I feel like I'm on a roller coster, up and down and around, where the end. One day it's good news, the next bad, no one agrees. One day they got all the cancer, next time I see them they don't know if they got it. Last week I was being fitted for a mask and being told to get a peg, today I was told that my chart was in the surgeon's car, that she took it with her. The doctor said she took my case before the cancer board and they didn't think that I would need radation. I ask her if she got a clear margin and she said no, because of the bone. she said there was a gray area, where she just got to the edge. She said it would be up to me about the radation. When I ask her about a peg, she said," why would you need a peg?" i sure don't want radation if I don't need it, but I don't want cancer. My cancer doctors where not at the meeting, they work out of Uc Davis about 48 miles away, they come to the cancer center so many days a week, one is gone for two weeks. How do you make up your mind, when everyone tell you something different? I want the easy way, but I know I have to do, what I have to do.

Oh ruby
there is no easy way with this disease.There is the right way and the wrong way,and you sure dont sound as if you have found the right way yet.

I think it maybe time to find one of these specialised cancer centres that you have in america,and try to get some straight answers.Personally ,withou clear margins ,and so close to the bone,i know i wouldnt be happy with watch and see.

love liz

I agree with Liz. You need more answers. Without clear margins I don't understand why they would be comfortable with that and I don't understand the "no radiation" recommendation, especially leaving that decision up to you. That factual pattern just doesn't make sense. I got 5 opinions before I picked my doctors so I wouldn't stop here.

If it were I who was getting such mixed messages, I would do as Liz has suggested and get a second opinion. This is too important to worry about feelings. You don't have a clear answer yet, and to expect YOU to make the decision yourself without full information is not reasonable.

In my opinion, it is very important to know, as much as possible, that you are doing the right thing, and the only ones who know that are those who deal with it every day. How in the world could you make the radiation decision yourself??

In California, you have a wealth of quality medical institutions. I would call one today. Just tell your surgeon that you are not able to make the decision with the information that you have and would she recommend a center where they might help you make the decision. Or just choose for yourself and go there.

Call today. Most people DO get a second opinion. This is too important to wonder about.

You have to have clear margins. what's with those Drs? I had 1.5mm and like the local RO told me, Jim you definitely need rads and chemo. He sure was right. Get on someone back and stay there until you find out what the hell is going on. It's your life and not to be played around with.

Ruby,

You need to be very aggressive with this...it's your life and your choices. You have to make the right choices through research/experiences and due diligence. Staying on top of the situation is a must...My tumor (4.778cm) was removed from my tongue with clean margins...except...except to the rear of my tongue...even though it was a clear margin...the tumor went right butt smack against the clean margin...My ENT told me that's why radiation is so important...even though I had a clean margin.....it's too close not to do the radiation...radiation kills what ever is left behind...the unseen.

Now, for me...because of various tests...I was recommended to have surgery then radiation by 4 differnt Doctors that were not associated with each other. Radiation even with clean margins...But, all the decisions were mine to make...my life...my decisions. I'm recovering from surgery and can hardly talk right...I sound like I have a couple of fingers in my mouth, MAYBE IT'S MY FOOT...once I recover I'll be doing about 7 weeks of radiation. My choice and I have to live with it...and I feel my choices enable me the best chances of survival and that's what I'm shooting for...survival...living to 92 would be nice!

My group of Doctors included...my Family Doctor, Dentist, Periodontist, two Oral surgeons, Oncologist, ENT, and a Radiologist/Oncologist...Between the Doctors, the insurance company, FMLA, and my company...it's a full-time job...But an important one.

All of us here have important decisions to make and important questions not only to be asked but also answered. Listen, take notes, takes names, write numbers down, write all your questions down, get a loved one or buddy to go to all appointments with you...(my mother or girlfriend go to all Doctor visits...I tend to get lockjaw or brain-freeze and don't have questions until I leave their office(s). I'm one of those that needs a list of questions with me...

Margins...I'm 37...my margins were clean...close but clean...and I'm getting 7 weeks of radiation...my decision.

Stay on top of it and good luck!

Best wishes, Raymond

Well I called the cancer center yesterday and asked about the pet scan, I was told they would call me back right away, this was about the 4th. time I called in last few weeks. they didn't call so I went down there this morning and told them I wanted an appointment, the lady came out after a few mins. with a day and a time. when I got home it was on the answering mech. They had put it on there, before I even got down there so If I had only waited a little longer, I'm just getting tired of waiting. They are going to do it on Sat. I didn't think anyone would work on the labor day weekend. Now I feel bad. after reading everything I could on here and your replys, I called the doctor office and told them I wanted radiation, so they have set up appointmemts. already have a mask. went by the acs, she was very nice and gave me a name and number of a social service person, said they would be more help. She told me that her sister didn't need anybody to drive her, that she took care of herself. I asked her what kind of cancer and she said colon. she don't think radiatio/chemo is that bad....would be nice if she was right, but I rather listen to someone who's been there. I'm prepairing for everything if its not that bad, great, if it is then I'll be ready. Thank youall, you have been a big help.

I would make sure you have a ride...I know my cancer center has a taxi service...all I have to do is sign up...it's free through the hospital...well we pay for it indirectly, but it's there to use...and I will....just in case...

You should see if your hospital has something similar. Better safe then sorry.....

good luck

oh...getting radiation treatments on the colon is a lot different then getting it on the head, neck and throat areas...others can tell you more on that subject...I don't start until September 16th...

radiation from the neck on up is more intense...

good luck

I'd advise getting a ride set up until you are sure you don't need it -- I drove myself through my whole course of treatment, except when a friend wanted to help so I let him, but there were plenty of people who couldn't handle it, in fact one person was about the same age and health as I am -- Relying on one person's experience with another kind of radiation is not going to be enough, and I believe HN radiation is much worse than some of the others.