Thanks to all for keeping a forum like this for others.

I had surgery for cancer in bottom of mouth on 6/24 and am going to start radiation next week. Actually I am doing a simulation in prep for radiation.

No Chemo!

They also did the neck dissection on the left side of my neck. I don't know how to describe it except it looks huge to me. From base of left ear to just right of center of neck. (edited after original post)

My doctors are currently University of Virginia Health Systems.
I am trying to keep everything in one house. I don't know if that is good or bad this early.
(edited after original post)

I am confused about how much information even new people here have about their cancers. I have had surgery and I know only in layman's terms, if that, what is going on.

In my case, the doctor has told me that they removed all of the affected area and were able to get 5-9 centimeter margins around it everywhere except 1 centimeter in an area close to the front of my mouth.

For this reason they have advised the radiation treatments.

I saw the dentist Thursday and he thought I could get by with keeping my teeth. Even though the treatment was going to expose the front of my mouth with what he called a significant dose of radiation.

I get the feeling that doctors don't know what to tell patients and I know I feel like I have to learn the questions to ask to get answers for others that can help and advise me.

Anyway, This is me in a nutshell, I would like to post more in the appropriate forums about radiation and nutrition issues.

Again I want to say thanks for being here.

Welcome to OCF. Sorry that you had to join us. This is an awesome place to be and a great palce for support. I did not have to go through radiation, but a lot of others on here did. They will be of great help to you during that time.

Well, iI had rads and chemo together and then had to lose my teeth in preperation for rad seed implants in my tongue, My margins after surgery were 1.5 and I was told they had gotten all of the cancer, Yea they did and did 2 more operations removing more tongue. I had so many biopsies that I lost count as I did with all of the 3 types of scan, MRI, CAT and PET Was to be spaced out for 3 days for implants which turned into 7 days, After I was around for a couple of weeks, I had to have a CatScan to be sure OC was gone. LOL So they found a reoccurence of an abdomial aortic aneurysm which i big time rarity. They took 3 more scans to be sure they were seein right, This past Jan the 19th , I went to Allegheny general in Pittsburgh and supposedly they were going to repair it. Well the Dr on a follow up told me he just did the top half because he feared if he tried the lower end, he might kill me. I was supposed to wait 6 months for the Oncologist and surgeon to do their thing and tthis surgeon is the one that fixed my esophagus in 1996. He scoped me to be sure things were ok, Was set up for the aneurysm job and I had an appt with the surgeon that did the implants, He saw bone sticking out of my lowerr rigt jaw bone and an infection where my nech was dissected. Now the aneurysm is on hold and I have to get hyperbaric oxygen treatments and am antibiotics for the infection,. what the future holds right now I have no idea but I will beat whatever it is and come out smiling. I hope this will be of some help to you and soor I might have gotten carried away with this post. Good luck and you can kick this stuff.

Thanks Angelina.

I'm amazed at the persistence and strength people show here.
I have spent quite a bit of time today reading posts and others experiences. On the one hand I walk away feeling blessed and on the other I find myself freaking out over things I have not yet experienced. Thanks EzJim for your comments. They pull me out of wonderland and help me see my own realities.

Wishing you the best as well...

Thank you John

John
Welcome to OCF. You will find so much support to help guide you thru this. Are you being treated at a cancer center? Im not familiar with any of the places in yoru area, sorry. Its important to be seen by a team of doctors which it sunds liek you are doing already.

Even without chemo, radiation is still a long, rough road. The closer you get to the end of treatment is usually when you start feeling the worst. One thing to remember with all of this, everyone reacts to things differently. Some people suffer alot and struggle while others sail right thru. Especially the people who dont have chemo, they usually get thru it a bit easier.

Several things to keep in mind. Nutrition and hydration are most important to help your body manage the effects of radiation and to heal. Your intake should be 2500 calories per day and 48 oz water, of course more is always encouraged. Most of us here have had to work at swallowing daily (if you are able) and also stretching our mouths open wide to make sure we dont develop trismus (constricting of the jaws).

Please feel free to ask questions. You will be surprised by how quickly you pick up the OC jargon we use around here. There are several places to get lots of info too. Of course the main pages of OCF has tons of info and a search function as does the forum. Take some tiem and read the "Draft Copy", Im not sure what heading its under. Also there is a list of abbreviations posted here too.

Best of luck with everything.

My GP sent me to University of Virginia Hospital System (cancer center) in Charlottesville, VA. A teaching hospital. I am comfortable with everyone there. I have heard great things about the team around me. My only complaint is not knowing what questions to ask, which is on me to learn. Also, it is 2 hours from me. That is rough on the person (friend) driving me to appointments when I cannot.

Thanks for the info on calories and hydration. I was actually trying to lose weight to gain some benefit from this experience. Today I started thinking otherwise.

Thanks again ChristineB

Hi, welcome and so sorry you have to be here.

Here is the link to the "draft copy" that Christine mentioned. This may help you with the questions to ask your team.

Getting Through It - Draft Copy

I am in VA also. My best to you.

John,

Also get a dentist involved, hopefully one familiar with oral cancer and get started on a fluoride treatment for your teeth. I started 1 month pre Tx and I still use my trays every night. Teeth perfect.