Hi Amy from Amy. You gotta be special with that name I can't add anything to the above other than to echo the feeling that you need to get a 2nd opinion at a Cancer Center that sees alot of Head and Neck patients. Ask the two you mentioned above what percent of their patients are H&N Cancer- if it is low-go somewhere else. Keep telling us how you are. Amy

I went back to the oral surgeon today for a check of the teeth and the resection. He agreed with the H & N surgeons that no additional treatment is needed now - b/c I was stage one, good margins, no neck involvement, no vascular/lymphatic invasion, no perineural invastion and it was moderately differentiated - not poorly differentiated. I am comfortable with this decision for now. If something changes I might seek additional treatments.

I really just want to get on with my life. I feel as though 2 months were taken from me as I lost interest in almost everything except the cancer. I'm not married and support myself by working at a Children's Hospital - so I would like to get back to dating & to work so that I have enough money to pay bills. If I had radiation treatments / chemo - I'd be off work for another 8-12 weeks and I've already used all of my short term disability and all of my vacation time. A few co-workers contributed some hours of their vacation just to cover my first surgery where I was otherwise going to be unpaid.

Amy, Your decision to seek no more treatment is certainly understandable. We all have to work to put food on the table. It was very generous of your co-workers to contribute some vacation time for you. Sounds like a good group. And your confidence in your surgeons is wonderful. Good docs can be hard to find.

There are a couple of things I'd like you to keep in mind as your carry on with your recovery. First, please don't imagine that "chemo and radiation" is a fixed, inflexible thing. In fact everyone of us here probably had very different amounts and types of those treatments. It is always tailored uniquely to the individual.

And second, you can only get GOOD oncology advice from an oncologist - not from a surgeon. Even though we hold them in such high esteem, every doctor can't know ALL that there is to know. My father used to tell me that "The plumber will have an opinion about that broken light fixture, but if you want if fixed right - call an electrician." In much the way you would not ask your dentist to treat your sprained knee, don't ask your surgeons to 'know with certainty' that all you need is surgery.

Get one more opinion from folks who fight this particular disease every day. You don't have to act on their advice, only listen to it. Don't hide from this one, it is VERY unforgiving. No matter what decision you make, we are with you. Be strong. Tom

Amy,

My mom's original tongue cancer was a stage I clean margins no lymph node involvement so her ENT said "no radiation we will save it for a recurrance" not only did she have a recurrance (we still hate to call it a recurrance because we think it was just some cancer left behind that the surgeon missed) but she had to endure a second surgery loosing an even larger portion of her tongue and hard palate then she was just barely healed from that and then she had radiation and chemo. It has been 2 years since she completed radiation and she is doing fine now but if she had it to over again she would have opted for the radiation after the first sugery rather than having to deal the whole ordeal for more than 1 year 1st surgery April 03 then recurrance in Nov 03 radiation & chemo started in Jan 04 and ended at the end of March 04.
I would definately get to a CCC as soon as possible for a second opinion. I understand you wanting to get back to your normal life but you will continue second guessing yourself. Like everybody keeps saying this diesese if very unforgiving.
Take care and feel free to send me a private message if you have any questions.

Dani

Maybe the question I should ask - is: "What is the percentage of people with stage I, no nodal involvement have recurrent disease?" Does anyone have statistics on that? I'm much more of a stats person.

Amy,

You can drive yourself crazy with statistics -- and often you can find a set of statistics to support what you're hoping to conclude, but you're still dealing in the abstract with something that may have little or no bearing on YOUR LIFE. Statistical data can't give you any assurance about your own prospects for healing.

DaniO makes some good points about the chance you take when you "save radiation for later" and rely on surgical advice alone. I can assure you that there were plenty of us here who desperately wanted to get on with life right after surgery, but you aren't doing yourself any favors if you don't get the input of a qualified oncology team that will look specifically at your pathology reports, not at statistics.

Cathy

Dear Amy M.
First of all let me say how sorry I am to see that you have to face such issues at your young age. My heart goes out to you. I am a new member (mother-in-law of 33 year old non smoker Laura.) I can relate to your empathy for statistics. I studied biology and love statistics and yet I have to agree with Cathy G... Statistics don't always relate to your life. If cancers have a 97% cure rate and you are in the 3% then statistics matter not. I lived in a pediatric oncology ward and knew those 3%. Yet my son had a 2 % rate for two year survival. He was among the first few kids to live 8 years (recovered 33 years and going great!!) So although statistics are basically designed to give you assurance, I don't think they are as reliable as we all would like them to be as everyone is different. Laura will go for a second opinion after her surgery Tuesday. Remember you don't know what they will recommend until you go and you don't have to do what they say. It just never hurts to be armed with as many facts as possible. Laura will probably stay with her Doctors as she trusts them, but it would be nice to have the same recommended protocol from some other trusted authority also. What ever you do, I think this site is a veritable wealth of information and support and my sincere hopes and good thoughts go with you!!
Kathy

Amy,
What the statistics don't make really clear is that most people who contract H&N cancer are in their mid 50's and persons getting it at an earlier age tend to have much more aggressive types. We have had others here in their late 20's, initially dx'd with stage I and they died. They too were non smokers and moderate to non drinkers. Some of them chose treatment plans that were on the "lite" side wishing to avoid radiation and the effects. I hope am not scaring you but this disease is relentless, ruthless and unforgiving. Tongue cancer recurrence can be extremely dangerous as well. I would carefully re-read and consider Brian's post if it were me.

Stage II is on the border of recommended radiation according to the NCCN oncology practice guidelines. http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

I am thinking more and more that I will call the CCC at Ohio State on Monday morning and see if they will see me. The hard part will be convicing my parents that treatment is needed if that is what they say. I am going to ask a good friend to go with me to the consult, as my parents do not know right now that I am considering it. I think that would worry them too much right now. I am sure they will support me whatever I have to do - but they are my main support right now - as I live alone normally. My 2 cats certainly cannot drive me to and from treatments if needed.

I know you are not trying to scare me - I was scared before coming to this site. I think this site has helped me realize things that I didn't know previously.

I wish I knew there was a higher purpose for my life. I certainly can't see it right now. Why is it that all the mean nasty people are healthy and the nice ones are the people this happens to? I just don't understand.

There is peer reviewed publish data that shows that about 28% of stage one and two oral cancer patients have occult mets to the cervical nodes. If you are a statistics person as you state, I do not think this information helps patients in general or you. It still boils down to a best guess on you and your doctor