Hi My name is Sharlee and I live in upstate NY , And I was recently ( On MON) diagnosed with tongue cancer , a definite shock as dont ( nor have I ever) smoke ..not a big drinker and under age 40 and female , all the suposide risk factors. I have to say I am scared to death as I watch my cousin dad , ( MY Uncle by marriage ) go through this. I dont know much yet I go to the specialist on Mon the 29th . I guess I am asking what I could possibly have to look forward to besides the fact I am going to lose more of my tongue ...will I be able to talk , I know when they took out what they did it was difficult and so was swallowing . I am a mom of 5 and just trying to get a grip on this all. so any info and advice could be helpful

Sharlee,

Welcome to this site -- I'm very sorry you need to be here, but I'm glad you found us early in your diagnosis. It sounds as though you've already had part of your tongue removed (when they biopsied it) -- can you tell us a bit more about where on your tongue the tumor is and what your doctors know so far from the pathology reports?

Also, are you being treated at a major cancer center? (There is a list of NCI-designated cancer centers under "Other Resources" on this site.) If not, I would strongly urge you to get a second opinion from one that is (hopefully) not too far from where you live. This disease is best treated by medical teams that deal constantly with head and neck cancer cases. What area of upstate NY do you live in? We have quite a few posters from various parts of upstate NY who may be able to give you suggestions if you need to find a place for a second opinion.

In the meantime, please don't panic. There are many of us here who have survived the treatment and recovered well, and want to give you the support you need. If you haven't yet looked at the vast amounts of oral cancer information that you can find from the home page of this site, by all means check it out, as it will give you plenty of background on the nature of this disease and how to fight it. Feel free to keep posting your questions here, as there will almost always be someone who has been through what you are experiencing.

Cathy

I live in mayfield which is about an hour west of albany . Right now I am just going to an Otolarangologist ( ENT) dont know if I spelled that right. But nervous becasue when i called to get in sooner I asked if they sepcialized in the cancer part of this and the receptionist said " OH I dont know ." Rosewell park is about 4-5 hrs away and Sloan-kettering is about 3-4. Gonna be hard having 5 young kids all the traveling . They did remove the Lesion, ulcer , tumor ..whatever I am supose to refer to it as. Then biopsied it. But the oral Surgeon said Def losing more tongue and "will learn to talk again"...I know you guys dont know me but of course we joke around my brother and sister and I ...we say that for me not being able to talk is a fate worse then death. and of course we dont feel this way for real ....But I like to talk..that is what I am known for .LOL So that scares me. I guess the hardest part is not knowing ..I had the lesion removed Jan 17th it was on the left side of my tongue about half way back ...kinda on the underside but coming up the side toward the top.i dont know how big about a chick pea or maybe an olive was removed. However I know have 3 new lesions 2 weeks later ...go in with one and leave with three.

Sharlee - I'm so glad you found this site. There are lots of helpful and knowledgeable people here. If you check out the info on this site and do as much reading as you can, you will be better prepared to ask the right questions when you see the doctor. It's a good idea to have someone come with you to take notes so you can be sure and get all the information you need. You are right - it is hard not knowing because you can imagine all kinds of things that may not even happen, so take some deep breaths and try to hang in there until you get to the ENT on Monday. Let us know what happens.

Sharlee,

Sorry to hear about your diagnosis, but glad that you have found this site that has many others who have been through this. I was also diagnosed with tongue cancer on the left side of my tongue, in April 06. I have to second the importance of getting a second opinion at a major cancer center - or CCC as they are called. I live in the Atlanta area and although there is a fairly good cancer center at our teaching hospital here, it is not a CCC and isn't really noted for it's work in head and neck cancer. And, when I asked the ENT who actually did my biopsy how many patients HE had treated with my condition - his response was 3 - so I KNEW that he wasn't doing my surgery. After much research I decided to go to MD Anderson in Houston - and have never regretted my decision. Since you live not too far from 2 well-known cancer centers, I would encourage you to go to one of them for at least a consultation before you rush into any further treatment. Sloan Kettering was actually on my list of the top notch places to go...

I am sure it's difficult with 5 children (!) but now's the time to call in family and friends to help support you in this critical period. I am sure once they know the situation people will want to help you out.... If I lived near you I certainly would!!

By the way, I did have a partial glossectomy and selective neck dissection, and at first had some trouble speaking but with time and doing my exercises (I went to a speech therapist a few times who helped me with this) I think I am almost back to normal, and probably only my closest family and friend can tell any difference.

I also have an ENT here in Atlanta that I see for any "urgent" problems (not the same one who diagnosed me) and have had a couple of f/u tests here rather than fly to Houston - it has all worked out very well. I did have my surgery at MD Anderson and go there for my routine follow-up visits...

Wishing you the best - and keep asking everyone here those questions - there is an incredible amount of knowledge here!

Ginny

what is the selective node diseection, does that mean that you chose to do that yourself.

Hi, Sharlee- Nope to the above, selective node dissection means the surgeon will pick some nodes to remove for further testing or that some have showed positive for possible cancer and need to be removed. My advice to you at this point[we've learned alot over the last 2 years] is to try not to look too far into the future. There are lots of "unknowns" at this point in your treatment. Please do go to a CCC for another opinion if you can manage it. When you meet with your ENT on the 29th, he will probably begin to map out his recommendation for treatment. Be sure someone is with you to help listen. After that meeting, it would be very good to get your family/friends together and tell them what help you are going to need to keep your family going during tx. Make a realistic list of things that you cannot do if you are in bed with -say- a bad case of flu- and it might last a few months. Groceries, cooking, laundry, school functions, carting kids to and fro are the 1st things that pop in my mind. The goal is to free yourself from as much of that kind of stress and pressure as possible so you can focus on yourself and getting well. You have a big family and you aren't going to be able to function normally for awhile. Get your support system organized! And, again, don't project too far into the future with "what If's". It is a non-productive endeavor. Save your energy for getting well-a day at a time. Amy

Hi Sharlee, unforunatly we must welcome you to our club, however we have a hell of a great group who will do their best to relieve some of your worries. We have all been there, the wisdom , compassion, knowledge and understanding that you will find here is the best.
Everything Amy said is true, and I just want to re-emphsize, You can do this but it is not easy, get your support group , family and friends in order, let them help you and do things for you, they want to instead of standing around feeling helpless. They are an important part of your treatment plan. Your mind adjustment is also crucial, remember my friend you have cancer cancer does not have you. Take charge and beat this beast down and fight with all you have, it will do a world of good if you approach this the right way and you will. One last thing that I did not see mentioned was make sure that you see your dentist and get those issues straightened out. Also ask your doctor about a PEG tube, this is tough to do with out it if you are going to have radiation. Just remember Sharlee you are in the fight to win and you will. Lean on us, those of us who are here can help to get you through this journey. Hang in there my dear.
Lenny

Sharlee,

If you're not too far from Albany, I suspect the closest CCC's to you are Sloan Kettering in NY and Dana Farber in Boston. Based on what you described about your surgery to date and your ENT office's response to your question about cancer experience, I would re-emphasize the importance of getting to a CCC for another opinion. I know you're probably concerned about the travel time, but please impress on your family that anything they can do to pitch in and help you get to a major cancer center is well worth the time and trouble in the long run.

Cathy

can i ask a stuipd question ? It really isnt good that i had one lesion removed 10 days ago and now i have 3 more in the same general area? Or am I just being paranoid..I know my primary was concerned.I honestly feel in my heart that this is the cancer. I think before I got my diagnosis I knew I just knew even though my dentist and My primary and oral suregon were over 90 some % sure it wasn't. One more thing what is a Peg tube.