My name is Frank Gagliardi. Was diagnosed in march. Not sure on a phase though. Oral cancer whith some that hit a lymph node. Had my surgery this past tuesday and was told they got 100% of the tumor and also pulled the lymph nodes that were affected. Top of the chain was positiove and the bottom was negative. My biggest concern is that everything i have been reading is basic and says that if the cancer hits the lymph nodes you pretty much have 5 yrs left. The doctors do not seem concerned and say we caught it early. Does anyone in here have or have had this type. I would like to hear from anyone on this. Thanks and sorry for ranting on.

Frank,

First of all you are not ranting, your doing what this board is made for; asking questions. Stick around and you will get as many answers as you can absorb.

Second: The fact that this has hit the lymph nodes does not put a time limit on you. You will hear from many hear who have been where you are and others who are dealing with more advanced stages of this disease. Some will have the 5 year mark behind them and others will be lookng toward that mark and beyond.

Third: Fill in the signature line (like mine below) and we can help answer your questions better. There is a thread for new posters, take a look at that.

Sorry to have you hear but happy to help you get through this.

This board is full of people alive and well, that at the time of discovery, had node involvement. I had positive nodes on both sides of my neck (very advanced to have that happen) and I am still here 12 years out. You need to read the page on staging on the main web site, here http://oralcancerfoundation.org/facts/stages_cancer.htm and you need to have your doctor explain to you what stage you were at time of initial treatment. This pretty much dictates treatment protocols, using the NCCN guidelines that you should follow.

Then you need to tell us if you were treated (and treatment planned) by a single doctor or doctors all of one discipline (ie surgery) or by doctors from multiple backgrounds. Those that have the best long-term results after this thing bites you, usually have multidisciplinary treatments involving radiation, chemo, and surgery in some combination, especially once you have it progress to cervical node involvement like you. My guess from your post is that you were initially seen by a surgeon. I would strongly recommend that now that you have gotten through this part of it, you have consultations with doctors at a comprehensive cancer center that are trained in the other disciplines so a determination can be made if this is all that you need, or if your treatments need to continue. And Kelly has it right... this is the place to come with all the questions and frustrations, those are the very reason it exists.

Hi Frank--This is the best site there is on the net concerning or issue(s), nothing else like it. OCF is a wealth of information with very kind people to help--people that have been there in your shoes.

Use the link that Brian provided for you, it will help.

I'm another Stage IV with nodal involvement and I'm 4 years out, well almost.

Tell us more about you, where was your primary, were you a smoker?

Hi Frank,
I was a stage IV with 3 nodes involved. I am a very sassy, talkative eight year survivor and looking forward to many, many more years!! I think you read the wrong book!

Oh Frank, I know exactly how you feel. I was diagnosed with a cancerous tumor under my tongue last May. An oral surgeon removed it easily enough, but the margins weren't clear in the pathology report. So I was told I needed a partial glossectomy and no one would know how much tongue they would have to take until they were in the operating room. They would cut until they got clear margins. I thought that was nerve wracking enough but I awoke with less of my tongue gone than I had had nightmares about and was told they "got it all".

About a month later I had a bump on my neck that we all hoped was just a swollen lymph node that would need antibiotics. But to be safe I was given a biopsy and lo and behold the cancer had spread to my lymph nodes. I, like you, started reading and must have read the same things you did that basically gave us a death sentence for cancer spread to lymph nodes. I went so far as to consider doing no treatment if I was a "goner" anyways. Thank goodness for this site where I got so much encouragement to go forward and not give up. There are people here that have gone through so much more than I have that I feel like a cry baby now just thinking about giving up. I finished my chemo and radiation January 22nd, 2010, with the help of everyone here.

I don't post much, just read about all the people I admire so much here. I don't post because I just have no knowledge about oral cancer except the two surgeries I had and the radiation and chemo. My family was supportive but they really didn't understand what I was dealing with and continually compared me to my sister who had breast cancer and had a mastectomy and is cancer free. She had no radiation or chemo. They just didn't even grasp "the mask" until I brought it home in January. It was the people here that gave me the support I needed and understood. So please ignore the grim statistics that say how poor the survival rate is and listen to the real people here who are proof we can survive.

wow, thank you very much, everyone here. I can see i need to keep my mind open about this and need to get more information. I see both the surgeon today and the neck & throat docs for my follow-up visit. I beleive i am getting the pathology report today as well as with the stage.

Docs were pretty stumped with my case as i do not smoke and only drink socially. 36 yrs old this past march. Only thing that it seems to point to is bad wisdom teeth that i have had for quite a while.

My surgery consisted of 2 cuts on the tongue which is alot less than the surgeon thought they would need. The first cut was all tumor and the second cut was 100% clean. The neck was an upper hyoid, sorry for mispelling, dissection. Two cuts on either side of the neck to check the upper lymph nodes. Right side nodes top chain tested positive while lower on the same chain tested negative. left side was totally negative. I will get some more answers today.

Thank you for everyone here for sharing their experiences and the wealth of information.

Frank

Bad wisdom teeth do not cause oral cancers.

Some people come to it from the HPV virus, tobacco use, heavy alcohol consumption, some people have no identifiable lifestyle risk factors at all, and it is assumed that genetics played a role in their coming to the disease.

You could have them test the tissue in pathology for HPV16 the virus, (if they won't or do not have the ability to, there is a link on the OCF main site HPV page to the Johns Hopkins lab that will) since they have to keep that sample 7 years by law, and you have eliminated tobacco and alcohol.

Where are you being treated?

I'm also from Pennsy, from outside of Philly.