Hi. My name is Jennifer, and I was just diagnosed with a squamous cell carcinoma on the right side of my tongue. I've been battling leukoplakia patches on that side since 1991, and have had 4 surgeries over the past 14 years to remove it, but it had always been "abnormal" and not cancerous. I guess it hasn't really sunk in yet.

I'm hoping it is still early, but I have more testing on Monday. CAT scan, blood work, X-rays, etc... My ENT seems to be very aggressive (biopsied it the day he saw me), which makes me feel a little better.

The one good thing is, the biopsies of patches further down the back of my tongue were just "seriously abnormal", so I'm hoping it's not into my lymph nodes or jaw bone or anything yet.

Anyway, the web site is exactly what I needed. People who have been through this type of thing and have great advice!

Thanks,
Jennifer, 42, mother of 2

Hi Jennifer
If like me you have been dx with problems in the past, ride with it let them be aggresive, go with it and fight every inch of the way, 8 months after 12 hours of surgery I've been told not to got back for a check for 6months, so there is light at the end of the tunnel, now you have found us please stay and tell us hw you are doing...
Sunshine.. love and hugs
Helen

Hi Jennifer,

I am now 2.5 weeks post-op for removal of ssc of the left lateral border of the tongue. I also had a modified neck dissection removing 30 nodes (which were clear). I had no history of leukoplakia, however. Although my nodes were clear on an MRI, my surgeon felt that MRI's are 85% accurate and insisted I agree to their removal. I am happy I did, as for me, living with that 15% would have driven me crazy.
Sounds like your ENT is doing the right thing for you taking immediate action. Mentally, you want to get things going as quickly as possible.
Certainly, every case is different, but I can tell you that I am thrilled with my progress and am speaking normally already, eating almost everything, however, slowly. Please feel free to email me directly, if you would like and we can then speak on the phone at any time as this sometimes is the best way to deal with this situation. I was fortunate to have someone before and many after my surgery who helped me a great deal in handling things.

Good luck and I hope to hear from you. This can be beat and it will be.

Jerry

Jennifer,

I was diagnosed with SCC of the tongue at the age of 41. It was superficially invasive and had not spread to my lymph nodes. This was confirmed by a modified neck dissection -- 48 lymph nodes biopsied, all cancer free. That is the only way to know for sure and it gave me great piece of mind. If I hadn't had my lymph nodes removed, I think I would always be waiting for the other shoe to drop. Good luck and please feel free to follow up with any of us with any questions you have.

Barb

Wow. Thank you so much for your replies. I guess I'm going to have to read up on modified neck dissection, as it sounds like that might be in my near future. I have to admit...I have had these lesions removed several times..and although it always hurt like hell, it was just my tongue and I always recovered quickly. The idea of lymph node removal is pretty scary! But, I am prepared to do whatever it takes!

I didn't say in my first post, but one of my daughters is 5 months old (the other is 7). I need to be around and healthy for a long time! :-)

Jerry, I might take you up on the offer to talk sometime. I need to find out more first, but I wanted you to know how much I appreciate the offer.

Thanks to all of you!

Jennifer

Jennifer,

Don't worry about the lymph node removal. The truth is that that part was a piece of cake. Other than a "drawing" sensation along the incision, as well as some residual numbness in the area, I have to tell you that the peace of mind knowing that my 30 nodes were clear, is well worth what I am going through. Although relatively of short duration, the discomfort of the tongue healing, was more difficult to handle than the neck. Not sure if others had this too, but I'm sure they did...I am in physical therapy now to strenghten my left arm. There is a residual weakness there due to the neck dissection. I am doing about 11 exercises at home and see the therapist 2 x/week. This should end soon, as I see improvement every day.

You will be there for your daughters, I know it. You must keep a positive attitude, as my said to me "there is no other option, we will get through this". and we did and we will continue.

We are "all" here for you.

Jerry

Hello Jennifer
Just a quick welcome to the site . You have quite a journey ahead of you , glad to see you are being so proactive.
You will find lots of invaluable advice here as well as people who really care and wish you well. The information and news section is the BEST.
While you are still feeling pretty good, gather around you all the friends and family who can help with the girls and the day to day stuff, don`t be shy about asking for help. All your energy will be needed to fight this "THING".
Good luck with your scans Monday, let us know how you are doing .
Take Care
Marica

Good luck today and let us know how things went.

Jerry

I am not a "weepy" person, but made me teary to read your responses. Thank you SO much for the support you've already shown...it means a lot! Today went fine. Had a chest X-ray, head and neck X-ray, and CT, along with blood work. I have a question, should they do a PET, or will the surgeon I will go to do that later?

My ENT is the one who ordered the above tests..I don't meet with a "cancer specialist" until May 10th. Is that too far out? One thing, he's in Oklahoma City. I checked him out online and found his last institution was M.D. Anderson in Houston, which was #1 on your list of 50 top facilities, so that made me feel better.

I have another question...my ear hurts all the time now, which my ENT says is related to the cancer. If/when they remove the tumor will I have any hearing loss? Has anyone else had that kind of related ear pain?

Thank you again. Your support has already been awesome.

Jennifer

Hi Jennifer
Don't know about the PET scan they don't seem to do those in the UK, I had an MRI scan though, but what you have had today sounds a good ground base to work from, glad you know the guy at the cancer center is the best.
I am concerned about your ear pain, I never had any and to the best of my recollection it's not been mentioned much on the posts (anyone who knows different please feel free to correct me) maybe the tumour is on a nerve? Hearing loss doesn't seem to figure much in the posts, maybe you should see if you can go back beore the 10th of May and ask these questions of the ENT team, it seems a long time to me for you to worry aboout it all, maybe in a week when they have some results you could contact them to see what you learn from them. You have the right atitude lady, great.. YOU CAN DO THIS
Sunshine... love and hugs
Helen