My father had some precancerous patches removed from under his tongue about 2 years ago, he recently felt something under his tongue which they removed and biopsied, this was all done by an oral surgeon. The oral surgeon told him it was cancer and has referred him to an ENT. My dad knows nothing at this point and couldn't answer any of my questions, I am also an RN so I know too much as it is. He see the ENT on July 2, my sister and I are going with him and need to know what questions to ask of the doctor. Can anyone give me a list of things that I should know that this point? I am assuming this appointment will just be to get additional testing scheduled to get a stage and care plan in place. Also, is and ENT that right person for him to be seeing? Will an oncologist be involved at some point? Any help is MUCH appreciated!!

Welcome to OCF. You will find so much info on the forum along with caring current and former patients and their caregivers. There is also the main pages of OCF that has a search engine.

Most of the general public does not know very much about oral cancer. Even in your profession Im sure you havent come across very many oral cancer patients.

Under the tab 'New Posters Read This First" there is a guide that every person on here should read. It tells you so much about oral cancer including the first doctor appointments. It has posts that are from OCF members as well. This is the best info you can get, its right from patients and their caregivers mouths.

http://www.oralcancerfoundation.org/board_images/GTI_draft.pdf

I would get him an appt with a Comprehensive Cancer Center and skip the ENT. The CCC will have Docs from all of the appropriate skill areas and will have treated more cases in a year than most single Docs see in a lifetime. With a CCC he will get a team of cancer specialists meeting him and reviewing his case in a Tumor Board setting and they collectively will decide the beast course of Tx and it will all be handled under one roof. He may very well only get one chance to kill his cancer so I would want that to be my best shot.

List of CCC's here:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

If your father is in St. Louis also and wants to stay in the area, look for posts by Nurse Ratched. Her husband was being treated at Siteman Cancer Center at WashU (it's on the list that David linked to) and I expect she would be happy to answer any questions about his care there. You can get her e-mail address (through her profile) or send a private message by clicking on her name at the left of her posts.

If I had to do it all over again, we would skip going to our local ENT and head straight for a CCC. Good luck

I agree that you should head straight for a CCC. I started out a local hospital that operates on the pretense of having a cancer center but it's not the same. I received radiation there but they had no one on staff (ENT -wise) who was familiar with oral cancer. I was lucky to have them recommend me to a CCC close to home for the rest of my treatment but I could have saved a lot of grief if I had gone there first.
Best of luck to you and yours!

Take the above advice and get to a CCC as this fight is like no other he and your family will be in, David is right on track, the CCC team is the only way to go!!! Semper-Fi Bob

Welcome to OCF, glad you found us, sorry you had to! As a medical professional you've seen or read about cancer, you can never really "know" cancer until you've lived it so it's good to take your cues from those that have traveled that road.

The resounding advice here is to get your father to a CCC...I would take that advice. As a nurse you know better then anyone that there are good Dr's and bad Dr's...all have a God Complex but some wouldn't know their ass from a hole in the ground. A normal ENT will deal with mostly ear infections and tonsilitis all day long with the occasional cancer patient...not my 1st choice in a life or death situation.

Get the best medical advice available to your father...after that the only thing that he can control is his attitude and nutrition...the rest is up to how his body responds to treatment.

Good luck

Eric

I went to a well known CCC and was ready for the 3rd surgery in 6 months when I finally went to the 1st Dr that diagnosed me with OC. He is at a CCC but not that well know natioally, but this Dr has been wanted by the bigger better known CCC'S but won't leave this area or the Hospital he is at. Boy are we glad he can say no. The well known one , I think was using me for a guinea pig because of my age. but he is good as is is team. Go for it as David says.

I have to say I know nothing about cccs. But I went to a oral surgeon who biopsied and it came back as cancer. That oral surgeon referred me to another oral surgeon. The second oral surgeon is one of the best docs in the area for oral cancer, and he doesn't work at a ccc. I was also given a ENT for my reconstructive part of the surgery, and he as well, was one of the best. They both were very knowlegable about oral cancer and were able to answer all of my questions. I have never had an oncologist through my whole treatment as of yet, and both my ent and oral surgeon met with a tumor board to decide the best path of treatment.
So sometimes you get good docs at other facilities that arent ccc's that know a lot about what your dad has. I guess it's up to you. But I wouldn't say that a ENT wont know as much as a doc from a ccc. maybe he will but maybe he won't. I got lucky i guess cuz I ended up with a oral surgeon, a ent, and a radiation oncologist that are the best in the state of minnesota, and i have yet to step foot in a ccc.