Amy,

I am really sorry you are having to deal with this horrible disease. It is admirable you are trying to protect your parents and in some sense shield them as you gather more information. Should your decision lead you to the conclusion of going through with chemo/radiation, there will be ample opportunity to draw them back in. They would no doubt do the same if the tables were reversed. Find the medical team with the most experience preferrably at a NCCN member institution. Attack with everything you can, you may only get one chance.

Best wishes,

Ed

Amy, They will try to get you in as quickly as possible. They understand time is important here. I understand not wanting to worry your parents at this point. if the opinion you get from an oncology team that deals solely with head and neck cancers is that you need radiation, it sounds like your parents will end up supporting you as you go through treatment.

Come back and let us know what happens when you get a chance!

Nelie

Amy,
I was reacting to your own statement here in your earlier post: "I don't really know what to think. My parents have been very supportive - but they think my fears of recurrence are unjustified. My mom thinks that just b/c it was removed that I have no chance it will come back. She gets mad at me when I look things up on the internet and then get upset about it. My dad just takes the surgeons words as gold."

It sounds to me like you have great and loving parents and they (and us for that matter) want to share their optimism but the reality is that H&N cancer is a stealthy and deadly disease.

At a comprehensive cancer center you would have a team of doctors and probably a tumor board where they all convene and discuss the best protocol for your treatment. I am a little surprised that you didn't already have a consult and evaluation with a radiation oncologist and medical oncologist in your pre-treatment workup and planning.

We have a lot of great local hospitals around here too and if I got into an auto accident that's the first place I would go but as far as cancer goes - I wouldn't accept anything less than a comprehensive cancer center (CCC) or cancer center (CC). I traveled 60 miles a day for my rad treatments at a CCC. Many others have traveled even further. I attribute my very survival to going to a CCC.

By the way I had tonsil cancer, lost over 60 lbs and have made a full recovery with 3 years cancer free. 10 years ago they were practically in the dark ages in regards to treatment options. They didn't have advanced 3D conformal, IMRT, PBT, PET scans, anti-emetics (that work) or all of the chemo cocktails that they have today.

Please don't take any of this as a criticism. We take educating patients to be their own advocates very seriously. This is a lethal and unforgiving disease and mistakes in diagnosis or treatment can have very serious and/or deadly consequences.

Amy,
This is a mean disease. It rarely takes prisoners. Please get to a comprehensive cancer center. From all the stories I have read and research I have done on oral cancer (and that's A LOT) this cancer will not give up easily. GIVE IT ALL YOU'VE GOT and then some. This includes the top treatment and doctors in this field. BEFORE starting radiation or chemo GET TO a major cancer center. Once you have started treatment somewhere you can't get in to see them until it's completed. (at least that was our experience). CALL TODAY! Do not let distance, family or anyone else disway you. You're fighting for survival.
As for bad things happening to good people, you are not alone. So many are on this board. Good people who this disease has struck. They have faced it and made the very best of it, as good people do and as you will. I understand your frustrations. I know it doesn't make logical sense and what Brian said is correct, but the gut human instinct is "why me?" I keep thinking that with my brother. A guy about his age in our community had a horrible accident about 1/2 way through my brother's battle. He seriously injured and out in freezing temps for hours before he was found. He was extremely intoxicate which may have actually keep him alive. He had to learn to walk and talk again. He is now well and back to doing the same things - drinking, fighting, and a poor father. It angers me that he does not respect the second chance he was given. Why him? Why not my brother? He would have treasured the opportunity to continue living, to see his little girl grow up. It's often crossed my mind that it's harder for the "bad" people to die. Maybe it's their will or lack of fear or consequences. I keep wandering how God could take my brother from his little girl. He had such a good heart and forgiving nature. Some days I've had to repeat to myself, over and over, "It rains on the just and the unjust alike." It's only natural to wonder "why" but force it to the back of your mind and focus on total recovery.

Please keep us updated on your progress.
Lots of love and strength,
Tonya

Amy not sure what you ultimately decided but thought I wold add a few things. I had a very similar diagnosis as you 4.5 years ago with local SCC on side of tongue, clean surgical margins and clean nodes. I did not get radiation at the time. Just recently, 3/31/06 I had a recurrence on same side of tongue and had surgery to remove a .5cm tumor which went well. Margins were thin and I am scheduled to start radiation shortly given my narrow margins and recurrence. My one piece of advice to you is if you opt against radiation, make sure you get followed up frequently and don't let them start to spread you out as tme passes. For whatever reason you and I got this in the first place,i was 27 and non-smoker, light drinker, we are obviously at higher risk it can come back so you want to make sure if it does it gets caught early.

Warren,

Thanks for posting. I ultimately decided against radiation (actually it wasn't really a choice - not one doctor was willing to do it anyway) - but I agreed with them. I had my PET /CT at the beginning of April and that was negative - so a relief for now. I am on a 6 week schedule with my ENT / surgeon right now. I actaully have another appointment on Wednesday. Yes - if I have a recurrence - it will be treated in much the same way as you - they have all said if a recurrence happens - radiation will be given. They just didn't feel it good to do it right now given all the conditions of my case.

Amy

I agree with them 100%. After my initial episode radiation wasn't even discussed. Good luck with everything and I just want to reiterate that even if you have multiple clean follow-ups don't let them start spacing out your appointments which is protocol. Insist on sticking to a 6-8 week schedule as it can't hurt and can only help. As you know, this is very treatable if caught early.

One question - how did they find the carcinoma in situ? Was it through a scan - or are there visible changes in / on your tongue that they can feel/see? Just wondering what to expect. Do they do biospies down the road to check? I am only 3 months out from surgery and still have lots of questions for each doctor's visit.

Amy
In my case the carcinoma in situ was visible, the first time an ulcerated area that would not heal, and the second time as red inflamed area that never went away. My advice would be to get to know the inside of your own mouth so that between checks you can be aware of any visible changes..
Sunshine.. love and hugs
Helen

Amy:
Your story sounds similar to mine except I was diagnosed at age 38 Non-smoker, non-drinker. My diagnoses was Stage I well differentiated, and had partial left glossectomy with 19 nodes removed. I was first seen by a oncology radiologist who suggested surgery instead of radiation. He told me if I had radiation and had recurrence of cancer in the future, radiation will not be a choice at that time. I felt better to go with surgery especially a radiologist recommended it. It has been almost 14 years since surgery and I never had second thoughts of getting radiation treatment. As far as the recovery from the tongue surgery, it has been a long slow process. Although my speach has recovered, but nerve of the tip of the tongue did not grow back completely.
I also felt why do bad things happen to good people and good things happen to bad people. I read a book by Bernie Seagal, MD and he described that bad people express their anger outward and good people keep the feelings to themselves. This really hit me hard since I tend to keep my feelings and anger to myself and try not to cause trouble. I read his books and listened to his audiotapes, and it really helped me during recovery. I also read a book (Getting Well Again) by Dr. Carl Simonton and Stephanie Matthews-Simonton that describes using guided imagery to develop positive attitude. It did not take the place of the medical treatment or surgeries, but it did more for me emotionally during the process.