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| Date Entered at Shared Experience: 04/09/2002 |
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MOUTH |
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In 1995, at age 23, I went to an ENT complaining about a sore on my tongue. Over the course of the next two years I went back to the same doctor 4-5 times complaining about my tongue. I did not smoke at all (I have a tobacco allergy, actually) and drank alcohol only in moderation. As there were no risk factors, the doctor attributed the sore to a variety causes, including a virus, a fungus and a pesky tooth. Finally, in 1995, I pointed the sore out to my dentist. He immediately recommended a biopsy which was performed by the (now infamous) ENT. During the biopsy he noted cavalierly noted that the sore was definitely not cancer and that my dentist was probably just "looking for some excitement". Well,the results of the biopsy showed that the sore was in fact squamous cell carcinoma. It was very small, but cancer nonetheless. The ENT was shocked and even called me at home to apologize. I was, understandably, quite upset with him.
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Needless to say I did not return to my original ENT for treatment! My dentist is a graduate of UCSF, so he recommended treatement from their Cancer Center. I live in Reno, Nevada, which is approximately 3.5 hours from San Francisco. I immediately made an appointment to be seen by the Tumor Board of the Head & Neck Surgery division of the UCSF Caner Center. A tumor board allows a variety of doctors, from different specialties relating to cancer and the head/neck area, to meet me and inspect the tumor. The doctors then collectively discuss the patient and reach a treatment recommendation.
Meanwhile I had a PET scan and an MRI done to determine if the cancer had spread anywhere else in my body. The results showed that the cancer was, seemingly, localized in the tumor of my left lateral tongue.
The Tumor Board recommended removal of the tumor from the tongue and a "radical disection" (removal of the lymph nodes) of my left neck. The neck disection was recommended as a precautionary measure. The board was split on radiation. Some felt it was warranted to be absolutely certain the cancer is treated and others wanted to save radiation as a future option in case the cancer ever came back.
I elected to have the full surgery (removal of the tumor plus the neck disection) and save the raditation for future use (if needed).
The surgery was performed by UCSF's Dr. Michael Kaplan.
I was in the hopsital for five days after the surgery. I was fed by a stomach tube through my nose for the first three days. I had staples in my neck. There were drainage tubes coming out of my neck with sacks accumulating a red goo. I felt miserable and looked pretty dramatic, as my family can attest.
After four days of misery, I suddenly felt a lot better. I was able to eat soft foods such as pudding and yogurt. I started walking around the hospital halls and, finally, personally attending to my bodily needs! I was ready to head home. |
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Initially, after the surgery, I took it easy and stayed around the house. My tongue was still swollen, so I talked a bit funny. My diet was limited to soft foods. My weight went from 155lbs. to 140lbs.
After two months my life pretty much returned to normal. The left side of my face was (very) slightly swollen and would stay so for about a year.
I see an ENT in Reno about every six months and make a trip to UCSF every six months. I receive a PET scan at UCSF once a year to check on everything. This will probably be a lifelong routine.
It has now been almost five years and everything is great. There have been a couple of scares, but the one biopsy I had came back negative. Everytime a sore lingers in my mouth for more than a couple of days, I hit the panic button. I am sure this is quite normal. I suppose it is better to be overly cautious than not cautious enough.
I live a normal life. I eat whatever I want. I still do not smoke. I still drink socially, although I am very conscious to keep this in extreme moderation as this is definitely a risk factor. Immediately after my surgery, I read a lot about diet and how to live a "cancer victim" lifestyle. While I would consider my lifestyle "healthy", I don't eat green algea or anything weird like that. I eat a balanced diet and pay attention to my health with regular excercise, etc. So far this has worked just fine. |
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UCSF Cancer Library + Internet |
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My treatment was pretty radical for one small tumor. This was due to the fact that I was only 25 years old with no obvious risk factors.
If I had stayed in Reno, my treatment would probably have been limited to cutting a small piece of my tongue out, which probably would have been sufficient.
UCSF gave me outstanding treatment and I would recommend Dr. Michael Kaplan to anyone on the west coast in need of treatment for head/neck cancer. Dealing with cancer is very stressful. I found that putting my treatment in the hands of an otolaryngologist who is a department head at a leading medical school to be reassuring.
By the way, I did file a formal complaint with the Nevada Board of Medical Examiners against the original ENT. My complaint was dismissed.
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