Hi all,
My name is Wendy, I have just been diagnosed with tongue cancer. It has not been staged yet. Today i go to my first apt it ENT specialist. I think it may be fairly serious. With everything I have found on the internet I am guessing T4, I won't know about the "N or M" factors until complete testing is complete. I am finding the most difficult part right now, trying to figure out how to tell people. I have 2 adult children and a 14 yr old who just lost a pet due to cancer... I just don't know how this is all going to work out. I couldn't sleep, it is now 5:30 am, I have been up since 4am. I am sure just one of many sleepless nights to come.

I had been haveing some dental problems and gotton a sore on the side of my tongue. Assuming that when the dental work was complete the sore would heal up and everything would be fine. So I didn't take any steps to resolve the sore. After waiting for my dental insurance pre authorization and planning the crowns and repair of my dental issues, I suppose about 6 months had gone by. Well with a 4 week proccess of getting a temp crown and then finally a permenant crown the sore did not heal. The final look from my dentist was on Tues September 15th, I was at the oral surgeon's office on Friday September 18th for a biopsy, and by Wed September 23rd was diagnosed with base of tongue cancer. My first appointmetn with the ENT specialist is today, Thursday Sep 24th. My oral surgeon was pretty upset and I think it will be only a matter of days that I will be in surgery. I don't know. I would like to keep a journal of this process. I am scared!

Wendy,

If you weren't scared you wouldn't be normal. We have all been there. It's good that you are moving quickly through the process
of getting a full diagnosis and a treatment plan. I was fortunate to get things rolling quickly, but many here were not. Waiting is one of the most frustrating and difficult parts of the process

You haven't mentioned if you are being treated at a Comprehensive Cancer Center (CCC). If possible, you may want to consider a second opinion at one, before starting your treatment.

Telling family is not easy, but the truth, especially with your children is very important. I found that doing this face to face was the best way for me. I waited until I had all the facts.

If possible, try to have someone with you at your visits now, as you will be bound to miss some of the things that are said. Take notes and write down any questions that you will invariably have, so you don't get home and realize that there was more that you wanted to know.

This forum, as well as the main part of this site, are the best source of information on the internet regarding oral cancer. For now, keep all of your questions in this one thread so that the wonderful people here will be able to help you more easily.

I am usually on my computer off and on most all day, but I will be out of touch most of the day today, as I am going to visit one of our OCF family members who is in the hospital.

You can email me directly if you click on my name on the left and then go to profile. If you want to talk, send me your phone number.

You will get through this difficult process. We are here for you.

Jerry

Jerry has just given you a liftime of advice in a few words. Jerry is as you probably seen a Dentist and an OC victim. Do as he says and it will make things much easier. I was lucky and found this site 2 months before I had surgery and the memebers here kept me on my toes as things progressed. Good luck and try to keep a smile. It's hard but you can do it.

Wendy,

What surgery was your Oral Surgeon saying he thought you would have? I had BOT and 2 nodes and had ZERO as in NO surgery. I also consulted 5 different cancer docs before I let anyone do anything to me. BTW my fifth doctor was a CCC, Moffitt in Tampa and if I were you after hearing what the ENT says I would run to the nearest one for another opinion.

For a list of CCC's http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Also just my personal opinion, I think I would wait until you know more before I would tell your kids anything other than "I am having some medical tests done"

Well , these are hardly kids just as mine were. I told mine right away and by the time my surgery date arrived they were prepared for it as I was. If it bothered them, they didn't say anything but were great .

Thank you all for your words of wisdom and you concern. I am pretty blown away by all this. Regarding the second opion, I think I would kind of like one, (although) I don't really have a first opinion yet. I feel kind of rushed. My family doesn't want me to wait even on moment. They want me to get things going NOW. How quickly can I get a second opinion, how about just asking one of the doctors coleagues if they agree? Would that be a second opinion?

Second opinion at a CCC. My first ENT wanted to cut. I got my second opinion at a CCC and like DavidCPA had NO surgery. I, like you, was ready to "get it out of there." I actually had the surgery scheduled, but because of the advice of someone who had oral cancer 14 years ago, i got a second opinon.

That second opinion yielded a plan from a team of doctors that was radiation/chemo first and then surgery if necessary. CT and PET scans were clear and i did not get surgery.

Most of us aren't doctors, but I don't think anyone on this board would suggest anything but a second opinion.

As far as your family being in a hurry, let them read some of the postings on this board. For me, it was more than 45 days from the time i found the lump on my neck to the day i got my first chemo treatment.

Right you are Ray. Wendy, there is no just getting it done with cancer. Everything takes agonizingly long. I found the lump on my neck in dec '07 but treatment didn't start til feb '08. There is time to find plenty of info and get amore opinions and still, if you choose, go with the original doc's on the case. It's a tough road ahead and scary but keep a positive attitude and keep your family around you, you can do it. Best of luck to you.

Wendy:
I discovered this site 9 months ago when I was diagnosed with BOT. The people on this site are extremely knowledgable. I would definitely take their advice on consulting a CCC (Comprehensive Cancer Center). These docotors diagnose and treat many more OC patients than an ENT who may only treat a few patients a year. Also they may more current on the latest medical info and treatments.

I also would not hesitate to get 2,3 or even 4 opinions until your comfortable with your treatment decisions.

I would also take another step and do research on the web regarding different chemo drugs/radiation/different types of treatment. Gain knowledge so you can be your own advocate. For me this was invaluable as I felt involved in the process. This reduced my fear and gave me peace of mind that I made the right decisions.

I also did not have surgery. Originally, doctor's wanted to treat me with chemo/radiation, but I opted for a more aggressive treatment. I decided to do Induction Chemo Therapy (combo of 3 drugs) and then radiation. I sailed through both treatment although most patients have more side effects from these treatments. Now, I've just had my 3 month PET/CT scan to see if there is any of the cancer left, and then possibly do surgery to remove it. (Hope not!)

When I was first diagnosed I was scared. My imagination took me to the worst places. But then, I decided that this cancer was not going to control me. I took control where I could: The Present. I did research, talked to several doctors, and worked hard during my treatment and recovery to regain my health.

If you have any questions or just need a cancer support buddy, don't hesitate to email me.

Sandyst

Hi Wnedy- Try and remain calm until they get mroe test results back and figure out a treatment plan. ITs easy to let your mind run wild with what ifs.

You are in my prayers today. I am hoping for the best possible result in dealing with this disease.

Big hug to you. Stay strong and try to remain calm and positive.
I know it isn't easy! KATE