hello everybody, my name is Marie, i'm 34yrs old, mother of 3, I live in Norwalk, CA. I was recently diagnosed with SCC in my right tonsil which they removed on 8/4/06. Now it has spread to my lymp nodes and I must have radiation and chemo and I'm scared to death. I'm a very perky person always on the go. And to be told that I might not even have the energy to get out of bed scares me to death. right now I know that I'm stage IV, but I in the process from transferring from a county hospital to Long Beach Memorial. So I meet with the radiation team 8/23/06, monday I'll know when I meet the chemo doctor. I'm afraid that it has spread even further since it's been 2 weeks. I wish I knew exactly what to expect from the treatments. How is it really going to affect me. Please Help!!!!!

Hi Marie-

I don't know anything (a newbie myself), but I'm happy to compare notes as we go through this. I'll share whatever seems useful. A nurse friend suggested I try to gain a few pounds and eat whatever I'll miss. I have a banana cream pie with my name on it set up for dinner. Sweet!

Teamshrink

PS: I'm scared, too.

thank you, i also heard that after treatment starts that it will feel like glass is going down your throat when you eat. I still can't eat certain foods and all they did was take out my tonsils. My husband tries to help my fear but hes right it's not happening to him directly so hes afraid of saying something wrong. I feel so tired sometimes and I haven't started treatments and the lump in my neck hurts at times.

P.S. we all can be scared together

I was diagonosed 8/7/02 with stage 4 tonsil cancer. Had 9 hour surgery to remove the tonsil and a radical heck disection. 4 of 75 lymph nodes removed were positive.

6 weeks after the surgery, I had 33 radiation concurrently with 7 weekly chemo. The recovery was very tough for me. There was episode of infection that I had to stop the radiation, and the recovery is slow, I end up had hyperbaric oxygen treatment too.

It took me a good 12 months to start feeling better, the bottom line is that after the agrressive treatment, I am still around today.

There will be 3 to 4 weeks during the radiation that you cannot eat because the throat hurts a lot. I had to take some medicine to numb my throat before swallowing.

Marie, your time frame between surgery and rad/chemo seems about normal to me. I, too, was a stage IV and had to wait even longer while some teeth were extracted. Our cancers were growing for a long time, so a couple of weeks won't make any appreciable difference.

Now, about being afraid. Just look at this as one short battle you have to fight. In the overall scheme of things, this is a very small period in your life. I was tired, but never had to stay in bed. I cooked for my husband sometimes and did laundry. I just took things slow and easy.

I prepared myself mentally for something really, truly horrible, and it never even got close to that. I had a PEG so did not have to worry about the pain of eating. I think that made things much, much easier for me.

Put on your tough pants, Marie, and just march right into battle. You can do this and do it well!

Marie, I too was diagnosed with SCC in my right tonsil. I also had my tonsils taken out, and i have had a lymphnode taken out (cervical) too. I have just completed my first week of radiation and to be honest, it was no big deal, didnt feel anything. The mask is the worst part! You have to get use to that in itself, but other than that, week 1 is easy. I will let you know about week 2 as soon as i complete it. If i can help you in anyway, please let me know. Good luck, and stay strong. Go into this with a "positive" attitude...and know you have tons of people on this forum that will help you get through this.

Marie, Just posted that I hadn't read your other posts, then saw this one. Is your husband up for getting on this website and reading about your tx. from people who have been through it? I promise- it will be a Great Benefit to him as a caregiver and keep his fear level down if you have side effects during treatment. Since you have young children, you and your husband will need a support system in place to help with household duties because you will not feel "too perky" while going through treatment. And while treatment is different for everyone, there are some guarantees that at some point, you will need to curl up and make the world go away for a while. So now is the time to address issues like car pooling, gro. shopping, school demands, household chores, etc. No one should count on YOU to do anything other than concentrate on getting well. And you can contribute when you feel up to it.Now is the time to get everyone organized. We are here for you. Amy

Hi Marie;
and welcome to the forum. It's ok to be scared shitless - we all were (and I still am every now & then). Don't to too concerned about what might or might not happen in the future. Your experience may be very mild compared to others as we all respond differently to treatment.

I had a right tonsil, advanced staging as well and only had radiation and chemo and 3 1/2+ years later I am still here and doing well. The worst part of the fatique, if it hits you, will be roughly from mid treatment to 2-3 months post treatment. As others have suggested you will need a support system. If you can stay on top of fluid and nutrition requirements then you may be able to shorten the time a little bit. I met with a nutritionist weekly.

It was probably already in your lymph nodes and they missed it. If you can find access to a comprehensive cancer center I would highly recommend it. There are several of them in So.Cal. Here is a link to the NCI recognized cancer centers:
http://www3.cancer.gov/cancercenters/centerslist.html

Marie, Gary is quite right that people ary widely inn terms of how hard they find the radiation and chemo. My philosophy was hope for the best and prepare for the worst.

So as Amy said, make sure you call in every favor owed you and put every person who asks to help to work so that you do not need to be the one taking care of other things during your treatment. If you have never made it all about you before, this is a battle where it is definitely all about you. Remember that (I think it's often harder for women to do that because so many other people rely on them). I'm not saying to neglect your family when you feel up to being with them, just remember that for this couple of months the first (and it may become the only) thing you need to do is fight your cancer battle.

As for being scared, we all were at the point you're at and most of us still are from time to time anyway. Feel free to talk about that here if you need to.

I have gotten tons of good information and great support through this forum. I hope you find it equally helpful.

Nelie

Hello everyone, I too am a newbie I was diagnosed last month with SCC base of tongue w right side lymph involvement state IV. I have had 4 weekly rounds of chemo and am going in Tuesday for Radiation initial evaluation. We are all in this together and I am so thankful for this site and all the information it contains. Thanks Brian for all your work.

Joe