Hello. I am a 52 yo female and have just been dx with scc of the oral tongue on 2/13/13. I noticed a very sore pimple like thing underneath my tongue on Dec 27. I didn't think much of it as I have suffered from oral erosive lichen planus for years (which ironically has now cleared up) and am used to odd sores popping up and then disappearing in my mouth. This one did not clear up but grew at an alarming rate in about a month. I got it biopsied and it came back moderately differentiated squamous cell carcinoma stage 1. I had a CT done as well and so far there is no involvement in my lymph nodes. My ENT said that there were 2 treatment options. One was surgery with radiation and the other was chemo with radiation. My ENT recommended chemo with radiation as he said I could always opt for surgery later. If I choose to have surgery with radiation, my ENT recomends that I have it done at Wake Forest University. I am going on 2/20/13 to Wake Forest for a consultation or second opinion. I have no idea which option to choose as both options have valid points and valid drawbacks. Of course I want to choose what has the highest survival rate, but was told they are about the same with surgery being only slightly higher. I dont know how much slightly is. (should have asked but I was reeling from the dx)If I could be cured or go into remission and keep my tongue that would be nice, but I dont want to let fear of the surgery and rehabilitation, influence my decision and lower my odds. I also dont want squander valuable time trying to decide. I will be armed with more info at least after my consultation. My knee jerk reaction is to cut this thing out NOW but knee jerk reactions arent always the wisest. Also since my biopsy, my tongue has become numb at the tip and I dont know what all that is about. when I extend my tongue it feels as if there is a string tied to the tip holding it back. All of this happened as soon as the anesthesia wore off after biopsy. Forgot to ask ENT as I was so stunned by diagnosis. Sorry my post is so long. Thank you for listening.

Welcome to OCF! Im very glad you have found the forum to help you. Its full of members who will give you tons of support along with providing important info to help get you thru your upcoming treatment.

The best thing to do is go to a top rated cancer center. It has been proven to have better success in treating patients. If your doc is suggesting you go to a specific facility for treatment, do NOT go there for your second opinion as they are affiliated with that doctor. Usually a doctor will suggest radiation (with or without chemo) as the second course of treatment not surgery. Having surgery after radiation makes healing much more difficult and has many more complications operating on radiated tissue. A top US cancer center will use a team based approach where you will have a whole team of specialists who will get together to make up your treatment protocol. What happens without this team based approach is that surgeons always suggest surgery, radiation docs will say you need radiation both making it seem like their way is the only way. See why a cancer center with a team based way of doing things works better? Plus being treated at one of the top cancer centers will give you better chance for survival. At stage I it was caught early so should be easily treated.

Here is a list of cancer centers, please look it over and try to get into one of these top facilities. Many treatment centers will have the words "cancer center" in them but they are NOT the countries best facilities.

Top Cancer Centers

The numbness could be from swelling or it could be something with the nerves in your tongue. When it heals, hopefully it will go back to normal.

Please feel free to ask questions. We have all been where you are, new and afraid of what comes next. The unknown is always a scary proposition especially when facing serious health problems.

I can also send you the link for the proper protocol for handling oral cancer cases. Its designed to be specific for each scenario and will help you to understand what a correct treatment protocol would be for your situation.

Best wishes with everything!

Thank you Christine, for the warm welcome and information on the top cancer centers. I would very much appreciate it if you would send me a link for the proper protocol for handling oral cancer cases as well. I am so grateful that I found this site early on and am grateful that it was created as it is so reassurring to be able to connect with other people who have been through this. It is truly a blessing and great support group. Thank you again.

Always glad to be of assistance, Monica You have now found a second family.

Here is a link to the main OCF pages where you can read about treatments.

OCF main pages, Treatments

This link should keep you busy for a very long time. Its packed with info! If you click on the Guidelines tab on the right of the page, you will get to where you can look over the NCCN guidleines which is what your treatment plan should be based upon.

Hi Monica - I am sooo glad you found this forum and that you were diagnosed early. My son had the same type of SCC and is doing just great now, 6years later! His cancer started with a small pimple under his tongue too and by the time he saw the ENT, it was a stage 2. I noticed you are in Tennessee and I am too, close to Knoxville. My son was treated at the University of Tennessee Medical Center and I can't say enough about the care he received with Dr. Eric Carlson and the other doctors on the team who treated him! Paul had surgery and radiation. Dr. Eric Carlson is known for being "very aggressive" in his treatment. He strives to make sure the cancer does not come back and so far, Paul has been cancer-free. It really is a good idea to find out everything you possibly can so that you can prepare yourself with all the questions you have. It helps, too if you can have someone else go with you to appointments. A nurse friend of mine and my daughter and I went to many of Paul's appointments. Having an extra pair of ears makes it easier to check back with each other and make sure you understood all the information and recommendations you get at the appointments in order to make the best decision for you. You can also write down your questions and bring them with you to apppointments just to make sure everything gets answered. Let us know how you are doing.

Hi Monica,

I was stage 3, and my tumour grew very fast as well. Because of the size (5 cm when removed) surgery was required, and I was told chemo and radiation would be necessary due to a positive PET scan for lymph nodes.

So they took a little over half my tongue, but the nodes came back clear. They are watching me closely for recurrence but for now I have not had to undergo radiation. Based on everything I have learned about radiation (mostly from here), if I had to do it all again and had a choice, I would opt for the surgery. There is a chance radiation would not be required once they removed the tumour (as with me).

It has not been easy, but I was back working in less than a month, and if you didn't know me before, you wouldn't think I had surgery. My speech is about 90%, and I live my life normally albeit with some adjustments.

Whatever you choose, there will always be a nagging fear of recurrence, so don't let that dictate your treatment. Do what you feel is right in consultation with your team, and know that we will be behind you.

Good luck!

Welcome! In addition to the above, some CCC offer Transoral Laser Microsurgery for small tumors in the mouth, tongue, oropharynx....This minimally invasive procedure preserves function, and does not interfere with any future surgery or radiation options, if ever needed, to my understanding. Good luck with everything.

Monica, welcome to the family. Sorry you have to be here but now you're one of us. You've got some great advice from some of our most knowledgeable people. Going to a CCC is probably the best thing you can do and will provide you with the greatest number of options.

My thoughts are with you.

Hi there. Welcome though its not a club you want to join unless necessary! My tumor was similar, but not as aggressive, and despite having biopsies, etc... I'd had it for some time. That said, surgery is a very easy recovery compared to radiation. I opted for surgery as my surgeon is the top guy at the top ccc in Canada. Despite my surgery being 14 hrs (they took a 3rd of my tongue - 40 lymphnodes - despite my having 3 negative scans - and reconstructed my tongue) I was out of the hospital in 10 days and in Mexico a week later eating and speaking ok.

There are two types of scc - HPV related and non HPV. Oral tongue is usually non HPV - HPV positive scc responds well to just rads and chemo, non HPV is usually treated with surgery first (as it can be very aggressive, and move quickly and microscopic cancer can move into the nodes and travel quickly to distant locations,) if you have surgery, after your post op biopsy your dr. Will decide if rads and chemo is called for. Some do suggest it as a precaution (with good reason - as I said it can be highly aggressive and often times the surgeon will think he got it all, only to have a recurrence in the nodes this is why they remove nodes too despite having an clean neck scan - factoid - microscopic cancer doesn't highlight on scans )
Anyway, I had the works. And recovery from surgery was far easier!
Best of luck and do see someone at a ccc.

take care

I want to thank every one of you for taking the time to respond to my post. It means so very much to me! After much thought, I am going to go with whatever is recommended by a multi team at a CCC. Now that I think about it, I asked my ENT what he would do if it were him and he told me chemo/radiation but he gave me info and access to all options. The chemo/radiation seemed less scary overall but I cannot make a decision based on fear. Anne-Marie, I live in the tri-cities, so I am relatively close to you. Your story about your son Paul, Tina's story and David's story all give me hope and positive thoughts which is so important! Tina, you encouraged me about the recovery aspect of having to have a portion of my tongue removed by sharing about your recovery times. I have a low functioning autistic son who is totally mute and I am his voice! I also want to thank you Paul about the info about the microsurgery. I am arming myself with knowledge. My mother, father and sister live in the Birmingham, AL area and I am going to call Monday to find out about getting a referral to UAB Hosiptal as it was on the CCC list that Christine sent me (Thank you Christine!!). My question though is this: Do CCC's specialize in the types of cancer they treat? I know they all treat all cancers but in other words, if you have breast cancer is it better to go to Houston for example, or pancreatic is treated more successfully at Duke Hospital etc. If all things are equal, UAB would be perfect for me. I hate to waste valuable time by getting another referral and appointment, but the last one only took a week. (I'm kinda paranoid cause I dont know at what point they spread. They could be contained one minute and running loose the next is my thought. I guess we all think that though. We all are concerned with that). I hope to someday soon be on here as a veteran and be a source of inspiration, encouragement and solace to other people just being diagnosed. You all have given me so much comfort and helped me by knowing that I am not alone. By knowing that there is life after a cancer diagnosis. I am glad to see by your signature lines that you all are doing well even though I know it was a fight and a battle. (still trying to navigate the shorthand on the signature lines though). As horrible as all of this is, I feel that it has actually changed me inside for the better. I will never again take any day for granted and I am thankful just to be alive, today!