Hello,

First let me start off by letting everyone know how glad that I am that I stumbled accross this forum in my research. It is hard enough finding alot of information on Oral Cancer much less finding a community that is as supportive as this one seems to be. I have been lurking and reading posts for a couple of days and thought it was time I joined in.

My story is not unlike alot of the ones I have been reading on this forum. I had what appeared to be a cut on the right side of my tongue that I first noticed in August of 09. I had a cavity filled by the dentist in that area and when the novicaine wore off I noticed a small paiful cut, which seemed like at the time may have been a nick from the dentists drill. It was not very bad so I did not bother calling the dentist and just figured it would heal and go away. After several months of it feeling better at times and then worse at times it started to hurt constantly. A return trip to the dentist resulted in a referral to an oral surgeon so that he could check it out.

On 3/23/2010 I went to the oral surgeon who put me to sleep and surgically removed the area. He told me that while of course he was not sure that is was not cancer, it didn't appear to be and that I shouldnt worry. He sent the sample off Emory University Medical Center's Patalogy dept and told me he should have the results back in a couple of days. On 03/25/2010 I received "The" call from the oral surgeon that it was indeed cancer, SCC of the Right Lateral tongue. He gave me the phone number to Emory Hospitals Dept of Otolaryngolgy and three surgeons names who specialize in Cancers of the Head and Neck. I made the call and they were able to get me in for an appoinment on Friday 03/26/2010.

In the meantime I had already been doing quite a bit of research online, weeding through the information that I found, and learning as much as I could. I have always been the glass is half full type of person (and still am despite this). While I knew from my reasearch that what I would more than likely be going through in the coming months may not be the most pleasant experience of my life, it gave me comfort knowing that this can be beaten. My attitude about it all is that I can't change the fact that this has happened to me, but I know that if I keep a positive attitude and encourage those around me to keep a positive attitude it will make a tremendous difference in how I am able to deal with the treatments that are on the way.

My wife (who I love more than anything in the world) and I went to see the surgeon on Friday 03/26/2010. After a physical exam by his intern and then himself, and a review of the pathology report he was very positive and upbeat and said he did not see any reason that I should not be able to beat this and make a full recovery and be cancer free. His practice is pretty much limitied to the treatment of Head and Neck Cancer and the Hospital has a very coordinated cancer care program between the surgeon's, and the other Oncology Dr's that would be involved in my treatment. He said unfortunately he does not always get to give such a positive prediction on possible outcomes, so it made me feel even better that he felt that way.

He explained to me his recommended initial treatement plan. He would do a partial glossetomy with a pathalogist testing samples as he did the surgery until he was able to get clear margins, and also at the same time do a Modified Neck Dissection removing around 30 lymph nodes, to make sure that it had not spread to my lymph nodes. Based on the reseach I had done I agreeed to have the procedures done and the surgery is scheduled for 04/21/2010.

After the Surgery the hospitals "Cancer Team" will meet and review my case, results from the surgery, whether lymph nodes were involved, etc... and as a group determine what other treatments they think are necessary. He did say that he believed that there was a strong possibility that Radiation Therapy would be reccommended, and possibly, but probably not Chemo (unless they find something he is not expecting to find based on current known facts). I felt great comfort in the time he took answering questions and the fact Head and Neck Cancer is pretty much all he does. I went ahead and had my HN CT scan while I was at the hospital and have my pre-op hospital exam tommorow morning. In addition I have an appointment scheduled with the surgeon again on 04/16/2010 to go over any additional questions I have about the procedures and the results of the CT scan.

While I would be fooling myself if I said I was not nervous about the surgery and especially about the possible radiation treatments I must say that I have been able to keep my positive attitude, as I believe your state of mind can make a huge difference in how you respond to adversity. I am more worried about my wonderful wife and two great childern (2 boy's ages 7 and 15). We have explained it to my kids... Not in great detail but the fact that I have cancer and I am going to have to have surgery. To try and make things a little easier on them I told them now they can call me "Cancer Boy", but that they wont be able to call me that for long as I plan on getting rid of the cancer and then the name will have to go. I have also shown my wife this forum, and while there is alot of scary stuff on it, there is even more in the way of support, from what I see as a very positive and strong group of people.

That is my story... you will probably see me around here for a while with questions and then I am sure I will stick around so I that I can provide support to others who made need it in their time of need.

Thanks for being here,

Tommy aka "Cancer Boy"

Tommy,

Welcome to OCF, I'm sorry that you found yourself in this situation but glad that you've found this forum and happy you are here.

Let me first say that I commend your attitude and outlook, you are right in the fact that these are important in dealing with this situation. The only things you can control through this ordeal is your attitude, your nutrition and choosing your medical team...all of which are very important.

To give yourself the best possible outcome, make sure you are getting the absolute best possible medical advice available to you. It sounds like you are comfortable with your choice, however I would advise you to get a second opinion from a Comprehensive Cancer Care Center...just for prudence and due diligence sake, then go where you are most comfortable.

I also have a wife and two small boys (6 and 10) and they've had to endure the experience. It is much harder on them then it was on myself, so making sure they have the support they need is very important as well.

Good luck and best wishes

Eric

Eric,

Thanks for taking the time to reply and for the best wishes. The hopital I am being seen at has just received designation by the NCI as National Cancer Institute designated Cancer Center. One of only 65 in the country. Is this what you are referring to when you mention Comprehensive Cancer Care Center.

Thanks Again,

Tommy

Tommy,

I would check twice about the neck disection. I was stage 1 and was told I did not need a ND after they saw the CT scan (clear nodes). They did hit my nodes with radiation on both sides, but said they would have done that with or without a ND.

Then again I did not have sergury, so we are all different.

Others here have debated this issue extensivly if you want to search previous posts regarding ND's.

Tommy --

Welcome to the best place around for information and support.

As most frequently used on the OCF message boards, the term CCC (comprehensive cancer center) means that the facility uses a team approach to dealing with an individual case, bringing the knowledge and experience from a variety of specialties to each treatment plan -- a "comprehensive" approach, as it were. Certainly the NCI-designated facilities that treat patients would all qualify!

As for the NCI designation: The National Cancer Institute provides funding for research. Institutions choose to apply for NCI designation (the selection is done through a peer-review process), and the term "NCI-designated" primarily has to do with the facility's research interests --- not the quality or scope of patient care.

An NCI-designated comprehensive cancer center means that the institution is involved in research in three areas: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated cancer center concentrates research in one or two of those areas, and a few of these facilities -- like the Wistar Institute in Philadelphia or the Salk Institute in San Diego -- do research only. Further information about the cancer centers program is available here: http://cancercenters.cancer.gov/about/our-history.html

Several people who have posted here were treated at Emory -- do a search on Emory in the search box in the upper right corner of each forum page, and you'll find them.

Welcome Tommy, sorry you have to be here, but I will say the people here are wonderful and helpful and encouraging!

I am scheduled for my 3rd surgery 4/16....petscan tomorrow....would be happy to share more if you want.....pm me.

I really like your attitude, stay positive!!!!!!!!

Carol

Welcome Tommy! What a great positive attitude you have. Glad you found this site. I too had right tongue cancer. I have had three partial glossectomies, and endure radiation. I did have had the neck dissestion. I just had my post treatment scan yesterday. with your attitude you will get through this. We are all rooting for you.

Tommy,

I am going to send you my cell phone number in an email. Since our dignosis was identical, except for being on opposite sides of the tongue, I thought you might like to speak to me. If I don't answer, just leave me a message and I will get back to you ASAP.

Just wanted to point out that today is the 5 year anniversary of my surgery and 2000+ posts later, I'm still here providing support and annoying my friends with my terrible sense of humor.

Welcome to the board, Tommy. I'm wondering if you've had either a C.T. or PET scan to check for spread to the nodes? I'm not very knowledgable but it seems that should be done before going into a neck dissection. Anyway, good luck as you gear up for battle and get ready for a rough (but victorious) fight.

Hi-
sounds like we were diagnosed about the same time- only difference is that mine is on the LEFT side. I have already undergone the surgery and neck dissection- initially was told all margins were clean but 2 of the 10 lymphs they took out came back "hot", so- next week i will begin 30 radiation treatments. I was also glad to find this site. I am not married and dont have children, and by all accounts fairly young (39) to have this cancer, alas here it is.

Best wishes to you- like I said- your story is pretty much the same as mine. I am hoping you will have clean margins and be able to skip all the rest of the fun. keep posting, and nice to meet you

Lisa

Lisa, I doubt this will make you feel better but we have had posters as young as 23 get this cancer. Heck 4 years ago at 58 I was told I was a youngster so unfortunately times are changing.

Tommy (Cancer Boy) welcome to OCF. Im glad you have found this site to help you. You will find lots of guidance here to help get you thru whats coming up. There is also lots of important info on the main pages of OCF. Best wishes with everything.

David,

I did have a CT scan done. I have not seen the results as I will be going back to the Dr. in a few days. I asked the Dr. about the need for the ND and he explained to me while there is only a 30% chance (statistically) that it has spread to my Lymph Nodes he believes we should be agressive in the treatement, either ruling out (hopefully) or catching early any LN involvement. From everything I have read there seems to be a opinons for and against. I guess I would rather be aggrressive with the treatment and catch any LN involment early.

Thanks,

Tommy

Thanks to everyone for the supportive and welcoming comments... I am sure you will see me around for a long time... I definetly know where to come for questions/support/advice...

Thanks,

Tommy

I agree with your docotor get the neck dissection - check as many nodes as possible and be very aggressive with treatment. Far better to be safe than sorry! Glad to see you quit smoking - that isn't an easy thing to do but sooooooooo necessary for your ongoing good health. Remember NOPE. Not One Puff EVER. Keep us posted.

I know the waiting for the surgery and treatment to get going. Let us know if you have questions.

Donna

Welcome Tommy!

Sorry your here but it's a great group of people, ask any questions, someone is bound to know the answer.

Best of luck with the upcoming surgery Tommy. As you can see by my signature I had a similar procedure as have many others here. Feel free to ask as many questions as you like.

Welcome, Tommy - Cancer Boy! I'm sending good thoughts and prayers your way that once the surgery is done your family will not be able to use this name again...EVER! I found this site when my mother got oral cancer and it is such a wonderful place for information and encouragement/support. It's a great idea to introduce your wife to it as I'm sure she will get support and be able to ask anything that's on her mind. I'm a very positive person too and glad to see your attitude is sticking around. It will definitely come in handy so keep up the great work. Sounds like you've done a lot of homework and are comfortable with your doctors - that makes a big difference as well. Take care and B POSITIVE!!!

Tommy,

It was great speaking with you the other day. It's terrific that you know as much as you do, before going into treatemnt. Many of us learned after treatment and it is much better this way. It is a big help to know what lies ahead and your positive attitude will certainly be a bonus.

Again, I wish you good luck on the 22nd and I am avialable anytime before or after your surgery if any questions pop up.

Hi Tommy,

Just wanted to welcome you to the site as well. I know this was great resource for me as I recovered from my encounter with oral cancer. I too was stage one SCC on the left lateral tongue and had similar treatment. For me, since the tumor was very early, the partial glossectomy was enough. I'm three years out and all clear. Best of luck on your journey, may it go as well.

Nancy - Tommy has already introduced me to the site and I have been "lurking" until now and have already found it a comfort. I have been reading threads through tears (both from laughing and crying I might add). My head is still spinning as I try to absorb all the information and come to terms with reality. It's all still sinking in and I'm still fighting with the self pity "why us" attitude so I'm not nearly to the place that Tommy is. I do, however, share his warped sense of humor by laughing at him walking around the house saying "I'm Cancer Boy" in his best super hero voice or using the Cancer boy excuse for accidently taking up two parking spots.
The site has already provided information and comfort and I expect that I will be lurking around quite a bit. Thanks to everyone for providing Tommy such a warm welcome.

Mich,

You don't have to lurk, There is a whole caregivers forum custom built just for you.

Tommylee certainly has the right attitude. Keep in touch, it will make the road easier for you I think.

tommy and mich,
welcome. tommy, i love your attitude. yall are both in for a long hard road, no one on here will ever sugar coat anything. they will tell it like it is and offer tremendous amount of support. this site is a life-saver!! keep us updated!

Tommy,

as many here, I'm living a very similar story. It's a great place to find support, advice, resources and tons of information. I just wish we were all hanging out at a picnic and discussing something less dreadful.

Best of luck with your treatment, and don't shy away from asking anything, we've all been here, and we've all traveled the road you're about to embark upon. It's scary, it's not easy, physically or emotionally, but I thank god every day for coming across an amazing group of surgeons, oncologists, nurses, speech/swallow specialists, and support from family, friends, and people here.

One piece of advice - never turn down anyone's offers to help with anything.