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.

Hello, John. Along the lines of nutrition, you probably should eat everything you want ahead of time as you will probably be living on Ensure or some such nutritional supplement for some time once it gets going. Any food you think you will miss, eat it now.

John,

It sounds like you have lymphedema in your neck. This is due to removal of the lymph nodes and the accumulation of lymph fluid which has to find a path for drainage.

Have you addressed this problem with your doctor(s)? There are therapists that specialize in massage therapy which will help drainage paths to form. You can be taught how do this on your own.

Please look into this and you will feel better after the swelling goes doen.

Jerry

Thanks Catherine. This is what I have been looking for.

I will look into the massage therapy. I was unaware of the extent of the dissection going in. You have me thinking about why "The Team" has not spoken to me about therapies. My arm has started feeling a little weaker weeks after the surgery.

Maybe they want me to finish the radiation first.

John

I was so happy to be spared a neck dissection the first time around. My second round with Cancer did require a ND on the left side. My team started me on physical therapy to strengthen the shoulder muscles plus get scar massage BEFORE they did more radiation but then I also had surgery to remove the second tumor at the base of my tongue.
Radiation will really fatigue you but at a minimum rotate your neck every day on your own. The Physical therapy exercises were rough. The hardest and most painful for my neck was the "Shaker exercise": Lay on the floor flat and raise your neck to look at your feet: Hold this for one minute, then rest one minute, then repeat two more times. Next: Raise and lower your head 30 times. CAUTION; CHECK WITH YOUR DOCTORS FIRST to see when you should start PT or even attempt the Shaker.
the neck dissection has left my left side permanently numb and with skin like petrified wood- although the scar does make look like I had a dangerous past where my throat was slit in a barfight gone bad

Do what you can on your own if this is their plan. I tried doing normal routine things throught all they pitched over my plate and I came out of things half way decent LOL but never was normal. LOL Have a good day and just try things and after ask your Drs if this is OK.

I started physical therapy shortly after both neck dissections and continued twice a week through radiation. It helped with the lymph drainage, strengthening the arm, and massaging the scar. I also had intra and extra oral massage to help avoid trismus. Look into it, I highly recommend it.

If you arm and shoulder are starting to bother you, you are probably putting too much drag on it. Don't let it dangle for hours. Make certain your desk chair has arms. Put a pillow under it if sitting on a sofa. If you are walking a long distance, you may want to support with hand under the elbow. This is of course until the PT gets your strength back. I did not have any SHAKER exercise or any other torture that Charm describes. My sessions started with 20 minutes of moist heat, followed by neck massage and arm stretching movements, then strengthing exercises and closing with a back and neck massage. Almost as good as a spa.

Also read in the GETTING THROUGH IT PROJECT forum, the thread 'What I wished I knew'. This was the basis for the draft copy and is rather random, but has a lot of info.

I am one of the few around here who had only radiation but it was XRT. You probably will have IMRT. I think it is easier on the ones who have no chemo.

Take care,
Eileen

Hi Eileen

Thanks

Hmmmm. I am told and read great things about my doctors but no one is really saying these things to me. These services like PT and massage exist there but I simply got a brochure. Is that typically it? After I talk to real patients I hear recommendatons and advice. Talk that others appear to be avoiding---- or waiting for me to talk about it.

Kind of weird. I would think someone would be selling me the package.

My friends wife says I look like the bar fight happened. Funny how after quitting drinking (2yrs), smoking (3yrs) I finally start to look the part.

The neck is tight and feels weird. I tend to get headaches after driving alot and turning my head alot. My arm is not too bad, but when I lift it I feel a place where it seems like energy is just pouring out of me. When I let my arm down I feel ok until I really get tired. Another weird thing.

Thanks Charm

Jim or anyone,

Books by Gary Anderson. Cancer 50 Essential Things to Do?

You guys read him? Sounds like he makes sense, but on the web I just see him asking for donations.

Ask your surgeon to recommend a PT that specializes in problems related to a neck dissection and lymph drainage from radiation. You will need a script. You do not sound like you at a CCC for treatment and even some of us that are, need to remind the docs we need this. Trust me, there is no package. You need to be your own advocate when things aren't working.

Take care,
Eileen

I never heard of him myself. I never really had much recommended to me but I was dealing with 4 Hospitals and maybe they just never thought. Like the massages and therapy, Not one time was I told abou them but would have been a damn hard head and said I didnt need them. LOL

Got this off of the web. I think the lack of info I am getting may be my fault because I have not been my own "advocate" and just following along up until today.

Thanks Eileen

National Recognition

�UVa is ranked as one of the top cancer centers in the country by U.S. News & World Report
�UVa is one of only two National Cancer Institute-designated Clinical Cancer Centers in Virginia
�UVa has an active clinical trials program, with many clinical trials developed by UVa researchers and physicians. UVa also participates in national clinical trials and studies with other leading institutions across the country

EZJim you sound like a tough old bird. Makes me smile.

John:

Sounds like you are going to CCC and I am sure you will get excellant care. I went to Duke (a great hospital) and I had wonderful care and most importanty excellant results but I did have to ask questions and follow up on "small" things. I think they get so focused on "getting" the cancer, they forget about the day to day questions, issues and individual after effects from treatment. They always welcomed my questions and handled any concerns. Sent me to PT when I had neck issues, pain mgt, how to relax during rads, etc but I had to ask ! I oftened wondered why they did not have a handout with a FAQ ? So my advise is to always ask and stay on top of your own care.

John

Never heard of Mr Anderson until your post so I checked him out. I am always leary of guys with Pyramids on their web site asking for money. He looks like the classic pitchman - very slick (bordering on slimy)
Nothing special at first glance outside of the usual tyranny of positive thinking crap that says if you don't survive cancer it's because you had negative thoughts. His book seems aimed at making people WITHOUT cancer feel good about themselves for buying it to give to those of us who do have cancer even though we are sick and tired of its contents of stale platitudes. Oh the usual nutrition pitch. Thank god nobody bought his book for me.
What really interested me was that they posted their IRS form on the web site showing that their donations dropped from 21 Million dollars a year to 10 Million dollars a year yet they raised the salaries they paid to almost 500 Thousand dollars. Wow , what OCF could do with money like that. At least he's honest and transparent but too simplistic for my taste and my cancer experiences.

Thanks Deejer47. I got a week to start Radiation. I can swallow better and one side of my tongue can taste food. I still have limitations but I think I will over come or work to for these eaely weeks.

Yes. Like I said, I think it has been about me not asking the right questions. Since you guys are around now I am learning to take charge and am researching my situation.

Thanks. It's hard to know who is who out there. Good or bad

What do you mean tough old bird hisnibs LOL I am only 22 years older than you > Got me laughing myself on that one.

Experience qualifies us for the Tough 'Ol Bird award. Not age necessarily. Since my surgery I went to my car service dept and told them that I was a loyal customer that I was tired of paying list price for parts. If my loyalty was worth anything then I expected to see the value reflected on the bill. It worked. Got 100$ off my bill.

I had a tough ol bird moment born of my new credentials as a survivor. (surviving-not sure which)

I am determined to satart showing my value on earth to those I encouter. Like 320$ worth of repairs in a struggling economy. Yey me. They wanted 440$