I am so glad to have found this site and can't tell you how much all the information has helped me in just the last hour.
My mother had a tumor on the base of her upper jaw and was told it was metastatic - her uterine sarcoma had returned after 11 years. She was told to have a maxilectomy which she did one month ago. Prior to the surgery she was fitted for an obturator and told one would be in place after surgery and another available in a week or so with the final available some months away.
I asked the surgeon if there was a chance this was new oral cancer and he said, "this is absoltely her old cancer." He said it was localized to this particular area and they would remove it. The PET scan was negative, CT scan showed something on the opposite side of her neck that was an abcess from a wisdom tooth pulled two weeks prior to surgery (according to needle biopsy of that).
After surgery the doctor said it was an unusual case in that it was so different than the primary oral cancer he works with. He said they removed the tumor, margins were clear and put in the obturator and no further treatment was necessary.
It took more than 2 weeks to get pathology report back and now the doctors said the report shows it is scc. He said they should just keep an eye on it and that we should meet with their Tumor board to find out what they think. The Tumor board consisted of this doctor, his two residents, radiation doctor and chemo doctor. we were shocked with the radiologist said my mom should have another surgery to remove more "just in case" cells still exist and follow up with radiation and the chemo doctor said she should have chemo as well.
All of this is radically different than what we were originally told. The radiation and chemo were so "hard sell" I'm hesitant to believe them - especially when all the tests show it was just in this one area. My mom will be 70 in December. does any one go against the doctors' advice and recomendations - especially when so different from one week to the next?

I am surprised that they ever thought this was a met from her uterine cancer. I am also not comfortable with a doctors who says something in the absolute, when you can only tell what kind of cancer it is from a microscopic pathology exam. This remote, and an unlikely location given other areas of more likely metastasis, I am wondering what he was thinking

Thank you for your quick response. I'm trying to find the best advice on my mother's follow up care and my best hope that some one gives me the answer I want to hear. My mother has never smoked and follwoing the surgery the doctor (who has an odd way of speaking) said if she were to go from anything it wouldn't be cancer following the surgery he had just performed. This sudden change of plans is so unexpected after recieving other information for over three months.

I like this doctor less and less, even having not met him. Perhaps she had a very early stage one cancer, he thinks he got everything, and his comment is optimistic

Susan, Please go to a cancer center, as Biran suggests, where you can get a reliable second opinion. I know how it can be to get a favorable diagnosis at first then have it followed up later with recommendations for much more serious treatment beyond surgery such as rad and chemo. The fact is I *really* did not "want to hear" that recommendation when I first heard it, espcially since not everyone on my treatment team appeared to agre with it, but I went for a second opinion from one of the top places in the country and was convinced that that recomendation was really the one I should follow to have a good chance of long term survival.

The question that really should loom largest for you and even more for your mother since this is ultimately her deicsion is how will you/she feel if the cancer comes back and she dies from it and you have NOT taken all all the steps you could now to get rid of it? The only answer I could come upm with to that question is I would feel like my fear of treatment had led me to undervaluing my life. I decided my life was valuable enough to fight through some hard treatment (which I am still fighting to recver fully from--and I'm only 47--so I do udnertsand this is serious stuff).

Welcome to this site. There are great people here who have really helped me through the whole thing, as I know they will you as well.

Nelie

I agree with all-Get a good ENT and Head and Neck ONC. I echo Brian-that previous Doc seems a bit...not experienced with this particular type of CA. Thank goodness you are on it! Good job and we will be here to support you.

Hi my mum is 41 and recently had a gruelling 14 hour operation to remove a tumour at the base of her tongue. More importantly she had a trachea fitted that caused no end of grief. Mum has had a peg fitted since the beginning of her operation. She has been home for a week and a half. Although she can swallow and eat soup! she may never eat solid food again. We are now about to embark on radiotherapy which is causing nightmares for us all. After a consultation today they said she will not be able to swallow for 12 weeks is this true !. What are the cruel harsh side effects of radiotherapy. Any one who has been through it would love some advice

anyone here to chat about the effects of radiotherapy

I am a new member also - I do not have cancer, but my husband has been through surgeries, radiation, and now is in chemo treatments. The surgeon refuses to operate anymore on him, I think because of his weakened state (down to 124 lbs from 170 lbs). His cancer started as a spot on his tongue about a year and a half ago and has continually come back (very aggressive). It traveled to his lymphnodes and they removed most of them, then to his neck, and again to his neck, and traveled to his shoulder where he had surgery and most recent it has come back to his shoulder within a month after the last surgery. It has been very hard for him. He cannot do hardly anything physical anymore, but his spirit is strong!!

Jace

Jace, I am going to copy this to a new post so that people will see it