Previous Thread
Next Thread
Print Thread
#20132 04-06-2006 05:15 PM
Joined: Apr 2006
Posts: 3
Echo C Offline OP
Member
OP Offline
Member

Joined: Apr 2006
Posts: 3
I was diagnosed with squamous cell carcinoma of tongue 14 years ago. It all started with a small white lesion on the left side of my tongue that never healed. I didn't pay attention for another 8 month until I went to see a local ENT doctor. He took biopsy right away and called me few days later and told me it was SCC stage 1 well differentiated. He suggested me to go to see radiation oncologist although he felt the surgery was the best way to treat what I had. When I went to see the radiologist, he also recommended surgery instead of radiation. My ENT doctor recommended a head and neck specialist to perform the surgery. I had a surgery on 7-24-1992, only two month after the initial biopsy.
The surgeon told me that it was very rare for a person like me that never smoke and rarely drink alcohol at age 38 to get a tongue cancer. I think I was lucky to be able to take care of this at early stage.
The recovery was a slow process, but I am a 14 year survivor... and counting.

#20133 04-06-2006 08:04 PM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Welcome Echo and congratulations on being a 14 year survivor! It gives us all hope.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#20134 04-06-2006 11:30 PM
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Hi Echo,

Welcome to the OCF and congratulations on your 14 year success in beating scc. Other than the fact that I was 59 years old, your story is very similar to mine.

Unfortunately, today it is not so rare that many people getting oral cancer have no known risk factors.

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"
#20135 04-07-2006 08:25 AM
Joined: Apr 2004
Posts: 50
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Apr 2004
Posts: 50
Congratulations. Stories like your's help us all.

Best regards and continued success.

#20136 04-07-2006 02:59 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Echo C, Thanks for that message.I will brighten alot of days. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#20137 04-09-2006 10:10 AM
Joined: Apr 2006
Posts: 3
Echo C Offline OP
Member
OP Offline
Member

Joined: Apr 2006
Posts: 3
I had partial left glossectomy in 1992 with 19 nodes from left side removed (all clear). The surgeon spent 7 hours by cutting the section in 3 small increments with sending the samples to pathology each time to make sure the margin was clear yet not cutting too much. When I woke up in ICU, I felt I had tubes coming out from all over my face and gauze stuffed in my mouth. Before the surgey, the doctor told me that I might have to have speach thepary and/or corrective surgery to improve speach. Fortunately, I didn't need any although it has been a long process to get back to near normal. Since the nerve on the tip of my tongue did not grow back completely, whenever I am tired, I feel my tongue is tired too and can not escape my chewing food. I could feel I bit my tongue but not very painful except there is a big gush of mark with blood coming out.
Something else came out during the initial head and neck MRI was that I had small growth in the back of head near left ear. The surgeon told me it is in a very difficult area to get to, so he decided not to remove it but repeat MRI every 3-5 years to observe. I had MRI 4 times so far since then, but the size never changed. I wondered how long I had this growth in my head? If I didn't have tongue CA, I would never had known this.
I think it is wonderful to have a forum like this to exchange information. When I was diagnosed 14 years ago, computer was not as popular as now and information I could find was very limited.

#20138 04-09-2006 03:51 PM
Joined: Mar 2006
Posts: 22
Member
Offline
Member

Joined: Mar 2006
Posts: 22
Welcome Echo,

Your story is one of hope, and one we all appreciate reading about.

Thank you for sharing with us.

Scott


Father diagnosed 3/06, Poorly Differentiated Carcinosarcoma BOT Primary. T3N2bM0
#20139 04-09-2006 06:46 PM
Joined: Apr 2005
Posts: 80
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Apr 2005
Posts: 80
Echo,

I'm excited to see a 14-year survivor who only had surgery and no radiation or chemo. Don't get me wrong, I am happy to read messages from ALL survivors, but I often think about my own treatment and wonder if I shouldn't have had radiation in addition to my surgery.

My SCC was removed with good margins and no affected lymph nodes, so no radiation recommended. But, it makes me feel a lot better to see someone else who also had the same treatment and is doing so well.

Welcome to the forum and thanks for your post.

Jennifer


Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
#20140 04-10-2006 04:19 AM
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Awesome to hear from you Echo, loved to hear about your 14 years and counting....gives me hope.....Take Care, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#20141 04-10-2006 10:47 AM
Joined: May 2004
Posts: 218
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: May 2004
Posts: 218
I'm with Jen.
It is soooo cool to hear about 14 year survivors.
Congrats and keep up the fight.
-rh


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5