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

Kat,

My neck dissection was probably the least difficult part of my treatment. While it is major surgery (and involves all of the up-front cautionary language from the hospital about potential risks), I think many of the people here who have had one have had fairly minor long-term effects. I did have some numbness for awhile in the incision area until the nerves regenerated, and it's possible to have some range-of-motion problems in the neck and shoulder, at least temporarily.

If you do have one, I'd advise having someone who is skilled in plastic surgery do the closing, as it can make the resulting scar much less visible over time.

Cathy

Kat ..where in Georgia are you? I live in Lawrenceville just outside Atlanta and would be happy to talk to you. You are very young to be having to deal with this, I am sorry about that. I agree with my fellow forum members , you need to get to a CCC.
Take Care
Marica

Hi, Kat, I just want to add to the above that the radical neck dissection my husband had was NOT terribly hard to recover from. And I agree that you should seek a CCC to get more feedback. Best wishes to you. You are really to young to be dealing with this. Hope you have some major support from family and friends. Amy

Hi Kat,

As you are seeing, many of us here have had a different treatment plan, even if our diagnosis may have been similar.

I was diagnosed with scc of the left lateral border of the tongue, last March, at the age of 59. In early April I had a partial glossectomy and 30 lymph nodes removed from my neck, even though my CT scan was negative. This was the protocol followed by my surgeon and I followed his advice. He's been doing this for a long time and he is the chief of head and neck surgery at Fox Chase Cancer Center in Phila.

There are many others that did not lymph node removal and are doing well. However, if you are uncomfortable with this for yourself, then you most certainly should get a second opinion at a CCC.

Good luck and keep us posted and keep asking questions.

Jerry

Kat,

I was 41 when I was diagnosed with stage I, poorly differentiated SCC of the tongue 2 years ago. I had about 25% of my tongue removed and 48 lymph nodes removed, which were all free of cancer. There is about a 20% chance that you can have cancer in your lymph nodes even if it does not show up on scans or cannot be felt clinically. The only way to know for sure is with a neck dissection which was no big deal for me. The worst side effect was that my lower lip was paralyzed on one side for about 5 months, but it did recover. My neck is numb above the incision and some of my cheek is numb on side of the dissection. Not bad trade off for the knowledge that this disease had not gotten a hold of my lymph nodes. Go to a comprehensive cancer center, they treat patients on medicaid every day, and get yourself a neck dissection. That is my best advice.

Good luck,

Barb

Kat,

Ditto on all the suggestions from everybody but the bottom line is that if you do not feel comfortable with what the doctors are saying, seek out others that have significant experience with this disease and keep seeking out until you have some level of confidence you are doing what is best based on the information you gather.

I had a great doctor who has now moved on to Vanderbilt (Nashville) and I would be glad to help you get another opinion if you want.

You can go to www.nccn.org and see a list of all the National Comprehensive Cancer Network members. These are the "best of the best".

Keep your mind positive and don't dwell on anyone else's outcome until you have peace of mind with your own situation. There is not a standard that will always apply but the journey that is already rough enough will be easier with the right attitude.

Welcome to the neighborhood, by the way!

Ed

Kat,

Sorry to hear about your cancer at such an early age. I'm way older than you (69) but had exacxtly the same diagnosis in October 2003. The tumor was excised in warly November 2003, and I was examined on December 1, 2003 by the ENT. The pathology showed my lymph nodes were clear. So, no further treatment. However, just before Christmas 2003, i noticed a small area under my tongue. Due to holidays, I was not diagnosed until Jan. 12, 2004. By the time of surgery on Feb. 3, 2004, the cancer was so aggressive that I was in surgery for 12 hours, having a subtotal glossectomy, mandibular and pharynx surgery. Nodes again were clear. As a result, my speech is still sluured and I am still on a feeding tube (PEG). I have aggressively sought new therapies to help me speak and swallow better (just started Vital Stim). The good news is that I am still cancer free.

I am not saying this to frighten, but want my experience to help others in similar circumstances to demand aggressive followups and checks. It is problematic whether or not radiation or chemotherapy soon after the November 2003 surgery would have slowed or prevented the second and much worse occurance, but I will always wonder.

Hi again Kat,
I have been going through all the suggestions and opinions ( mine included!! ) and the most ompressive one is from UPTOWN. You dont have to compare yourself with anyone else. You are your own individual and have your own attitude. You read an article and took things for granted. This does not hold true and the main thing in your favour is your age - where you are able enough to fight the illness.
I really do not want to preach or give any advice - just fight and you will overcome.
Ananth

Kat
I was 25 when I was diagnosed last year so I can appreciate what you are going through. Sounds like I had the same as you only the left side.
I can't help with the Dr.s opinion part as I am in Canada and things are very different here then in the US. If you want to talk to someone "your age" feel free to email me at [email protected]
Words of encouragement are great and I found it really helped when I found someone my age to talk to about all this Cancer stuff.

Not that we don't appreciate the older folks:)

Take Care
Craig

Kat,
I am 32 and was recently diagnosed (10/13/05)with right lateral tongue cancer. No enlarged lymph nodes were seen on my CT. I had a neck disection anyway, and there was cancer in one node and now I am going to be getting radiation next month.
I'm not sure where you are in your treatment - are you getting second opinions or surgery? (The neck surgery was not so bad - my tongue surgery hurt worse.)
Best of luck and feel free to email me. I think we are going through very similar things right now.
- Laura G

Hello Everyone

Thank you again so much for the support! I did get a second opinion, and we decided to do a selective neck dissection on the right side of my neck to biopsy some lymph nodes. The surgery was performed on 10/25, and I'm happy to report that all 10 lymph nodes they found were negative for cancer
I do not require further treatment at this time, but we'll be keeping a look out for recurrence.
Thank you for all your positive words and encouragement. If anyone else finds this topic and would like to write, please feel free. Take care!
-Kat

That is great news, Kat. The most important thing now is to follow up according to your doctor's instructions. I went monthly until surgery was healed, every six weeks, then two months. I am now on an every 3 month check.

Best to you!
Lisa

Kat - Great news. It really sounds like you are doing the right things. Its good that you are being proactive about your care. No one will ever care more about your care than you do, so its good to be both knowledgeable and involved. Second and third opinions are ALWAYS a good idea with this disease.

I am clear now for two years and I have learned that the ent docs (typically surgeons), see this disease through that surgeon's lens and their recommendations reflect that. An oncologist looks at this condition in a slightly different way and makes recommendations based more on their unique training. Same with the radiation docs. I had to learn to stir all that advice together and make my own decisions.

Its great to hear that you are doing so well. Keep up the good health!! Tom J -

Mine was t4 tongue tumor with mets to the neck. I had no surgery, only chemo and radiation (lots of both) and am doing great.

Kat, Congratulations on the clean nodes! That's very good news. Nelie