| 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 | It sounds like you have done what you can at this time until the report comes back on the removed tissue, that give you some idea bout clean margins etc. You can make further decisions then. Even if it is a complete removal, I would still what to have opinions from people outside the surgical world. And don't forget about regular, at minimum every six month, oral screenings by someone that you trust to find these things.
As to what happened in the past, and if that was appropriate, the best that could have been done, etc., that is water under the bridge. You need to understand exactly where things are today, and have a plan to monitor and correct, with people that you trust for years into the future.
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. | | | | Joined: Jul 2011 Posts: 19 Likes: 1 Member | OP Member Joined: Jul 2011 Posts: 19 Likes: 1 | Thanks based on what I have told you what stage would I be classified and what is future prognosis if I get checked every three months now is that enough? I am def in alot of pain now. He did go in kind of deep in some spots is there a way to get a scan while I am waiting results. I have felt kind of lethargic lately could this be because my body has been fighting this. Another girl who posted said I wouldnt notice that? I had been drinking alot of caffeine to keep going. should i pursue a scan and what about pursuing radiation or other treatments? | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Your Dr. didn't give you any pain meds after surgery?
As far as Radiation or other treatments you have to wait for the results of your biopsy and scans. After my biopsy came back stating SCC I had a PET/CT Scan from my lungs all the way up.
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Staging is done when the tumor is measured and you have had a PET scan. Its not possible to tell over the internet what Stage you were. Many members have advised you to go to a cancer center for a team approach to this. Another excellent place for more care would be an ENT who specializes in oral cancer. I agree with Connie, no pain meds? Mouth pain can be awful, call your doc if you havent gotten any pain meds.
Wishing you a quick recovery! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2011 Posts: 19 Likes: 1 Member | OP Member Joined: Jul 2011 Posts: 19 Likes: 1 | I did get pain meds norco. I cant anything though and can barely swallow pills. My initial biopsy was diagnosed that I had keratinizing severe dysplasia with micoinvasive carcinoma I was told by dr that this can be misleading cause different pathologists define it differently . He took away all of leukoplkia and other tissue that had dyplasia. what were your feeling and symptoms etc whe you went through this? | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | I was given liquid pain medication. Never heard of Norco, I don't take pain meds any more.
Seeing you have read what most of us have been through and I wish I had found this forum earlier I would have followed what the people are saying in here. They know what they're talking about. Follow through with a Cancer Center near you seeing you live in NY they have many around the area. I would step on it if I were in your shoes.
We cannot diagnose on here we are all different. I had no cancer cells in my lymphnodes, but someone with the same cancer as me might have.
I go for my CT/Scan in Sept and who knows what that will bring. As you can see when most of us are scheduled for a CT/Scan we get nervous. We might not have any symptoms the CT/Scan will tell.
Call a Cancer Center today and make an appointment it might take a week or so to get in. I would do it to get another opinion this is your life!!!!! Take all your records with you don't think your going to hurt your Dr.'s feelings....this is your LIFE!!!!
Take care, Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey sorry you're in pain... Your meds should make it easier to eat - if not try a protien shake ir two... Try to make it room temperature. It will fill you up and help you heal. Try to avoid sugar... Not good for you - make the shake fresh. You can toss in fruit juces and milk or soy milk. Fresh fruit and protein powder. Good luck and please - I know you're not necessarily close to a cancer center but go for a second opinion. The usual treatment for tongue cancer : biopsy, initial diagnosis, MRI, CT, PET scan one or all of the above. I had an MRI and CT canada is not a fan of PET SCANS. surgery - removal of the tumor, and possibly a neck dissection dependent on your dr. and scan results. All tissues are sent for biopsy, results, will determine radiation, and or chemo. Since you've been diagnosed with microscopic cancer, and it's been removed your results will determine the rest of your care, but a scan is important this cancer can be aggressive, even microscopic... I know people who've had a small tumor, but still had it in their lymph nodes. Good luck!
Last edited by Cheryld; 07-22-2011 02:35 PM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2011 Posts: 19 Likes: 1 Member | OP Member Joined: Jul 2011 Posts: 19 Likes: 1 | Hi when you were diagnosed did the biopsy show what what you had right away? Like my biopsy the dr said severe dysplasis with microinvasive carcinoma. He told me that he expected we were getting this in the very early stage. I did have some pain in one small spot where he did the biopsy the biopsy was 3 mm deep and he estimated the dysplasia around 1 mm deep how reliable is the analysis that this is where i am at? Would I then be considered at level 0 what is my prognosis? Is what you are saying nothing is definitive without scan? When you were diagnosed what did your initial biopsy show? | | | | Joined: Jul 2011 Posts: 19 Likes: 1 Member | OP Member Joined: Jul 2011 Posts: 19 Likes: 1 | Brian how do I know if dr was able to get a complete removal. Are there any physical symptoms of early oral cancer. How do I know exactly where I am at? On biopsy dr took biopsy 3mm deep and he estmated dysplasia was 3mm deep? How reliable is this? Thanks | | | | Joined: Jul 2011 Posts: 19 Likes: 1 Member | OP Member Joined: Jul 2011 Posts: 19 Likes: 1 | If i have severe dysplasis and microinasive carcinoma then do I have a tumor or in the early stages do you not have them? | | |
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