#27749 09-23-2005 04:28 AM | Joined: Sep 2005 Posts: 6 Member | OP  Member
Joined: Sep 2005 Posts: 6 | Just been diagnosed with base of tongue stage I(squamous cell carcinoma) looking for someone with experience in this. Want feedback on the best path to follow for treatment. Thanks Ron. | | |
#27750 09-23-2005 08:31 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Ronnie, There are many here that have been where you are now. For the moment wait and see what your doctors recommend. Be sure you are getting the best advice you can find. (generally at a comprehensive cancer center). If it is small and caught early you have an excellent chance for full recovery. That said, this cancer is a bastard and you do not want to take chances.
Take care and Welcome to OCF.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#27751 09-23-2005 09:11 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2002 Posts: 80 Likes: 1 | Ronnie
Just wanted to welcome you the forum, sorry you are having to deal w/this. Just get to a comprehensive cancer center and get the best help you can. Just to let you know it want be easy but keep positive. I had cancer on my tongue they removed part of my tongue, took rad. and chemo. but I am now 4 1/2 years out. It is scarry and it is hard, the treatment is the hardest. We went after mine with everything and I can say now I'm glad we did. I will be keeping you in my prayers.
JOAN
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#27752 09-23-2005 10:03 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Ronnie
Sorry you had to find us, but welcome. Use the search engine on this site it will reveal much that you need to know. You can do this we all have, just keep the faith.
Sunshine, love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#27753 09-23-2005 12:53 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Welcome Ronnie
It is fortunate that your cancer has been discovered at Stage 1. You have a great chance for total cure. The main site here describes in detail the various stages and treatments.
Ask lots of questions, take notes when you speak with doctors, query anything you are not comfortable with and speak freely with your family and friends - they will be a wonderful comfort. I found that the more information about the disease I had, the lesser my fear.
Many here have travelled a similar path and will offer support. Let us know how you are.
Love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#27754 09-23-2005 02:09 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Ron,
You have found the most comprehensive site for oral cancer patients on the web. Take advantage of the search engine at the top of this page and the one on the home page. There is a wealth of information here and a tremendous amount of support.
I was diagnosed with Stage I, scc on the tongue, last March. Hopefully you are being seen at a comprehensive cancer center. A lot depends on what they find in relation to your lymph nodes. Treatment can be limited to surgery only (as was mine) or a combination of surgery, radiation and/or chemo.
You should keep us posted with more information as you get it. There is no course of treatment that someone on this board hasn't been through.
Good luck.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#27755 09-25-2005 06:28 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hello Ronnie I just wanted to say Hi and welcome.
You are at the start of a pretty rough journey but we can help.
Hang with us a while.
Best Wishes
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#27756 09-25-2005 09:19 AM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Ronnie, Here's a link to the list of Comprehensive Cancer Centers by State. It would appear that the closest one would be at the University Cancer Center in Tucson. I would strongly encourage you to seek a second opinion there if you can. http://www3.cancer.gov/cancercenters/centerslist.html#L2 Good Health, Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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#27757 09-25-2005 11:14 AM | Joined: Jan 2004 Posts: 20 Member | | Member
Joined: Jan 2004 Posts: 20 | Ronnie...I had squammous cell cancer of the tongue in July of 1999 and have survived it since then....I lost over half of my tongue...manage to talk ( with false teeth yet) and love life. I am 62...now living in Arizona (had surgery in Oakland, Calif with Kaiser at the time..1999...with 6 weeks of radiation too but since have retired in Higley (outside of Gilbert, Az)....Life goes on now with the help of a blender. Most people do not realize that you need your tongue to PUSH the food back to your throat to swallow it. I have does wondrous things with this blender....concoctions you would never dream of. After all, once food is in your tummy, it sort of looks all mashed up anyway but you still enjoy the taste. Life may get rough for a while but don't dispair. There is Ensure to drink and the doctors have great liquid foods for a while till your body heals and gets back on track. If you have any problems or questions, feel free to email me and I can answer your questions from what I lived through. Knowlegde is power. This site is a great inspiration to all...Never give up...Love ya all, Flo Keep the faith... | | |
#27758 09-27-2005 09:22 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Ronnie,
I had Stage IV SCC of base of tongue diagnosed July, 2002 and am now doing fine. Unlike some of the others who responded to your posting, I had no surgery to my tongue or neck nodes. If you have any questions I would be happy to share whatever I know with you.
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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