Hello. My name is Elizabeth and I learned of this website through my sister. She loves the computer and spends alot of time on it so she has researched alot about my cancer and discovered this website and this patient forum. I decided to try it even though I am not on the computer very often.
Anyway...I was dignosed with tongue cancer 3 years ago(2003) and underwent surgery to remove it. I had a pet scan at that time and also was told by my ENT to visit an oncologist which I did. He did not do further treatment after the surgery because they felt that all of the cancer had been successfully removed and had clear margins so I healed after a short period of time and tried to get on with my life. I did experience pain and tenderness at times but nothing to cause great concern. I had checkups and all seemed to be going well until around Thanksgiving,2005 I noticed some white patches on my tongue(left lateral) near where I had already had cancer removed. I monitored it daily and prayed that it was nothing to worry about but deep down I knew it was probably back. The first time it showed up differently though so I really wasn't sure. I made it through the holidays until New Years weekend and finally decided to tell my husband.
Of course we decided to go to the ENT and they saw me on Jan.3,2006. It turns out that it had come back and I am recovering from my second surgery of the tongue. This time I feel strongly that maybe I need to get more treatment but will have to wait until tongue heals more. I have an appointment with an oncologist for Feb.10 and am supposed to see what he thinks should be done. My ENT said he will possibly reccomend radiation or implants. I just turned 42 and my ENT does not understand why I have had this cancer. I do not fall in to the risk categories for this type of cancer and cancer doesn't run in my family. Is there any one out there with similar problems that has any ideas??

Elizabeth,

Welcome to the OCF forum. I'm glad your sister found it and was able to put you in touch with us. You'll find that there are quite a few of us who didn't seem to fit the standard "risk profile", but who got some form of oral cancer anyway.

I was diagnosed with tongue cancer at the age of 39, after a long delay when a couple of my doctors felt that my symptoms were nothing serious, as I had never smoked and was a social drinker. My surgery (partial glossectomy and modified radical neck dissection) showed clean margins, but the oncology team at my cancer center felt strongly that I needed to follow up with radiation to attack this disease with everything possible. My pathology reports indicated that the tumor had the potential to be fairly aggressive, and I think that was one of the factors that guided their recommendation.

Is your oncologist affiliated with a comprehensive cancer center? In a case such as yours, where there is a recurrence, I think it's especially important to have the full input of an oncology team at a CCC, where they can evaluate your situation and look at it from all sides -- surgery, radiation, chemo -- and try to come up with a treatment program to get rid of the cancer once and for all. The radiation/chemo part can be really tough, but if it's what it takes to do the job, it's worth it and there are many of us here who can do our best to help you through it.

Please keep us posted on what you find out, and you'll find a lot of support here.

Cathy

An ENT is not trained in the same manner as an oncologist. An ENT is trained primarily in surgery, which clearly is what your doctor did. Thjat he did not send you immediately thereafter for a foloow up consultation with a realo oncologist and specifically a radiation oncologist for an opinnion the first go around if there should be additional treatments leaves me feeling he did a disservice to you. Only in the earliest cancers, such as carcinomas in situ would most consider surgical only solutions. I suggest that you get a consultation with someone affiiliated with a cancer center, that has both a radiation and chemo oncologist on staff and has a history of treating head and neck cancers. The top 50 centers in the US can be found on our resources page under the link titled "best hospitals." Those that have the lowest chances of recurrence are those that are found at early stages (you don't say what stage you were, or if your doctor even staged you, which is one of the primary determiners of what treatments are appropriate), and those that hit it with the biggest hammer the first time around...ie. surgery and radiation. In more advanced cases - some two's, all three's and fours, concurrent chemo with the radiation, yeild the best results and would conform to the NCCN guidelines. These guidelines can also be found on our site in detail if you are interested.

Elizabeth - Its so good that you found this site. We are all learning quickly that many docs do not treat this disease (condition) aggressively enough. Their hope, I am guessing, is to put you through the least invasive treatment possible - and that is a good thing. But oral cancers are really hard to treat and require real expertise. It is my belief that your health depends upon you finding a group of docs experienced with this type of cancer.

There are lots of good oral cancer docs out there, but they can be hard to find. The CCC outfits listed at this site will have the experience you need, and they can likely help you find doctors closer to home who can help carry out your treatment. It DOES make a difference what docs you talk to.

Some people speculate that many of the fatalities from this type of cancer were precipitated by incomplete treatment. Said another way, head/neck cancers must be very aggressively attacked with all the 'weapons' in the inventory - to keep them from coming back. The medical nostrum of "least invasive treatment" is very dangerous with our type of cancer. Please, seek additional opinions from other experts. It is NOT too late for you to do so. Hey, we here are kind of the Home Depot of the cancer crowd: "You can do it. We can help."

Many here are with you. Fight hard. Be strong. Tom

Elizaebth, What disturbs me is that it sounds like you weren't doing regular follow-up checkups with your ENT when the cancer recurred. Or did I misunderstand that? He definitely should have been keeping an eye on you if it was decided that you didn't need radaition or chemo after the first surgery. Anyway, I agree with everyone else that at this point, you need to get to a CCC and get advised about your treatment there. It's quite possible that you can GET the treatment closer to home (which is what I did), but you need the opinion of experts about what that treatmant should be.

Lots of us are here to give you support through whatever you have to go through.

Nelie

We all wish you well and you are in the thoughts and prayers of my extended family.
Darrell

Thank you all for your comments. I am grateful to have found this site and already feel comfort from sharing with you & getting replys.
I may not of made myself clear in the intro but I did go to an oncologist(not sure if it was a radiation oncologist)the first time prior to the surgery because the ENT referred me to him. He decided after the surgery that radiation would not be necessary. Now I am going to see a different oncologist this time that is at the hospital where I had the most recent surgery. I will check if it is a CCC. I only know that it is a Cancer Center so I need to do some more research on that and on this new doctor I am supposed to be seeing in February.
By the way, I did go for routine well check ups with my ENT and was also monitored by my dentist. The white patches showed up rather suddenly and I watched it for a little while before going back to the ENT. I know that I probably should not have delayed at all but am human and obviously prone to mistakes.
Again, thank you for all of your support and I will be learning all that I can to educate me and be able to help myself in this treatment.
Hope you are all doing well today.
God Bless!

Elizabeth, I'm glad also your sister found this site. I also had recurring tongue cancer. Removal of left lateral tongue SCC in early Nov 03 with little impact to speech or eating. Pathology showed clear margins with no node involvement. No radiation or chemo was recommended. Around Christmas 03, I noticed a small irritation this time at base of tongue. Due to holidays, didn't get a diagnosis until Jan 12, 2004. It was SCC again! By the time surgery was performed in early Feb 04, it had grown so extensively as to involve the pharynx. Surgery 12 hours with subtotal glossectomomy and flap recontruction. Today I have no working tongue, speech is hardly understandable even with a prosthesis, and I can only take liquids and pastes through an oral syringe after a year of swallow therapy. Still have PEG tube. I'm still clean but will always live with the after effects of the second glossectomy.

Why am I telling you all this. To advise you to see an oncologist ASAP. I'm glad you have not had the agressive type SCC I had but I strongly urge you to get treatment options now to minimize further recurrence. Radiation and chemo are tough but I believe I might still have at least a workable tongue if I had sought the advice of an oncologist in 2003 after surgery.

Jim