Hi, my name is Katherine and I was diagnosed with Squamous Cell Carcinoma of the right lateral tongue last week, and had surgery to remove the tumor on my 26th birthday (yippee).
My ENT says there is no "evidence" of lymph node involvement, and he just wants to "watch and see". I had a CT Scan the other day that came back clear, but I'm not sure I trust the results. In my online research I came across the Avinash Raina Foundation and read the story of a young man who would be the same age as me had he not parished from this disease in 2001. I am really scared, and feel like my concerns are not being taken seriously by my doctors because of my age. Also, they have no prior experience with this cancer in someone in my age group. I would greatly appreciate being pointed in the right direction for a 2nd opinion on my treatment. (Words of encouragement do wonders too) Thanks, and I hope to hear from you soon. Take care!!

-Kat

awww bless kat,you have come to the right site that i can assure you of. the ppl here are tremendous.it is normal to be scared at such a young age to cancer has no boundrys as you will find outprayers and huggs your way kat...best wihes ...maz

Hi Katherine,
Welcome to the site. I am a tonsil cancer survivor myself so folks with more specific ideas about tomgue cancer will respond to you.

If at all possible, I would seek out a comprehensive cancer center for your followups. They do see people your age with oral cancers there (although it is a little unusual for someone your age). That is even more reason to be be very careful. Did you have a PET or PET/CT before they started treatment? How big was the tumor? How did he determine there is "no evidence" of lymph node involvement? What was your staging?

"Watchful Waiting" is what most of have in the way of followup. Just guessing, it sounds like they caught it in a very early stage and a single treatment modality would be fairly predictable. Tongue cancers can be aggressive however and some feel it is better to hit them hard right away. If you can't get to or find a comprehensive cancer center in your area, at least get copies of your medical records and scans (they can put them on a CDR) and send them to one for review just to be on the safe side.

Kat,


Welcome to this site -- I'm sorry you need to be here, but I hope we can help.

I was a bit older than you (39), but still relatively young for this disease when I was diagnosed. As I was a non-smoker, several doctors had dismissed my very obvious symptoms as "nothing serious", until I found an oral surgeon who recognized what he was looking at and did a biopsy that showed SCC of the left lateral tongue. My surgical team did not only a partial glossectomy to remove the tumor, but also a modified radical neck dissection to remove many of the surrounding lymph nodes for biopsy. Even though those nodes came back clear, my head and neck team at the nearest comprehensive cancer center felt strongly that I should proceed with radiation soon after surgery because of my relatively young age and the fact that the pathology report showed the tumor could be fairly aggressive.

I definitely agree with Gary that you should get an opinion from a major cancer center (you can find a list of NCI-designated ones in "Other Resources" on this site). There are factors such as your age, the stage of your tumor and degree of aggressiveness that should enter into any treatment decision, and there are many of us here who have good reason to believe that the best results tend to come when you hit this disease hard at the earliest possible point.

Please feel free to come back with more questions and let us know how you are doing.

Cathy

Hi Katherine,

...and I too am very sorry for your misfortune. I was 34 at time of diagnosis and currently only see an ENT. I am now beginning to seek other professionals for more opinions and options as some of my concerns become greater. I was seen at a Cancer Center once, and I can relate to your concerns and frustrations regarding your concerns not taken seriously, for I have been treated very much the same way. I was a "very shallow" stage 2, and the prognosis I was given couldn't have been better. Because of this, I think many of my concerns are dismissed, and many times wonder if I am just being paranoid.

I too recommend what others have said, and get into a Comprehensive Cancer Center for evaluation. You may want to consult with an oncologist for another opinion as well. I was informed by some on this forum that the oncologists do more follow up scans, etc, where an ENT will just look and palpate. I, also have the same fears/concerns as you. I don't think you can be too safe when it comes to treating this, and the sooner we act, the better the outcome. I wish you very, very best on your road to good health. God Bless!

Rick

Welcome Kat, I am sorry to hear about your tongue cancer. I am a tongue cancer survivor, please feel free to email me. Take Care, Carol

Thank you all so much for writing back I did not expect such a response, especially so quickly. Thank you.
Do any of you know how much it costs to be seen by a specialised cancer treatment center, or if there are any that treat people regardless? (I am definately not wealthy, and the only medical coverage I have is Medicaid). Also, Cathy, I would be very interested in hearing what your neck surgery was like, as I have been considering at least having some lymph nodes removed for biopsy in light of Scans not always being accurate. (My doctors don't seem to want to even consider it though). I am really concerned about it though, especially since reading about Avinash Raina because he was so young as well.

http://avinashraina.com/index.html
(if you visit the site, make sure you read "Medical Background" and "Lessons Learned").

I have now included my diagnosis and staging in my signature. Thank you again to all of you who have responded, I will keep checking to see if there are more. Take Care!!
-Kat

Hi Kate, I sorry you had to find us this way. I too had tongue cancer 15 years ago. I don't remember much about the surgery back then but I
had a wonderful surgeon in Venice Florida. Feel
free to ask any question and to e-mail me.
Cath R.

Hi Katherine,
I am a survivor of the cancer of the larynx which was diagnosed in April 2000 in stage 4. Though I am not a doctor or a very religious person - I do believe that if one accepts what one has got ( in this case -the cancer ) - you can start preparing for the war without fear. Today its just four and half years since I was daignosed and I went through hell for so many months - but today I am cancer free( well thats what the doctors say ), have my larynx intact, speak very normally. The only temprory side effect of a massive ovedose of radiation is my food passage and wind passage which have narrowed down - and are being brought back to normalcy through dilation. I feed through a peg in my stomach and breathe through a temprory stoma button.What I am trying to convey is being scared because some else passed away is no reason why you should be thinking negatively. You have the power withen you to overcome the cancer and the faster you realise that - the faster the healing will take place.
Take care.
______________________________________________
Ananth - Larynx cancer - 4th. stage - recovered completly with few side effects as mentioned.

Kat,

For what it's worth, this is just an opinion from the mother of a 29 year old non-survivor.....
My daughter, Heather also had a good prognosis based on the CT scan and palpation results. Her tumor was on the base of the tongue, which maybe is a bit more aggressive than on the lateral tongue, but on the tongue anywhere is generally more aggressive than elsewhere, i.e. the tonsils.

Based on his palpation done before the surgery, the doctor thought she was probably at stage 2. Her pre-surgery CT scan didn't show the tumor or any positive nodes. Her surgery went well, showing clear margins and several "good" signs that hers was not "out of control", to put it simply. To make a long story short, the CT scan and palpation were VERY unreliable and although she did have a full course of radiation after her surgery, she still did not survive.

This is not said to scare you, but to make you aware that a CT scan and palpation are not always accurate. It would be wise for you to have a neck dissection. Or, as Gary said, get your records looked at by a specialist, at the very least. I am sorry I can't help you when it comes to the insurance side of it, but if you can somehow get a referral approved to a major cancer center, it would be for the best. Just to be sure.

Wishing you the best,
Rosie