My name is Angelia and I am new to this site. I am just beginning this new journey in life. In February, my dentist found a lump underneath my tongue. I went to see him because of this lump. He immediately said I needed a biopsy. I went to an ENT and was told I did not need a biopsy. I wa sput on antibiotics and sent home. I was told that he would do CT scan if the antibiotics didn't clear up what was going on. Well, guess what they didn't work. I got the CT scan and nothing showed up except for a sinus infection. I was then treated with more antibiotics. All they while this thing in my mouth was getting worse. I decided to go to an oral surgeon and was told yet again it was just a sore and to come back in a month if it wasn't better. After several opinions most said it was just a mouth sore and would heal up. This sore kept getting worse and never healed. I eventually began to have severe ear pain. I went to an ENT that initially saw me and he agreed that something had to be done since it was not getting any better. So on April 30th I had surgery to remove this sore, that my ENT said was just an ulcer, but was going to send it off just to be on the safe side. On May 4th I got that dreaded phone call that it did turn out to be cancer, and it was not completely excised. So on May 7th I went in for another surgery to have the rest of it removed. At this point I have been told that it is gone and will be having a PET scan in 6 to 8 weeks as soon as my mouth heals from the surgery. I have lost a good portion of my tongue and am still so shocked by all this. How do I know that it is really gone? How do I know that it has not spread? Why did it not show up on a CT scan? How did this happen? I have never smoked a day in my life. Thanks.

Angelia, I had so many scans and I mean aty least to of each before and after surgery to remove part of muy tongue and a neck dissection at Ohio State James Comp. Cancer center. I was told afer the 1st surgeyr at OSU by the Dr that he had gotten it all. Oh yea he did and after 2 more scans he said I need more surgery, more tongue for the garbage pail and more biopsies to follow that.. I was told I didn't need rads or chemo but after that surgery I was told I did need both of them I came back near home and went to the Oncologist that had been arguing with the Dr at OSU saying I needed ti and should have had it already. LOL Well I had to have my teeth removed for rads and chemo and after rad seed impants in my tongue. It has been one tough road and I wish that some day some of this pain leaves and is replaced with taste and saliva. THere are more things than cigarettes that cause it HPV is one of ther main causes. I as told that mine as just a unique cancer whatever that is. I have barretts esophagus too and go for perop tomorro at noon and then go the following week for the scope and biopsies for it. Don't worry about it but take it one day at a time and see what you feel like. Be positive and upbeat.Next time you see that Dr,, just smile at him and make him wonder if you are going to hurt him or wonder if you are just happy. LOL

Hello Angelia,

I would go to the nearest cancer center.

Thanks for such a quick reponse. I am only 31 and have two small children. I am so scared as I have seen my grandmother go through cancer and lose her life to it this passed year. I never thought I would happen to me. Now it has and I just don't know how to cope. I do not even know how to talk to my kids about all this. All they know is mommy has a sore in her mouth that had to be removed. It will be awhile before she can talk clearly again. Another question, how long should I take off work? I plan on going back tomorrow because i am out of sick days, but talking too much is very painful. I am trying to hold it together for my kids and my husband since he is so busy too. I am pretending that I am handling all this just fine, but I just can not get the knot out of my stomach. You know?

you're surrounded by a bunch of "we knows"...this is the best site for OC...Please get into a proper cancer facility...this site has a list of the best ones in the country...stay strong hang tough

Angelia,

I am so sorry you are here, but here you are. When I was first diagnosed things really began to spin out of control for me with no help in sight. Finally I reached out to someone who had a same cancer. With her help and advice I realized that I needed to be my own care manager. I needed to take charge. Remember you make the decisions and in order to do this you need to acquire information. You have found a valuable tool here, read all the data you can on the OCF main page such as facts, treatments etc... Also look for comprehensive cancer centers (CCCs)near your area. That is where you will get the more complete treatment.

As far as work goes it's what ever you feel up to, but keep in mind you may need further treatment such as radiation therapy and/or chemo therapy. Hss anyone talked with you about additional or concurrent treatment options?

This is a great forum and you will find lots of support here, but you'll need additional support from your husband/caregiver too. If you can guide him here maybe he can help with learning and getting smart on all your options/choices to be made.

Hang in there and we're here to help.

Tim

Walkinlite:

Run, do not walk to the nearest cancer center!!!

Get a slide of the biopsy and a hard copy of the biopsy report, copy of the CT scan and report. You may also get a copy of the CT pictures. (I did this with my PET scan). Take all this to a cancer center.

What you need is a staging of the cancer (Stage: Tumor,lymph nodes, metastis) This info can be obtained (1) biopsy report and (2)PET scan. Studies have shown that a PET scan is the best way(other than a biopsy)to confirm a cancer. The PET scan will be able to tell you if there are cancer cells remaining.

Explanation: Cancer loves sugar and absorbs more than healthy cells. The PET scan reads the UPTAKE of sugar. The amount of cancer activity called hypermetabolic activity is measured at a SUV reading: 0-15/20 shows the amount of activity in an area. The PET scan should also give you a measurement of the tumor.

Staging will determine other treatments: radiation and/or chemo.
Hopefully, it is in an early stage and will only need surgery.

BTW: I'm only another patient, but I think that a oral surgen will be able to repair your tongue.

I'll keep you in my prayers. Personally, I wouldn't wait 6-8 weeks.
No need to panic, but the sooner, the better.
Sandyst

Welcome to OCF, Angelia. I know you must be very afraid after everything you have gone thru. You need a support system to help guide you thru this. Please feel free to ask questions and we will help you. A second opinion would be a very wise decision as is going to a cancer treatment center. Surgeons do surgery, you need to be seen by other doctors who will deteermine if you need further treatments.

Its especially scary for you since you lost a close family member to cancer. Your age is on your side, you can get thru this much easier than someone older. Its good your children are young, they will adapt easier to this. What type of work do you do? Is your employer flexible with your hours and job duties? There is the FMLA act which entitles you to 3 months of sick time per year for things like this.

Best of luck with everything.

I am a special education teacher. I love my job and would not be able to survive if I didn't have it. The school has been very good to me through this whole ordeal. We have had meals brought to us almost everyday. I have two more weeks until school is out for the summer. I meet with my ENT next Wednesay for a check-up. I have whole list of questions to ask, and my mother does also. She is emailing me all her questions this weekend so I can ask the Dr. as well. I also find that I have so many questiosn spinning through my head I do not even know how to get them out. I do have two grandfathers that are a cancer survivors. I do take comfort in that. The worst thing so far is that I also had strep throat three days after surgery. I caught it from my 6 year old. I wa snot even thinking stay away from him before surgery. I went into mommy mode and wanted to make sure he was okay. This has been the hardest part of the whole thing is that I have not been able to play and talk to my kidds for very long periods of time. I am sorry if I am writing a lot, but I have just now had time to sit down process and am still processing all this.
Too answer someone elses questions my ENT said it was a stage 1 and that my frozen sections came back clean, whatever all that means. Thanks.

Angelia,
Oral cancer can be extremely aggressive and you really need to get a second opinion from a Comprehensive Cancer Center.

The National Cancer Institute (NCI) has designated accredited CCC's in most states and these provide a multidisciplinary team approach to diagnosis and treatment: http://cancercenters.cancer.gov/

The American College of Surgeons Commission on Cancer (CoC) has accredited CCC's in many major hospitals and clinics which also follow a multidisciplinary team approach: http://www.cancer.org/asp/search/ftc/ftc_global.asp

For Oral Cancer, the odds are that a NCI designated center is better equipped to diagnose and treat the cancer, but in some metro areas the CoC accredited mega HMO/Hospital based CCC's are equally capable - often more so.

In either case you need to find an accredited CCC with a team that routinely deals with a significant number or Oral Cancer patients.