Nelie,

I forgot to mention the reason why I asked if Marcy was a non-smoker. One of my doctors mentioned that the most aggressive types of tongue cancer seem to occur in young people who are not smokers. I was told that my case is closer to a "textbook" type case. Namely, despite the fact that I'm relatively young (I'll be 35 next month), I smoked cigarettes for a bit over 17 years. Furthermore, I smoked a lot of cannabis (i.e., marijuana) throughout college and graduate school. To this I could add that I was addicted to diet sodas and ate way too much meat. Of course, this has all changed. In fact, I underwent a MAJOR lifestyle change a few months before being diagnosed (no more smoking of any type, better eating habits, etc). The point is that my case is not particularly extraordinary in the sense that my habits clearly promoted (if not "caused") my cancer.

Gino

Gino,

Good luck tommorrow. I follow your thread very closely- as we have a similar situation and I am struggling with the issue of radiation as well. I was not a smoker however and don't know if any of my nodes are positive with micro amounts of cancer. I am going for my second opinion on Thursday at Ohio State Cancer Center. If they say it is needed - then I'll probably get it - as I think that is what you are leaning towards too.

Good luck!

to the person who posted: "If you die you won't have to worry about forgiving yourself." I don't think this was really necessary was it? Those of us who are seeking advice are seeking it to make an informed decision we are comfortable with. We don't need to be told that we might die if we don't have the treatment that others have had or that you think everyone needs. Every case is different and without all the facts and history - comments like that are really inappropriate. Quite honestly - those of us facing this disease as a new thing in our lives are already scared silly (as you probably were when you received your diagnosis). Death is already an issue in the back of our minds although we would like to think it wouldn't happen (especially at such a young age). To have someone very emphatically say that it would happen if they don't have the treatment you suggest - isn't appropriate. Please be considerate. I know we are new to these forums and may not have the experience with this disease that you do - however, we still don't need to be given a death sentence by someone on this board if they choose not to have a treatment that is not a clear cut decision.

Gino,

I think you are confusing me with Minnie. I had a stage 2 tumor and no mets at all--micro or otherwise, alhough I did have some other signs of an aggressive cancer so I went ahead and fought it all the way the first time.

I think you are misunderstanding what your history of smoking does to your risk of recurrence. From everything I have read, it makes it worse, not better since oral cancers in nonsmokers may be caused by HPV and there is some data that HPV-caused cancers have a higher cure rate. Also, the history of smoking means the whole of your mouth has been potentially exposed to an agent that caused your cancer, this is sometimes called "field cancerization" and may increase the likelihood of a recurrence somehwere else in the mouth. I say this as an ex-smoker myself. But if you are unsure about this, ask them at MD Anderson.

I agree that the comment "if you die you won't have to worry about forgiving yourself" was a bit much. There was a period of a couple of weeks when the information I had was unclear about whether I needed radiation or not and the decision process was hard and scary enough as it was, and inducing a strong fear response really does nothing to help people think it through carefully and seek more information, as both Gino and Amy are obviously trying to do.

Nelie

Nelie,

My apologies for confusing you with Minniea--it has been a long day. With respect to the issue I raised about young non-smokers, I was told by a doctor at the CCC where I was treated that the most aggressive tongue cancers he has seen in recent years occur among this group (i.e., non smokers who are in their twenties and thirties). I don't think I misunderstood when he told me this--he was pretty clear and straightforward. Can it be that "agressiveness" and "chance of recurrence" are two separate issues? I'm not sure about that. Of course, it's well known that smokers are at higher risk than non smokers for several types of cancer, even after they quit. And it's really no surprise that oral cancer is no different. I will certainly ask this question to the folks at Anderson.

Amy, I'm happy to hear you'll be going to Ohio State for a second opinion this Thursday. Write down all your questions beforehand. I'm even taking a tape recorder. I'm hoping the doctors allow me to record our consultations. Best of luck to you and keep me updated.

regards,
Gino

Gino and Amy M, As caregiver to my soulmate, who is battling the reoccurance of this damned disease, I wish you both the best advice and treatment out there. God Speed. Amy

Hi Amy,
I don't feel Gary's comment about dying was inappropriate in any way. Scary maybe, but not inappropriate. Please keep in mind that this board IS scary, none of us WANTS to be here. Lives have been saved by the words given out on this board. Gino is facing a life/death situation right now, so any mention of death is certainly warranted. If Gary didn't care, he wouldn't comment. Also keep in mind that all of us on this board think of death every single day, and some of us have been for quite some time now. A lesson in the fear of this cancer or how it makes us feel is not needed, we've been living with it on a daily basis.
Now, before I come across as being cranky, please don't feel that I am. I feel strongly about the decision that Gino has in front of him. It's why I posted about Marcy and why Gary made the comment he did. I don't think that we have any posters on here that had mets to the neck and didn't have radiation. I wonder why.
Minnie

My mom had her first surgery for her stage I tongue cancer and also had a neck dissection. All of her nodes were negative (no signs of cancer at all) and her ENT did not recommend radiation. She did have a recurrance and was lucky that they acted on it quickly and she was able to have radiation after the recurrance. After her recurrance her cancer could no longer be staged. I had not done much research after the first surgery but wish that I would have.

My mom has the same ENT as a girl named Stephanie that was posting in this forum. The ENT performed surgery on both my mom and her mom and did not recommend radiation. They both had recurrances and my mom was fortunate enough to have been able to get the radiation after her second surgery and she is doing great today but Stephanie's mom passed away. They were both battling this at the same time. I think that saving the radiation for a recurrance is a risky thing.
During my mom's battle with this diesese both Gary and Minnie were there for me every step of the way. I cannot say enough wonderful things about both of them. What Gary says may sound harsh but he is only speaking the truth.

I hope that both of you find the answers that you are looking for and I hope you find them quickly.

Dani

Cancer recurrence isn't exactly like a recurrence of the flu. I been here a while and seen too many people die from recurrences. Frankly it scares the crap out of me (and fuels the saying "you can be cancer free - but you are never free from cancer"). And we haven't even touched upon distant mestastesis threats. It's not in my nature to sugarcoat anything. I am a patient advocate and "Feel good" crap is not part of my charter. This is a deadly disease and the survival odds aren't exactly the greatest, nor have they substantially improved in the last 10 years. There are 28,000 new cases every year and 9,000 deaths. I die a little inside every time sometime dies here - it's like a little piece of me dies with them (Heather, Gail, Dinah, Marcy, Packer and many others names are permanently imprinted in my brain.. Have you ever wondered why there are only a handful of regular posters on this board or why so many of the original posters are not here anymore?

I don't know if Gino is facing a life and death situation but he is facing a decision that could ultimately determine his life or death. Too many times I have seen people attempt or rationalize to take the easy way out, either by the "convenience of the local hospital" (not having to travel to a CCC), or believing a surgeon about clean margins. Or afraid of radiation side effects (and it does have side effects) All cancers start out with one mutated cell -that's all it takes. Microbiology 101.

When you've been around here long enough and watched the death toll on a regular basis (and some of these are far more courageous than I could ever hope to be). I guess my real fear is that I won't be able die with the same dignity, courage and fortitude that I have seen here. Was my comment meant to be "deterministic"? I am not a doctor - all I have is 3 years of experience and observation for whatever that's worth. Was it meant to be FOOD FOR THOUGHT? - yes indeed.

I want to see everybody survive this horrible disease and that includes Gino. Sometimes peoples intentions need to be tested.

And yes it IS necessary to kick people in the ass from time to time (but it is is a well intentioned kick).

The reality is that none of us are going to be given back our original life span before we had cancer. We have only been given some time.

Gino, I commend you for taking the bull by the horns and getting the best medical advice you can get. You know that I'm pulling for you and if there is anything I can do for you - I'm there.

Amy - you may wish to re-read all of my posts in this thread - I didn't suggest any particular treatment to Gino. If you are going to criticize me please get your facts straight.

I'm wondering if anyone has heard anything from Luigi (Gino) since his visit to MD Anderson? I'm very curious what they ended up advising and also hoping that whatever the advice was, he is doing OK. Nelie

Nelie,

Sent you a private message.