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#189 07-31-2002 04:36 PM
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Sandra Offline OP
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My oral surgeon called me today to tell me that the lesion he removed last week from my tongue
and floor of the mouth was cancerous.
The oral pathologist had previously told me that the biopsy results showed that my lesion
was severe pre-cancerous. The oral surgeon said that the lesion was on the surface and had not
invaded deeply. He has not suggested any tests to make sure my lymph nodes are ok.
From looking at the area it looks fairly big (about an inch) and he did cut quite deeply. Should I ask to have
my lymph nodes be checked out? I have also received mixed answers from both specialists (oral pathologist and oral surgeon) about whether my tongue lesion could have caused the sore throat I had for about 5 months. Any feedback about what kind of follow up I need would be appreciated. At this point I don't feel comfortable taking his word that they caught it and that it has not spread. What should I be doing now?

#190 08-01-2002 07:13 AM
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I think you should do whatever makes you feel comfortable. Don't leave yourself with any worries...that will make life horrible for you. You need to be an advocate for yourself...you are the patient and should have all of your questions answered.

Have you seen an ENT yet....you just mentioned an oral surgeon and oral pathologist. I would go to a cancer specialist and talk to them. It would clear up alot of your fears.

I was lucky because my doctor takes a very aggressive approach to oral cancer. He removed all of my lymph nodes along with the affected tongue. I also am undergoing both chemo and radiation to make sure everything is gone. It's a tough road to go down, but hopefully it will keep the cancer away forever.

You shouldn't be feeling like you are.....you need to go out there and find someone to give you the answers you need. Once you become better informed, it will make your life less stressful. You will have everything you need to make solid decisions about your future.

Stay strong!!


I survived because I kept hope alive!!! Live, laugh, love and keep fighting hard.
Jeanette
Stage 3 oral cancer...over 60% of tongue and all lymph nodes on right side removed...July 2002.
Chemo and Radiation...ended September 2002.
#191 08-01-2002 12:03 PM
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If you have not had a complete head and neck work up including an MRI of both areas, your doctors have not been thorough in their pursuit of things. A carcinoma in situ, can indeed be on the surface and not have progressed to other areas, but the only way to know for sure is to do the complete diagnostic protocol, including the MRI's. Once you have done that you should feel more at ease with a radiologists opinion added to things. It sounds like the surgeon has already removed the suspect tissue, and if so, the pathologist should be able to say to you that all the margins were cancer free, and he should state so in his written report. That means that the surgeon did indeed get all of that particular cancer. But whether that cancer threw out a node metastasis......he can't tell you with out the scans.


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.
#192 08-01-2002 05:04 PM
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Sandra Offline OP
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Thanks for your replies. I am a 30 year old non smoker and non drinker and it was my dentist who
found the lesion on my tongue. I waited 7 weeks to see the oral pathologist and had the surgery within
a few days of the biopsy results. I was in the oral surgeon's chair for less than 45 minutes for the
procedure.

Brian or anyone else : What is a complete diagnostic protocol?
You mention MRI's.....how many and of what areas? (you mention "both areas")
What is a complete head and neck work up?
What specialists do I need to see?

I had about a 2 minute telephone conversation with the oral surgeon so I obviously have a lot of questions.

Thanks to everyone for your advice and support.

#193 08-05-2002 03:02 AM
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Hi, I can only tell you what happened to me,makes me wonder how the rest of us got here. My dentist sent me to oral surgeon,He did 2 biopsys and 1 x-ray.He sent me to Geisinger Medical Centre in Danville, Pa to a ENT. ENT confirmed that I needed to have tumor removed,sent me to Radiology for MRI, not full body like you see on TV, just head and neck, they take tons of pictures in every direction possible, Then I went back to appear before a tumor panel, 12 to 14 Doctors looked at me with opinion and with the idea they might be needed with my future care. There were 3or4 ENT's plus their interns, bone cancer specalist, lymp node cancer specialist( I didn"t like him he pinched me hard), DDs,MHA, and 2 plastic surgeons and 1 or 2 interns.I dropped bone and lymph node specalists after operation and all clear in this area.Now my cancer was Stage 4 and growing so jumped pretty quick we spent a week going in and doing tests to get ready and they operated quickly.It would not hurt for you to see an ENT and have him run some tests for your peace of mind.You are probably fine, but if you are worried ,doing something will only help. gnelson


gnelson, StageIV, cancer free since Nov.9,2000

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