were quite busy, but our friends came over to cheer us up. Seeing the guests, my father was his cheerful self, and we had a good time that day.
After Christmas, we consulted with a chemotherapist who said that there was nothing more to be done from a treatment perspective. My father asked the chemotherapist to continue the treatment, which, in his mind, was a better approach than simply giving up. However, after just one Chemotherapy session in early January 2018, the chemotherapist said he couldn't undergo any more Chemotherapy sessions as his immunity level had fallen much below the desired rate. One week later, he had a fever, and we took him to the hospital. He was diagnosed with pneumonia and admitted for treatment. My mother visited the hospital for the first time since the surgery, and spent the day with my father, tending to all his needs.
He was thrilled as my mother had brought some home-made food which he was yearning for. That night, he had some breathing problems and had to be put on ventilator support. The doctors told me that his heartbeat was twice as fast and that he might have a cardiac arrest that night. They recommended putting him on hospice care, which is designed to give people supportive care in the final phase of a terminal illness and focus on comfort and quality of life rather than cure. They stated that my father's lungs were damaged by pneumonia, and his body would not respond to any more therapy.
We had my father's approval for hospice care, and the doctors stopped all treatments. My mother and I spent time at his bedside, and he died in his sleep two days later.
His last wish was to be buried in his hometown in India. We brought his body to India, and we kept him in his house, which was under construction. He could not see his dream home, but it was the least we could do for him. The following day, we buried him in his hometown church's cemetery, where he grew up.