Posted By: Kaber got info - 06-24-2004 10:41 AM
I finally got some info from my Friend on her husband. She doesn't know what stage or the size or anything. Will they be told that when they get the results from the removed nodes?

Here is what she emailed me with.

DONT REALLY KNOW AS MUCH AS YOU PROBABLY THINK.
ILL START AT THE BEGINING - MAYBE YOU HAVE HEARD THIS BEFORE BUT IT WILL BE THERAPUTIC I THINK FOR ME TO WRITE THIS.......
HE GOT A SMALL ( PENCIL ERASER ) SPOT ON HIS TONUGE ( IF YOU GO TO GOOGLE & TYPE IN ORAL CANCER GRAPHIC PICTURES YOU WILL SEE EXACTLY WHAT IT LOOKS LIKE ON PAGE ONE ) ANYHOW HE WENT TO THE DENTIST ONLY B/C IT WAS TENDER & MSDE EATING DIFFICULT. THE DENTIST SAID IT LOOKED LIKE A CALCIUM DEPOSIT BUT IT WOULD HAVE TO BE REMOVED BY A ORAL SURGEON - HE WENT TO A ORAL SURGEON WHO ON THE FIRST VISIT GOT OUT HIS DIGITAL CAMERA & ASKED CRAIG IF HE COULD TAKE A PICTURE FOR RESEARCH & STUDY. ( THAT WAS OUR FIRST REAL CLUE THAT IT MIGHT BE SOMETHING OTHER THAN A "CALCIUM DEPOSIT" ) BY THE WAY - IF YOU READ ABOUT CALCIUM DEPOSITS IT DID SOUND LIKE IT COULD POSS BE ONE, THEY USUALLY FORM ON MUSCLES ( THE TONUGE IS DEFINATELY A MUSCLE ) & TEHY ARE SORE. ANYHOW....
THE ORAL SURGEON SAID COME IN NEXT WEEK FOR THE RESULTS, NOTE* NOT I WILL CALL YOU OR CALL ME OR ANYTHIGN JUST COME IN FOR YOUR RESULTS. WE BOTH WENT IN & THE RESULTS WERE NOT IN YET BUT HE SAID I BELIEVE THIS TO BE SQUAMUS CELL CARCINOMA & THAT IS ALL I REMEMBER ABOUT THAT DAY - A FEW DAYS LATER THE RESULTS DID COME IN & HE CALLED TO SAY " WHAT I SUSPECTED IS TRUE" HE REFERED HIM TO A HEAD & NECK SURGEON IN KETTERING BUT I REMEMBERED WHAT YOU SAID ABOUT FIND A GOOD DOCTOR SO WE ASKED IF WE COULD GO TO A SPECIFIC CANCER PLACE & THEN WE CALLED THE JAMES CENTER. THEY INITIALLY SCHEDULED OUR FIRST VIST FOR MID JUNE, I SAID I DIDNT WANT TO WSIT & IF THERE WERE ANY OPENEINGS PLEASE CALL SOONER.
2 DAYS LATER WE GOT A CALL, A MESSAGE LEFT ON THE MACHINE THAT SAID "MEET DR. SCHULLER BY THE FISH TANK SATURDAY MORNING AT 7 A.M ) WHEN WE GO THERE - THE OFFICE WAS PRETTY MUCH CLOSED SO THEY COULDNT DO TEH CAT SCAN & BLOOD WORK ETC THEY NEEDED TO DO. WE MET W/ THE DOC, HE DID A PHYSICAL & SAID .........BASED ON HIS FINDINGS HE BELIEVES IT TO BE STAGE 1 HOWEVER SOMETIMES THESE CANCERS BEHAVE AS STAGE 4 SO WE WILL NEED TO CHECK THE NODES. HE HAD APPT AFTER THAT FOR CAT SCANS, PYSICALS, BLOOD WORK, EKGS, XRAYS ETC... & HE HAD SURGERY ON THE 15TH. THEY DID THE NECK THING & REMOVED PART OF HIS TONGUE.
HE WILL HAVE SPEECH THERAPY BUT IT HAS ONLY BEEN A WEEK & A COUPLE OF DAYS & HE STILL NEEDS TO JUST HEAL A BIT. RIGHT NOW HE CANT EVEN EAT REAL WELL - HE IS ON EXTREME LIQUIDS MEANING I MADE CREAM OF MUSHROOM SOUP & HAD TO DRAIN IT B/C HE COULDNT TOLERATE THE MUSHROOMS. BOOST, ENSURE, THINGS LIKE THAT.

Today was the first day she really talked about anything.
Posted By: Uptown Re: got info - 06-24-2004 11:12 AM
It sounds like she is pretty well informed but still in a daze. I would also assume radiation/chemo is the next course of action. Your friend will be needing a lot of support because it will most likely get a bit rougher in the near future and stay that way for a bit. I wonder if they have put in a PEG or a central access line of some type.

Ed
Posted By: Kaber Re: got info - 06-24-2004 11:29 AM
what is a PEG? Like a feeding tube or a Trach?

and, while I'm asking too many questions... what is a 'met'? (in some of the siggy lines)
Posted By: Cathy G Re: got info - 06-24-2004 01:21 PM
Kimberly,

You're not asking too many questions -- there's a whole vocabulary that goes with cancer that most people don't learn much about until it's forced on them. (In the Other Resources section on this site, there is a link to a Cancer Dictionary with a lot of useful information on terminology.)

"Met" is short for metastasis, which refers to the spreading of cancer from the original tumor site to other locations in the body. Since this type of cancer has a tendency to spread to surrounding nodes, the doctors will have to use the results from the removed nodes to help them determine the characteristics of this tumor and whether to proceed with radiation.

A PEG is a type of feeding tube that can stay in for an extended period of time if a patient is unable to get enough nutrition by mouth. It's not necessary in every case, but in some instances it's the only realistic alternative.

It sounds like your friend is trying to focus on nutrition, which is good, because it's so difficult to eat during this recovery phase, and if it turns out he needs radiation, eating will continue to be a problem. There should be a nutritionist at their hospital that can help monitor his weight and dietary needs.

Cathy
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