#38512 05-07-2005 06:15 AM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | OP  Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | Hi all. I was diagnosed with an SCC on my tongue. I had it biopsied on 4/18 and got the bad news on 4/21. This past Thursday, the ENT gave me the results from my X-rays and bloodwork. All indications are it is contained to the oral cavity. The only questionable finding was one "slightly enlarged" lymph node on that side. The ENT says the tumor is borderline T1/T2 according to size.
I am headed to the otolaryngologist on Tuesday the 10th for consult. The thing I don't know is, there is a portion that has spread up my jaw to the gums on the inside of my molars. My ENT told me if they remove that part surgically, there is a chance they will have to take part of the jaw bone. He wasn't sure if the otolaryngologist would recommend that or radiation therapy. He also wasn't sure how they would handle the enlarged lymph node. I say...if there's any doubt, I want it removed! Will be interesting to see what the specialist says.
Anyway, I knew the jaw was a question, so I'm still nervous. But, at least all my other tests came back clear (lungs, brain, etc..). I will let you know how the consult goes on Tuesday.
I sure am ready to get started. The waiting and unknown are the worst parts so far. Plus, swallowing and yawning are getting pretty painful. Also a lot of referred pain in my ear.
I'm looking forward to being one of the many "survivors" and giving pep talks and advice to others instead of being on this end of the chat board. :-)
Thanks,
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
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#38513 05-07-2005 06:34 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Jennifer,
With a T1/T2 I would be getting a second opinion, especially with that type of surgery. I hope that you are being seen at a comprehensive cancer center. You want to have access to the best treatment possibilities.
On a positive note it appears that it was caught early.
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)
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#38514 05-07-2005 07:23 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Jennifer
Tell them to hit it with everything they have got, several on the forum have had jaw bones removed and replaced with healthy bone from else where, several have had radiation, keep searching the forum and keep asking the questions, keep us informformed how you are doing.
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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#38515 05-07-2005 07:50 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Jennifer,
It's great news that all the tests so far show no spread from the oral cavity. But I'd second the advice to get a second opinion no matter what. If I hadn't gotten one, I wouldn't be having the aggressive treatment I am having but I think I also might have left myself much more vulnerable to a recurrence. And I was advised in a second oponion to have this treatment even though I had no node involvement, either based on CT results or subsequent neck dissection surgery which removed about 28 nodes.
I think it might be time to travel to a comprehensive cancer center for an opinion. I know you are eager to get started but time for a second opinion is definitely not wasted time.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#38516 05-07-2005 01:17 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Jennifer,
You have gotten some sound advice from the above posters. You want the best to evaulate your condition. Someone who sees Head & Neck cancer patients alot. I found out after my treatment at the local cancer center they only saw 5 oral cancer patients a year!!! I was a stage 4.
You want to throw everything at this the first time. It is a most unforgiving diaease.
We have lost some stage 1 & 2's while stage 3 & 4 have survived. Everyone reacts differently to similer treatment. As you start your journey I hope your decisions are sound and you recover completely. You can beat this just like so many other members have. I and many members will be pulling for you. Ask any question you can think of and someone will reply. It is a close band of brothers you are now a part of. I like to think of it as "One Big International Cyber Family"
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#38517 05-07-2005 01:39 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Brian, How do I move this to a new posting? Dan
Hello All,
I am scheduled for twenty (HBC) dives prior to some dental work. Followed by ten after trearment ends. Some questions I have are:
What is it like?
Are you in a cylinder or a room?
Is it painless?
Will I need any meds to control pressure in my ears?
Remember I'm a big chicken when it comes to pain.
And I hate shots!!!!
Love ya All, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#38518 05-07-2005 02:30 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | The basics of HBO Treatment:
I went once a day, five days a week.
When I arrived I went to a bathroom that had small lockers for our personal belongings and I changed into a hospital gown.
No makeup, NO jewelry, NOTHING is allowed in the cylinder with you. If you are doing treatments in a room with others I believe you are able to keep some reading material, although I'm not sure.
I would get onto a gurney that was put directly into the cylinder.
A black bracelet is put on you, called a "ground".
You are given a bottle of water, sometimes in childs sippy.
You are given an oxygen mask for your "oxygen breaks".
They wheel you in and start taking you down. Not that you go anywhere, but they start decompressing the cylinder, if that is the correct terminology.
The first time it's a little scary because you expect all this pain in your ears but I didn't suffer that at all. I eventually was able to go "down" without even a drink and could control popping my ears by swallowing.
I was able to watch TV and could even choose a movie to watch, which I didn't often do as I usually didn't get to see the end of it.
They will check your ears at each treatment to watch for any problems.
Ask for extra blankets, I always found it cold in the cylinder. I didn't have claustrophobic issues with this treatment, the cylinders are quite roomy.
You will have changes in your eyesight. If you wear glassed your eyes will reach near perfect vision for an extended period of time, for me it was over a month. I would have to take my glasses off a good part of the day. Eventually your eyesight will return to it's original state.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#38519 05-07-2005 04:15 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Danny, I can only move an entire thread. If someone posts a new message at then end of someone else's thread, the most I can do is delete it... so much for my omnipotent powers!!! We just need to email the poster and tell them the protocol about starting new threads when they start an original or new idea. Clearly this shouldn't be done here; perhaps the poster will start that new thread having read this.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#38520 05-08-2005 01:12 PM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | Thanks to all of you for the advice. The otolaryngologist I'm headed to see on Tuesday is at the OU Med Center in Oklahoma City. I've heard great things about it and they have oncologists etc... on staff.
I will make sure to ask how many oral cancer cases they see a year and see how hard they plan to hit this. I think from what I've read on this site and what I've read on my own, I will have a good idea how to proceed after talking to the surgeon.
I'll let you know how it goes on Tuesday!
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
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#38521 05-09-2005 06:50 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | Jen,
Nice to see you have done your homework. Keep it up. You can win this battle with brains.
Your attitiude is great!
Just left the OU med center page. Looks like its the place to be in OK.
Make sure your share the protocol with us.
Take it easy.
Robert
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
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