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.

Beth,
Up until now you have had much the same surgery as me. I also had the painful arm while raising it above my head. Hair washing was difficult. Someone told me it could be that my arm was raised behind my head during the long operation. Went to a few sessions which I organised privately with a physio and in the end he suggested it would come good by itself. One day a few weeks late I just realised I was washing my hair with both arms up without a problem. Best wishes for the rest of your treatments.

Beth - My cousin was a nurse at Fairview Southdale for many decades - she just retired last year. Our kids were born there too.
Now, about cancer survival - this time ovarian cancer. My grandmother had it and lived to 93 and my mother also had ovarian cancer in the early 1990s and is still active now at 94. No one gave my Mom a "time line" but they did give one to my grandmother and I think she outlived it by somewhere around 30 years! And of course, there is a long list of survivors here in the OCF forum. Listen to what Brian said about "statistics". Keep us informed.

Hi Beth,
It has been 2 months since my partial glossectomy and total neck dissection. I, too still have soreness and my left arm is not as strong as the right. I am still numb across my neck and shoulders, but the feeling continues to come back, little by little. About a month after surgery, I asked my surgeon to write me a prescription for physical therapy and a very nice woman saw me right away. She gave me some simple exercises to do like clasping my hands together, lying on my back and raising my hands over my head. I did this every day, 10 reps, and have seen the progress. The PT said not to do too much, and to heal before going into much more exercise. I am doing much better now, but am feeling mostly fatigue from daily rads. Today ends four weeks, and I have 2 more weeks to go. Hang in there, and be patient with the healing. Your body has had a major trauma and will take time to rejuvenate. Don't forget your nutrition and hydration and try the 10 reps. You'll feel better soon!

Barb

Hi Beth,

I posted in your other thread but wanted to chim in about the statistics. Don't let them consume you, use them as leverage to show those doctors that your not a number! When I was searching for doctors, one gave me a 19% chance of a 10 year survival.

I know you must be struggling emotionally being so young and having people say "your young, your strong, you can get through it". I was 29 at diagnosis and I would ask myself would I live to see 40, will I be there to see my girls graduate school, that 10 year mark was stuck in my head from what that one doctor
said. So please try not to focus on the number, focus on beating this beast.

And we healthcare professionals are often the worst patients if you ask me, but it has it's perks too....like once they get chewed out for doing things incorrectly and they've figured out you know your stuff, they treat you like royalty!LOL

Beth

The doctors told you if you would have a recurrance after having radiation they wouldnt be able to help you. Thats alot of 'what ifs' in this statement. Please try not to even think that far ahead right now. I had radiation w/ chemo in 2007, a recurrance in 2008 that was taken care of with surgery. I had another recurrance in 2009, again taken care of with surgery. Hope this helps to ease your mind about the stats. Everyone is different, not many get to say they have had cancer 3 times in 3 years and lived to tell about it.

Your mobility in your arm should improve in time. It may not be 100% but it will get better. Your age will help you get thru this. The younger people tend to bounce back quicker.

I know going thru cancer is a terrifying time. Your hospital stay sounds like it was a long nightmare. Good thing you knew what was going on. Glad you have found OCF to help you thru. We are here to support you and will tell you the truth from a patients perspective.

Hi Beth,

Perhaps we're the youngest two in the bunch? I'm 23 years old and found out in March that I had cancer. First of all, I think you need to stop looking at statistics. I was a Statistic Freak when I found out about my cancer. That crap scared me to death. I was having panic attacks and literally planning out my funeral arrangements. My dad was so concerned about me that he called my ENT Doctor to discuss my situation. My amazing doctor called on a Saturday to tell me that I'm not a statistic. Everyone's case is different. Your case is your own, Beth.

I know you're scared. And probably pretty ticked off too. People our age should be starting new careers, getting married, or traveling. Why the hell do we get stuck with this crap? It's not fair and it totally sucks. Beth, this is just a bump in the road for you. I know you're going to do great through treatment. I got pretty annoyed with people when they told me a positive attitude is key, but it's very true.

I know how you're feeling emotionally. Probably one of the worse feelings in the world. Send me a PM whenever you want to vent.

Ashley

F**k the statistics. The first thing my RO said to me, 15 minutes after my ENT had given me the diagnosis - so I was still in shock - was "we'll get you through this". She then cautioned me not to read overly much into statistics I might find on the Internet. She was right about both.

Yes, absolutely, it's unavoidable that we all spend our dark time contemplating the worst. I'm as big an offender as anyone. But that's exactly what it is: contemplation. I began my process with the firm knowledge that this cancer was not going to kill me. Period, end of story. I'm not a wishful thinking kind of guy normally. I'm a realist. This was realistic thinking.

I feel the same way about you. I'm sorry your doctors told you what they did. I'm sure their less-than-ideal bedside manner is tempered by excellent medical acumen... but I can't give them any points for tact.

It's going to be tough. Radiation is a bitch. But you'll come through it with flying colors. Remember to lean on us!

Courage
David2

Hey I just read Ashley's post directly above mine; she's wise beyond her years - listen to her.

Thanks David. What a compliment:)

Ashley,I'm going to second David's compliment. I had the same thought as him about your post.

Working in the mental health/substance abuse field I spend a lot of time telling clients to be very careful when searching the internet. There's a lot of good info out there(and a lot of good support obviously) but there's also a lot of crap.

The stats were one place I really followed my own advice and I stayed away from reading it. I like the philosophy on here that steers away from individuals as statistics.
Dave's MD(from Sloan) told him that there is an 80 percent cure rate. I like that(like any sentence with cure on it). I immediately instructed him to make sure to be in that 80 percent and this is one area I expect my husband to follow what I say!!!

There are some tough moments in the quiet of the night where some unwelcome thoughts creep in but I try very hard not to indulge them and to remember our decision to be in that 80 percent cure category...

I think it's also important to remember that one just never knows in life. While we are worrying about the cancer, we can get hit by a bus. Or we can live full productive lives for many, many years. I think it's worth proceeding on the many,many years plan...

I don't look at the internet and I have since talked to my doctors and asked them not to tell me anything that I truly don't need to know. So at least I got that settled.

David, you are right, I am a realist to the core. When you do what I do for a job, help people with every day activities and then also help get them all cleaned up and ready for the morgue when they pass, its hard not to be a realist.

And yes, it drives me crazy when people tell me everything will be ok and everything will be fine. I would rather they try to show support by saying fight this with all you have, I know you are a fighter, so fight! Because to me, everything won't be ok, yes everything will be fine, but I don't like living a life that is just fine.

I am 25 years old, and I won't ever taste food the same again. Do you know how hard that is for someone who loves to cook and bake. They took the right half of my tongue out thanks to this beast, replaced it with skin from my left forearm. Skin doesn't have tastebuds, muscles, or nerves attached to it. I wont be able to taste or feel anything on that side of my tongue and I wont be able to move it the same. This is me being a realist.

Don't get me wrong, I am glad I went through that surgery instead of letting the beast win, but its just very tough right now to deal with.

I had so much going for me in the right direction for the first time in my life. A great job at a great facility with some pretty great residents. I was getting A's in my nursing classes and actually understanding everything, and I had friends and open lab buddies.

To have that taken from me, because of this beast, is what makes being positive so hard right now.
I know that I need to take this time to get better, and that I can always get another job, or hopefully go back to the same one, and that I might be able to go back to school. But for me, if I am not doing something to make me a better person, then I am just being lazy. And yes, a life without cancer I guess could make life better, but it doesn't make me a better person.

With so many restrictions, and no control over my own life, anything in my life, it's hard to be positive. Luckily my docs got me in to see a resident in the psych department and they put me on a anti depressant. I told them flat out, if they didn't get me on one, they were going to have one heck of a battle, when I get depressed, I refuse everything. So I am glad they did.

In a few more weeks, I should be less depressed, in a better state of mind, and be starting radiation.

Thanks for the advice and support.

Having had the same surgeries, I know that the majority of posters here will never truly understand just how hard you have it. I know I thought I did the first time around, but it wasn't until after I was left with an unresponsive tongue made of wrist skin, a petrified neck and left arm weakness that I realized I had had no idea of just how bad this all feels.
For what it is worth, the taste did come back almost fully on one side of my tongue around a year after surgery. Not much comfort to me as I can't swallow so have to spit out the teeny tiny portion I taste then spend half hour trying to get it out of my mouth and off my teeth. But if you can eat, you will probably be able to enjoy taste again with what's left of your tongue.
Glad you are starting the anti-depressants and hope they work for you. Take a look at our coping with anger/fear forum and the thread: "don't you just hate it" for some comic relief. I'd be surprised if you don't recognize some of the complaints.
As for being a realist, I always agreed with Lily Tomlin
[quote]Reality is a crutch for people who can't cope with drugs.[/quote]and Jane Wagner [quote]Reality is the leading cause of stress amongst those in touch with it.[/quote]
Charm

I'm so sorry to read about the tongue/taste thing. Damn. I didn't have tongue surgery but my neck dissection left me with half my tongue numb and unable to taste. Tasting food with half the available taste buds is, as one would expect, about half as fulfilling. But in the 14 months since surgery I've just become accustomed to it. The fact that you will too is no consolation, I know, and I wish I could wave a magic wand for you!

Getting on an anti-depressant is going to make a world of difference, I guarantee it. Prozac saved my life during a couple of tough periods years before I had cancer. I have no doubt that the newer and more effective SSRIs, assuming that's what they give you and I think they will, will be even better.

I, and we all, are here for you. So fire away whenever you want!

D2

Beth,
Ok! I am your shining light! I havent posted on here for awhile....that is because I am out living the hell out of my life and working a ton! I am 31 and went down the same path you are going down right now with all the negativity and doubts. Ask just about everyone here I was as stubborn and pissed off at the world as anybody could be. I went to 3 different radiation specialists waiting to hear 1 of them say that I didnt have to go thru with this, then once I made peace with myself and knew what I had to do I went at it full steam ahead. You read all these nightmare stories on here but what we have that they do not is age and trust me that means a ton! All of my doctors told me I would need a feeding tube, they all told me that I wasnt going to be able to drive to treatment, told me that I was going to be out of work for at least 6 months, that my speach was going to be impaired and my life was going to drastically change. WELL, lets see......I didnt take the feeding tube (though there was a couple times that I wish I did when the tears would roll down my face while I slugged down a VHC) not to mention I drove myself to treatment every day and played golf into my 6th week of radiation which helped with my rehab from my neck dissection as well and I was back to work 6 weeks after my last day of radiation. I have put back on 20 lbs I eat what I want and other then some tightness, a small amount of neck/shoulder pain and some saliva issues my life is pretty damn back to normal. I honestly might be in the best physical shape in my life thanks to this BS. I am looking at all the advantages this has brought me instead of dwelling on the negatives and as far as asking about your chances of living....ha I told them I dont even want to hear that cause unless they go by the name of God they really honestly have no idea. Stay positive, hell get an attitude against this because being mentally prepared in my opinion is way more important then being physically prepared!

Well well, look who popped out of the woodwork!!!

Great to hear from you Jim and I'm glad things are looking so good for you.