Arvind,

I haven't kept up with the responses on this site because my sister has been back in the hospital again this week. Anyways, I can briefly tell you what choices she made and the outcomes. Her cancer was found early on the left side of her tongue. It's a site that her dentist and she (my sister is a dental hygienist) had been watching closely for changes. She had less than 25% of her tongue removed in two surgeries, first surgery biopsy showed squamous cells, so surgeon went in again to make sure he got it all. He wanted to take some salivary glands and lymph nodes too, but my sister thought he was being too aggressive. About 6 months later she discovered a swelling in her neck and then had a partial neck dissection, instead of the radical that was recommended, and declined the recommended radiation. Margins were clean and she felt she had this beat. She is a non smoker and light drinker, was extremely healthy and physically fit. Into homeopathic health, acupuncture and open to Eastern health approaches. We think the radiated iodine she had to ingest 10 years ago for Graves disease may have lead to this, not really sure. Anyways the cancer returned to more salivary glands and lymph nodes and she had a radical neck dissection and declined the radiation once again....borders were clean, and lymph node was enclosed, even though the surgeon took out a mass the size of his fist from her neck. She recovered quite well, had some loss of movement in her shoulder, but was able to climb Yosemite Falls. Then about 3 months later she started having extreme pain and seizures and a large tumor was found wrapped around the carotid artery in her neck. Surgery was not an option, 7 weeks of IMRT and chemo (cisplatin) are what she underwent. All along she had not wanted to do the radiation and chemo because of all the serious after effects (dry mouth, some loss of taste, ect...., but had no choice at this point.
I would recommend your mother get a PEG tube, nutrition is very important when one is undergoing this treatment.

Your mom will be fine, they found it early and she is doing what the doctors are recommending. The mask is extremely tight and uncomfortable, it was for my sister. She had to take morphine and ativan before each treatment in order to tolerate it, but she also had all the scar tissue from the 2 surgeries to the neck area and the tumor on her carotid artery, your mother will not have those issues to deal with. Try to keep her spirits up and give her your love and support as you are doing now. Be strong, she will be fine.

Nancy