Justlilomee,

Hi and welcome. I think you will find that this website has the most accurate and up to date info you will find anywhere. Go back through some of my posts. My mom had stage 1 SCC diagnosed back in 4/03 her ENT swore he got everything with clean margins and did not order radiation. Now she has had to endure a second surgery this one included skin graphing and a lot of unnecessary scarring and then the radiation & chemo and it has been a long drawn out process which we feel she could have avoided if she had received the radiation the first time around. Her mouth has been cut into many many time which makes eating a nightmare now. I know there are people out there who just got the surgery alone that are doing fine today but to me the radiation would have been reinsurance that all that cancer was gone.

Gary was just being honest. This is not the kind of cancer you want to mess around with...

I will be keeping you in my prayers and you too Lynn.

Danielle

Danielle
I know he meant well,but right now,I dont need reminding of the dangers of smoking.I already knew everything he said anyway,I have been reading all about oral cancer and the dangers of recurrances for weeks now,all I wanted was to know if anyone here had only surgery and if that was enough in some cases.thanks

There are people on the sight that just had the surgery. Lisa in K's just celebrated her cancer free year from her surgery and she only had surgery. In my mom's case she never smoked and has never been a heavy drinker and she still got SCC at age 55 so go figure. One thing I can tell you for sure is that you have to be positive and know that you can beat this. By the way my sister still smokes (I've never smoked) but from what I understand it's a pretty tough habit to break.
Take care,
Danielle

Hey Justlilomee,
My husband had 1/3 tongue removal end of July, modified neck dissections both sides. I don't think they took many nodes, but all was negative. We were told no radiation necessary by his oral surgeon. 4 months later he had a swollen gland that turned out to be an agressive cancer tumor, had a radical neck dissection and they couldn't get all the cancer. He has finished 8 weeks of chemo/rad and on the 14th he will have a CT scan and MRI to see how well the treatments affected his cancer. His sore was bigger by the time of diagnosis (about a quarter size) than you had, but no one ever said he should get radiation...now we sure wish he would have had it right after healing from tongue surgery as it might not have gotton so evasive as a recurrance (or met from the tongue). Just might want to get more opinions...we didn't as we were also new to all of this and I have learned so much from this board about questions to ask, etc. Don't take things to seriously, as I am a Christian and have gotton some slack for some of my postings...just realize everyone is really just trying to help.

Prayers are with you!
Debbie

Justlilomee,

I was diagnosed with stage 1 SCC of the tongue on 5/23/03 and had a partial glossectomy and modified neck dissection on 7/1/03. All 46 nodes that were examined were negative for canacer. Before surgery, I had a PET scan and a Cat scan. I was scoped. I saw three head and neck surgeons (ENTs) for consults before my treatment.

I am a dental hygienist and I knew I had something going on but had a very hard time getting diagnosed. Everyone who looked at me, including a head and neck surgeon and serveral dentists and hygienists said it was nothing. The diagnosis scared me to death because of the knowledge and experience I had with the disease on a professional level.

I pursued a surgeon who would remove my lymph nodes on the affected side because that is the way this cancer spreads. I did not consider radiation because I didn't want to deal with the long term side effects (I am only 42) but there are lots of people on this board who would argue over that with me. If I were you, and having just gone throught it myself, I would not opt for just the tongue surgery. The neck dissection has made me feel much more confident about my long term survival. Find out where patients are being treated aggressively at a comprehensive cancer center near you and go for a second opinion.

Justlilone,

Please try not to be defensive. Some of us have been to hell and back because of casual doctors and I must admit the attitude they have towards your cancer seems pretty laid back. I spent 7-8 months from doctor to doctor complaining about a hard lymph node that eventually got as big as my thumb. I went to an allergist, an oral surgeon, an internal medicine doctor, a plastic surgeon, a family physician, etc. They all told me not to worry and keep taking antibiotics. I will be frank with you, I am very angry, not at you but at the doctors treating you. So many people have died while the doctors had a wait and see attitude. I re-read Gary's post many times and I don't think he was really doing much more than complimenting you on making the decision to quit smoking. I have treasured so many of his posts and the great contribution he has been on this forum.

All that said, this is a very aggressive cancer and you find a comprehensive cancer center to get the real experts working on your peace of mind. I had an inside line in that my mother had struggled with ovarian cancer 1999 and 2000 and her terminal stage was in my house. This got me aquainted with the experts in Dallas. When my diagnosis came back as cancer, I got on the computer and sent emails to everyone I knew and the resounding recommendation was a list of who I should have on my oncology team and the rest is history. I have had to push, ask questions, pull, tug, irritate, etc. It helps them when the head of one of the best OB/GYN oncology groups in this country tells them the nickname he gave me back in 2000, McGuyver. I am not sure if I spelled it right but he was the guy on TV that found a way to make anything work and was an inventor of sorts. I stay on them until I have peace of mind that I have done everything possible with them (or somebody else).

We are all part of a very special "club" after having been through difficult times because of our disease or someone very near and dear to us. Sometimes even us AND someone very near and dear to us. WELCOME to the club! You have earned your spot and you can lean on any of us as much as you want. Nobody should ever have to do this alone and you are no exception. I try not to get too religious with people until I know they are comfortable with it but God has placed you in this path and all of us are here together for a reason. Whatever you need, ask and it shall be given to you!

God Bless you and I want you to have peace of mind! If you don't mind, I will pray for you every day until you ask me not to.

Ed

I am not in favor of a surgical only solution. In 26-29% of stage one and two cancers we know from published data, there are occult (not seeable) mets to the cervical nodes of the neck. This is not speculation. These are not visible to our current scanning technologies for the most part. So I would want treatment from someone that interfaced with doctors from other disciplines like radiation oncology. Some here have had prophylactic removal of the nodes on the same side as the cancer surgically, but at bare MINIMUM, these docs should be doing the proper scans to see if it exists anywhere else in the local/regional tissues as well as the aero digestive tract in general. That means MRI's and CT's with contrast. Don't settle for wait and see, if this comes back as a cervical metastasis a year from now it will come back with a vengeance, and eradication of it at that time is complicated, as it has had a chance to prosper in the lymph system of your body. This gives it access to remote regions. So if he has clean margins, you essentially have a one in four chance of having it in your neck and not know. Get the scans done. Then make an educated decision with a doctor of another specialty to evaluate if you wish to pursue this initial occurrence further. Please note that as a smoker, you are at higher risk for what is called field cancerization, and that alone should make a doctor want to evaluate other locations for possible signs. As to Gary's comment, don't have too thin a skin.... we're re all the architects of our own situations. While Gary is a reformed abuser which can come off as criticism sometimes, his information is very sound and his postings have helped many people. I got that you are proactive in dealing with the problem that has come up. God knows if we came across as judgemental on smokers, we'd probably have few people left on the boards.

Gary,

Your post reminds me of my favorite line from a favorite Jackson Browne song, These Days;

OK....we've discussed posting ettiquette and feelings enough. It could have been more sensitive. Let's move on the the real issues of getting the best treatment and follow up possible now.

wow,just came back and thank you for so much info and support.I know from all I have read and my own peace of mind,that I need a more aggressive approach than "lets just watch you".I am going to my ENT doc today and tell her I at least want a CAT scan and tell her my worries.If she isnt agreeable,there is a cancer center here that I will go to for another opinion.God knows,I dont want to go through radiation or surgery again,but I also know I want to survie this.I prayed to God that I didnt have cancer,but I do,now I just pray that I can survive this.For the person who said they would pray for me,thank you!! I am very close to God,as prayers are the only thing keeping me going right now.