Note: Some important points are highlighted in red
Avinash Raina was a twenty-two year bright young individual whose life was cut short by the awful disease known as Cancer. Avi was diagnosed with squamous cell carcinoma on May 19th2000 and he passed away on 19th November 2001.
He lived exactly one and a half years after diagnosis of squamous cell carcinoma of the left lateral border of the oral tongue. He had a very normal happy life until February 2000, when he developed sore throat with very vague mouth symptoms. He used to have recurrent aphthous ulcers of the mouth, which were attributed to be normal college related stress. These ulcers were not probably related to the final diagnosis. Avi visited the ENT specialist two months before the actual diagnosis and he did not notice any serious problem. He recommended tonsillectomy as a permanent solution to frequent sore throat. Avi tried to manage sore throat and ulcers by getting treatment from the college clinic and on the counter medicines, with the hope to get tonsillectomy done after the final examination. In fact the appointment was also made to perform tonsillectomy during his summer break. The disease was so aggressive that he found a lump himself on the side of his tongue before the final exams. The lump had an ulceration, which caused pain with eating. He also had regular dental check-up six months before diagnosis and nothing was noticed that time also. The visual examination of the lump showed signs of disease and the same was confirmed by performing biopsy.
Multiple opinions were obtained and everyone advised surgery on the left side of the tongue to remove the tumor. The opinion of the doctors varied on how much additional part of free tissue outside the tumor should be removed to avoid the risk of reoccurrence. The question of speech impediment was weighing on their minds for making the decision so a plastic surgeon also was consulted prior to surgery for possible reconstructive surgery of the tongue, which in his case was not required. He had local excision of the lump in the tongue and the surgeon was able to remove enough tumor free tissue outside the lesion without performing radical surgery on the tongue.
The first surgery was done on JUNE 2000 and the diagnosis was confirmed as squamous cell carcinoma. MRI scan prior to the surgery revealed some lymph nodes on both sides, more on the opposite which were considered normal by his treating physician because the size was small. PET scan revealed only activity in the tumor of the tongue. He had limited neck dissection”(supraomohyoid)” on the left side of the neck, which was on the same side where the tumor was documented in the tongue.
Lymph node dissection on the left side revealed three positive nodes with microscopic involvement despite negative MRI, PET scan and negative clinical examination. No dissection was thought to be necessary on the right side thinking the tumor is on the left side of the tongue although MRI did reveal some small nodes. These nodes were thought to be, probably normal, as PET scan was negative.
The bilateral radiation of the neck in association with chemotherapy was started six weeks after the surgery. He received a full tolerable does of radiation on the left side of the neck. He also received less dose (prophylactic dose) on the opposite side, on the assumption that tumor was on the left side of the tongue .it was assumed by the treating physician that possibility of right side lymph node involvement was less based on negative PET scan, despite MRI showing small nodes which were supposed to be normal. In fact first recurrence was noticed on the right side only four months after completion of the treatment, which indicated to us that he had residual disease on the right side and giving only prophylactic dose on right side might have jeopardized his chances of cure. In addition to radiation chemotherapy (Cisplatin) was also given. The side effects of radiation in combination with chemotherapy (Cisplatin) were tremendous to the extent that second dose of chemotherapy could not be administered. The second reduced dose of Cisplatin was given only at the end of radiation, which probably did not help.
His first MRI four months after completing therapy revealed one node on the opposite side, which was thought to be very nonspecific. Two months later three more nodes were visualized on MRI scan. These nodes were located on the right side although the tumor removed was on the left side. The university specialist advised observation only. No further tests were ordered at that time and Avi was even advised to finish his semester.
A second opinion at a different institution raised serious concerns hence a CT guided biopsy was done and revealed recurrence on the opposite side. He underwent radial neck surgery on the right side and disease was much more widespread than we had ever imagined. CT scan had revealed an area of necrosis prior to surgery, which was not obvious on MRI. We concluded that it was helpful to do a CT scan in addition to MRI, particularly as the findings on MRI were not very clear as far as the extent of the spread was concerned.
Multiple opinions were obtained after the second surgery. Repeat radiation with low dose chemo was given which was extremely hard again for him to handle due to the significant side effects. Disease recurred one month after the second surgery continued to manifest for the next six months. Although there was not distant spread but the local spread in the neck and base of the skull made his breathing very hard. No metabolic abnormalities were detected. His nutrition was kept all along with PEG stomach tube. He had no weight loss except loss of hair due to chemotherapy.
As a last resort we evaluated various experimental drugs being used for Squamous cell Carcinoma. Chemotherapy in association with an experimental drug (EGFR blocker) was the next best option. The new experimental drug (EGFR blocker) was administered for two months, yielding no major results.
Pain management became the top priority for both doctors and family, as persistent pain in the last months was unbearable. None of pain control regiment used was effective. In the end, high dose Morphine had to be administered to keep him comfortable.
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The thoughts and suggestions above are based on our experience and the pattern of disease can vary from person to person. Our experience does not constitute by any mean standard of treatment. Your treating physician has extensive experience and his treatment plan should be followed keeping in consideration some of our experiences.