Hello!
I am a new member and I have never been in a forum or "Chat" room, but now is the time. My Dad was diagnosed with oral cancer in the Fall of 2002. He was told it was fully treatable and a slow moving cancer. He had radiation treatments and finished the day after Christmas. He had surgury to remove the tumor(which was in the muscle of his jaw and part of his gum and inside of his cheek. Also in one lymph node.)It was rough with a feeding tube for three weeks and he started using a therabite to stretch the muscle in his mouth so he could open his mouth and chew again. Exactly one month after the surgury he became swollen and spiked a high fever and we rushed him to Charlottesville to the University of Va. hospital (where his doctors are located and where he previously had surgery). He had a infection maybe in his salavia glands (they really don't know for sure).
Anyway with IV antibiotics he came home in one week. THen after the swelling went down he noticed a small knot in the inside of his cheek. My mom thought it was scar tissue but my Dad knew better. He went straight to his surgeon and he and his team all felt like it was another tumor and sent part of it off to the lab. In two days it came back positive(on Wed.) and by Saturday it had grown to about the size of a small egg inside of his mouth. He Saw his surgeon and was told he had to have another CT scan and surgery. He went for CT on Tues. and surgery was sched. for Fri. The surgeon said that he basically was going to remove half of my Dad's face and neck. He said it would be drastic but he wanted to out smart the cancer. He would have to have a flap surgery on his cheek and lots of skin graphs. They thought it would work but (with tears in his eyes) he told my Dad he just Didn't know for sure. The night before surgery my parents drove up and checked into the hotel( it is a four hour drive) and the surgeon came to their hotel room to tell them that the CT showed a lymph node on the other side that had the beginning signs of cancer and there was some disesed tissue underneath the spot of the first tumor. He cancelled surgery and made Dad an appt. with an oncologist (who is formally of the Mayo Clinic
). THe surgeon was not at all hopefull and we felt like the cancer had grown out of his relm of knowledge. Dad met with the oncologist the next day and he was very positive. He said he wanted to start Dad on platinum chemo. ASAP and Xeloda, which is taken by mouth. We know nothing about chemo or the Xeloda. I am trying to learn everything I can about these treatments and also this type of cancer. Can anyone help?! I would love to hear anything and some sucess stories! I know the oncologist told my Mom the
cancer was in stage 3-4 because it had just started in on lymphnode on the other side. Can anyone help? We are really scared!! He starts chemo in the morning. Please pray it works!!

Waiting and worring,
Kacy
Ps. Please excuse me for typos it is late and my typing skills need polished!

I wouldn't take the surgeons comments to mean that there is not hope. There are situations in which the surgery at this time would be too drastic, and the resulting morbidity (damage) would be an unacceptable exchange for the progress made. This is a completely logical approach. Chemotherapy, may be able to reduce the size of the tumor mass to a point which surgery is a possibility in the future. As to posting on these message boards: First I would like to welcome you to OCF, I wish it was under better circumstances, but I am glad that you have found us. Also remember that on all message boards, here and elsewhere on the web, a wide variety of people are posting. Some with personal experiences, which may or MAY NOT apply to your situation. Some are medical or dental professionals, though they seldom identify themselves as such since the liabilities of giving advice over the web to a patient you have never actually seen is a lawsuit in the making. Some are individuals who are family members of people who have been through the experience. These are all personal perspectives which are posted here, and as such, they are no substitute for sound advice from a medical professional who has seen the patient. Much of what you read are opinions and not necessarily facts that apply to you. For instance, while well informed, and a survivor of this cancer, I am not a doctor, and I only am speculating on the situation that you have described. So read it all with a grain of salt. Take to heart ( and to your doctors) ideas and comments that ring true to you for their opinions. Having said all that, there has been some very helpful information exchanged on these boards, and for sure, there is a ton of emotional support posted which we all need when we go through times like these. I

Hi Kacy,

I'm not going to go into a lot of detail, because I've done that too many times before and I'm sure everyone is tired of hearing it. But, my daughter's case is somewhat similar to your dad's. She was diagnosed in August 2002 with stage 4 tongue cancer. She had surgery, then radiation. She now has a recurrence and her surgeon has said he won't operate because the tumor is too large and growing too fast. It would be "heroic surgery" because she would be terribly disfigured and he probably couldn't get all the cancer anyway, at least not with clean margins. So she will be doing chemo.

The good news (if anything about this is good) is that since the tumor is growing fast, the chemo would have a relatively good shot of getting it. Chemo targets fast growing cells which is why it is not generally recommended for oral cancer except in tandem with radiation. It sounds like your dad's tumor is also growing fast, so chemo makes sense. Hope this helps a little. Hang in there.

Rainbows & hugs,
Rosie

Brian and Rosie,

Thank you for your information and words of encouragement. I really enjoy this forum. Brian, your story is very encouraging and informative. Rosie, I am your daughters age and my thoughts and prayers are with you and your daughter.

Sincerly,
Kacy

Rosie.......Just so you know, I don't think anyone on this board "tires" of hearing about Heather. In fact,I'm thinking it is quite the opposit; I look forward to any new news regarding Heather and I'm glad we're all here ready, willing and able to help you get through this difficult time in both your lives. We care, Rosie. Hang in there and keep hope alive! Sincerely, Donna

Rosie, I totally agree with Donna 100% - we are not tired by ane means of hearing how Heather is doing, in fact - one of the prime purposes of a forum like this to be of support to others in trying times, cheer with each other when good news comes along and share grief when there is a loss. I hope and pray that Heather is doing better, and please let us know he she is doing. We want to know and yes - we do care! Best wishes always.