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