In late 2005, my husband developed a sore in his mouth. He went to the dentist 9 times, finally he saw an oral surgeon who said it was cancer of the floor of the mouth. He had surgery in Feb 2006. They decided he didn't need radiation. We haven't missed one follow up appointment or scan. In Nov
his PET scan showed positive in his mouth, it was followed up 48hrs later with a CAT scan that showed a shadow. The Doctors didn't believe it, thought they were false positives, and said the scans would be repeated in March. He now has cancer in his mouth, neck and jaw. He is scheduled for extensive surgery to be followed by 8 weeks of radiation.They are telling me he will have a permanent abdominal feeding tube and may not be able to speak. I'm numb

PDT,


So sorry to hear off all this, you have come to the right place for support and to have some of your questions answered. You will get information from suvivors , current pts, and caregivers....when is his surgery scheduled for ? have they told you what stage , and are you going to a CCC for TX. Please keep us posted and ask as mnay questions as you need to !!! HUGS AND PRAYERS ARE BEING SENT TO YOU !

Sharlee

Whats CCC for TX? His surgery is the second week of April. There's only 1 radiation oncologist in an 80 mile radius but he's not in our insurance plan. So we're trying to get him accepted by our insurance. Everything has been via the phone-no one has told us what stageor prognosis. The original cancer was T2 N0 M0. I just don't understand how it got this bad so fast.

Welcome and so sorry to see you here. I pray that things go as well as they can for your husband.

CCC = Comprehensive Cancer Center
TX = Treatment

You may want to get a 2nd opinion from Emory in Atlanta, I'm told they are really good with head and neck cancer and are a CCC I believe.

CCC = comprehensive cancer center (a facility where physicians from a variety of specialties meet together to come up with a individualized treatment plan for each patient).

TX = treatment

There are a lot of shorthand terms used in these forums -- explanations available here .

There are people on this board who have been treated at Emory, in Atlanta -- if you do a search on Emory (search link at the top of each page), using "search in all open forums," you can find who they are and e-mail them for information. Given your husband's diagnosis, you really want a team of physicians involved in his care who consult regularly and work smoothly together.

-- Leslie

Emory is where we've been going since the beginning. It's a 4 hour round trip for us, so getting his radiation there isn't realistic

They have a hope lodge that you could stay in. I can try to put you in touch with someone who stayed there during the week and came home on weekends. Send me a PM to let me know.

I don't know how to send a private message

ptds,

At the top of Stoj's message, there are 4 icons to the right of the date and time. If you hold your mouse over the third one, you will see that it says "Send Private Message". Click on it and it will open to a screen that lets you type and send the message to him.

For more general information about using this site, go to the top of the screen and click on "faq" to see many common questions and answers.

Cathy

PTD, sorry to hear about what you are going through. I myself am being treated at Emory. It would be hard to imagine a better place for treatments. If you would like I will get a lodging phone phone number or you can call your Doctor and they will set you up with a case worker. Which doctor are you seeing now? There are so many people there who can probally help you.