I had surgery april 13, 2010, and will be starting radiation in about a month, or whenever I am healed enough to start. They are predicting 6-7 weeks, monday through friday (30-35) treatments.

I am getting nervous, but trying to stay strong. I am 25 years old, A certified nursing assistant, and I was in LPN school when I was diagnosed.

My first hospital stay was 8 days, and I call them my 8 days in hell. I was neglected, and almost died 8 times, 4 times hospital staff, or med students were at fault. I think it made it more tough that I was in nursing school and have been in the medical field for 6 years, because I knew when people were doing things they werent supposed to be doing. But because I couldn't talk, I got walked all over, ignored, or told I was over reacting.

Second hospital stay wasnt nearly as bad, But I hate going into the hospital now. I also hate the NG tube.

Pretty nervous because doctors say after radiation, if cancer comes back and is inoperable, they won't be able to do anything but keep me comfortable until I pass, and they said I have a 50% of not making it past 5 years.

It's tough to hear that I might not live to see 30. I try not to think about it, but when I am not allowed to work, go to school, or exercise other then walking, and I can't use my left arm, it's pretty hard not to think about it.

Don't believe in any statistics, they can be manipulated to say whatever you want them to. There's an argument I made against them (when thinking of myself) on the staging page of the OCF website here http://oralcancerfoundation.org/facts/stages_cancer.htm

You are young and tougher than you think. Your age is an advantage, and you don't have old people's collateral issues. Don't think of needing radiation a second time. It is going to kick this cancer's butt the first time araound. If you need a feeding tube in the future, it won't be and NG but a PEG. None of that hardware hanging in your face, and when you're not using it, hidden under your blouse.

Personally, though you don't say where you are being treated, I don't care for these doctors attitudes. They are unnecessarily negative. After you have been on these boards for awhile, you are going to find that there are hundreds of us here that were later stage finds than you, that are still causing trouble many years out from our original treatment....I was stage four and I'm here 12 years later. There's nothing special about me biologically. In fact - I was a 98 pound weakling and the bullies at the beach used to kick sand in my face until I found a matchbook with a course from Charles Atlas in it.... Hum... you're too young to get that reference. But the idea is that your young and tough and can physically deal with whatever they throw at you.

This is going to be tough, but it, like all things, will one day be in your rearview mirror and life will go back to being normal. You will think of your cancer, and it will always be part of who you are, but it does not have to define who you are. Hang around the boards, talk to others that have done this dance. Ask for opinions, complain to us, or see if we make you laugh. For the time being think of the people here as your extended family.... they will treat you like it.

The mental part of our cancer, probably all cancers, is 50% of our battle and is especially hardest when you are told "you have cancer" for the first time. You can deal with the mental part by talking to people on this site because we know exactly how you feel. Hang in there and I'll guarantee we will get you through this and soon you will be posting your experience to help others. Use us 24/7 for ANYTHING, and I mean anything, your significant other, your kids, your inlaws, your neighbors and even your cancer.

Beth

It is indeed daunting to hear that 50% figure from the doctors. I'm sorry your doctors appear to be simply parroting the Gov't oral cancer figures of 50%. My doctor's all stressed it's very individual. BTW, the statement that nothing can be done if the cancer comes back is much more of a candid self assessment by your doctors of their limited medical ability/ knowledge of oral cancer TX than reality. Just look at my signature line. In fact, all my doctors have agreed that if my cancer came back a third time, it would be "catastrophic" but they still have a TX plan instead of hospice.
As far as the future: you have one. When you have come through all this on the other side, you will see that. In the meantime, you don't have to deny you have cancer, but you don't have to become a victim to it either. REMEMBER you are still the same person you were before the Cancer.
Keep the faith
Charm

Jim's ENT surgeon told him the same thing - "I won't be happy until two years have passed without recurrence because if it comes back there's not much more we can do." NOT what a cancer patient wants to hear after enduring months of treatment. Couldn't he just have left that part out? But we quit paying attention to his gloom and doom attitude after my dear spunky friend who is a 14-year survivor of breast cancer which has come back twice in different places, told me her surgeon told her the same thing. According to his statistics she was supposed to have died in 3 months, and that was 10 years ago. Heck she seems and looks a lot healthier than I do.

Now Jim's oncologists on the other hand have never mentioned percentages or survival rates which we appreciate very much. They just deal with the problem at hand and administer the treatment. Maybe it's just a difference in bedside manners. Some want to prepare you for the worst I guess.

We put our faith in the Lord and get encouragement from all the nice people on this board who have experienced so much and are living proof that this is a battle but we can continue to fight.

Debbie

I love my surgeon who wisely said "Either I will die of this cancer, or I will die of something else". It made me laugh out loud, but truly puts all statistics and percentages in their place.

Donna

Beth,

Boy, it sounds like you have had a very difficult time with this surgery. Where are you being treated that you are receiving such poor care? Most of us try to go to one of the Comprehensive Cancer Centers where they see thousands of cases like ours. Here is the list of centers from the resource section of this forum:

http://oralcancerfoundation.org/resources/index.htm#centers

You might want to go to one of them for your radiation.

How is your right arm? Can you still raise it up over your head? Do you have any pain? If so, you should be receiving Physical Therapy. Ask for a script and a referal to someone who has experience with people who have had neck disecctions.

Take care,
Eileen

Hi Beth and welcome. I'm so sorry life has dealt you this SH*TTY hand but you have found a great place to come for information and support. Please don't read to much into the statistics that are out there. I drove myself crazy with the numbers before I found this site. I was so afraid my husband wouldn't survive treatment let alone the next five years. Let's face it, none of us know when our number is up - cancer or no cancer. I'm so sorry that your hospital experience was so bad. My mom had the "Whipple" at Johns Hopkins when she was diagnosed with Pancreatic Cancer because they were tops in the country for that type of surgery. Her surgeon was wonderful but her hospital stay was a nightmare. A family member had to stay with her at all times because of the incompetent and absent "after surgery" care she received.

Keep posting and reading. Unfortunately there are many here who have walked the same path. Wishing you all the best.

Eileen, my right arm does hurt, I am a month out of surgery, and my right lower teeth and gums hurt and I havent even started going through radiation yet. No one has contacted me about physical therapy, and I wish they would, because now it hurts all the time, not just when i lift it above my head, unless I take my pain meds, which I don't like taking, they make me feel bogged down, . But I am being treated at the U of M fairview medical center university campus in minneapolis, MN.
My second run in the hospital was a lot better then the first.

A young tough gal like you will be like me and go for 100 years of tormenting people. Get that positive area of your brain in gear and go for the age record. Good luck.