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slash #121133 08-30-2010 07:40 PM
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The vast majority of members of the American Academy of Otolaryngology are not head and neck surgeons with the added specialty in concology regardless of the number of years of training. I was treated by one for my surgery portion of my process, so I have no issue with them, you just have to get to one that has the additional training. I think that most people do not understand that there are various levels of training and skills within the otolaryngology community.

I don't think that oral surgeons should be cancer treatment people either. But the one that this poster saw did what he was supposed to do as I said. He got a finite answer without watching and waiting, that now needs to be explored by people further up the food chain. No one suggested that he treat cancer. I suggested that if this was dysplasia, that they routinely take that off all the time.

I also stated clearly that were it me that I wouldn't wait for this to become something else but get rid of it now while it is dysplasia. We have had too many people be "followed" through their dysplasia right into its development into cancer. How do you think we dropped the death rate in cervical cancer by 71% in 10 years? Women screened by their GYN's and found to have precancerous dysplasia, had it removed as such, and it never had the chance to develop into something greater. They did this without ever seeing an oncology specialist.


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.
Brian Hill #121151 08-31-2010 10:04 AM
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Thank you all for your support, information, advice and concern. I will keep you updated. I have to go to the doctor today and set up an appointment to take care of this thing. If it takes too long I am just going to go back to my Oral Surgeon and let him do what he wants to do. Time is not my friend right now and I did get a second opinion when the pathologist suggested a complete local excision on the pathology report. However, if I can get into kaiser in a short period of time, I will let them decide who is going to remove the dysplastic cells. I appreciate all the information. I started worrying too much about it and I am glad I found this forum. I now have a better idea what this is and what I need to do. My Oral Surgeon did suggest I get a second opinion, which i will if I can see and Oral Surgeon or an ENT at Kaiser soon. If not, I go back to the original Surgeon and let him do what has to do. Thank you all for helping me relax a little. Its weird i was fine at first and my attitude was "this diagnosis was better than the alternative," replaced by fear and worrying. I am still a little worried but to quote Brian "But take solace in the fact that this isn't cancer. It is a step towards cancer, and a very early find which means a minimum of issues taking it off, and to the rest of your life. This one sentence and the concern and generousity of everyone on this forum has helped me alot. Words cannot describe how grateful I am to all the posters on here. Thank you ChristineB and Leslee for your input as well as Slash. If I missed anyone, I apologize but I do appreciate your input as well. I will post again soon. Speak to you all soon.


Diagnosis Date - September 10, 2010
Diagnosis - SCC, T1N0M0, Well Differentiated.
Surgery to remove infected gums and three teeth.
Clear margins and teeth.
Life goes on. My 4 kiddos demand it and keep me sane.
My wake-up call and I listened. Have more listening to do.
groc25 #121158 08-31-2010 05:52 PM
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Groc, wishing you all the best with your decisions. Im glad that you will get this taken care of before it turns into anything else. You are really very fortunate, I hope you can see that. Please dont be a stranger, keep us updated. Best of lcuk.


Christine
SCC 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 smile
ChristineB #121171 09-01-2010 09:25 AM
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groc25 Offline OP
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Thank you very much to all of you. So I went to my doctor last night and he gave me the referral to the Kaiser facility in Los Angeles, CA. I guess this is where all the Oral Surgeons and ENT's and anybody important have decided to take up residence. My doctor said that if I did not hear back in a week to let him know. I told him that was unacceptable as I do not want to take a wait and see approach. I guess they want me to because of my age. I am 36 and do not fall under the risk factors and I do not know my family history because I am adopted. Regardless of age I told him I want this out now. He told me wait a day or two and call him back. Today i think I will look them up and make my own appointment since the referral is in the system. I know I am fortunate. Really fortunate. It just was not what I was expecting and looking up this stuff was not good. It fed into my hypochondria. Although I did find some very interesting statistics on this. I hope that i can schedule something by the end of this week or by next week. If not, than I go right back to the original oral surgeon. I think he still has the scalpel in hand awaiting my arrival. smile I also found out last night that I may also have sleep apnea and asthma. What a night!!!!! LOL.

Thank you to everyone. I really do appreciate it. I will never be a stranger. I will keep you all updated and even after this ordeal is over, I will stop by just to say hello, If that is okay?


Diagnosis Date - September 10, 2010
Diagnosis - SCC, T1N0M0, Well Differentiated.
Surgery to remove infected gums and three teeth.
Clear margins and teeth.
Life goes on. My 4 kiddos demand it and keep me sane.
My wake-up call and I listened. Have more listening to do.
groc25 #121231 09-02-2010 10:35 AM
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Good Afternoon,
I just found out today that I have an appointment with the ENT/Oral Surgery department on 09/07/2010 which is good news. I do not have to wait anymore. I was worried Kaiser would take their time with seeing me. I will post what happens next. I am kind of nervous and kind of at ease now. Thank you again everyone for your support.

Talk to you soon.


Diagnosis Date - September 10, 2010
Diagnosis - SCC, T1N0M0, Well Differentiated.
Surgery to remove infected gums and three teeth.
Clear margins and teeth.
Life goes on. My 4 kiddos demand it and keep me sane.
My wake-up call and I listened. Have more listening to do.
groc25 #121232 09-02-2010 11:47 AM
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Thats excellent news about your appointment. Start making a list of all your questions. Also take someone along for an extra set of ears. Good luck smile


Christine
SCC 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 smile
ChristineB #121235 09-02-2010 01:58 PM
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Posts: 25
groc25 Offline OP
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I have plenty of questions to ask but I will wait until they do what they have to do. I am at ease but I am also really nervous. I know I am probably being stupid since the initial diagnosis was "features of dysplasia" and I have read that it is not common to turn malignant. I am gathering there was a bit of "I do not know what it is but it resembles dysplasia." I feel kind of bad explaining this since most or all of you have gone through worse than what I am going through. We shall see about taking someone with me. Everyone seems to be busy since it is the first day back from the holiday. I will keep you posted. Thank you again.


Diagnosis Date - September 10, 2010
Diagnosis - SCC, T1N0M0, Well Differentiated.
Surgery to remove infected gums and three teeth.
Clear margins and teeth.
Life goes on. My 4 kiddos demand it and keep me sane.
My wake-up call and I listened. Have more listening to do.
groc25 #121270 09-03-2010 03:42 PM
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Posts: 25
groc25 Offline OP
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I know this might be overkill but thank you all for your advice. I do have a question, can a dysplastic lesion come back after removal? I don't think the oral surgeon got it all and mentioned cutting out a wider area. The reason I ask is that another growth has formed. Its not as big but still in the same area. It probably does not help that I have touched and constantly probe it with my tongue. I read that they can grow back but i was curious if anyone has any experience with it or any thoughts. Thank you for your time.


Diagnosis Date - September 10, 2010
Diagnosis - SCC, T1N0M0, Well Differentiated.
Surgery to remove infected gums and three teeth.
Clear margins and teeth.
Life goes on. My 4 kiddos demand it and keep me sane.
My wake-up call and I listened. Have more listening to do.
groc25 #121298 09-04-2010 12:07 PM
Joined: Sep 2008
Posts: 711
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It always helps to have someone with you at these appointments as they may think of questions that you don't and 2 memories of what is said make for more accuracy. Best of luck to you.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
ChristineB #121462 09-07-2010 08:12 PM
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Posts: 25
groc25 Offline OP
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Well, I saw the doctor today and at first he had me pretty scared. Talking about removing teeth and that it could be Cancer and all. He sent me for a CT Scan of my head and neck. He was reading the results and said the neck came back clean and so did my teeth. The one exception was underneath a bridge I have. He said the bridge made the scan somewhat unreadable on the scan. I have to go to the dentist to have the brige broken off but oh well for now. He said it could be a tumor but also could be some bone left over from the tooth extraction. He thinks it is all Dysplasia and I am scheduled for Surgery on Friday to remove it all. He said the bone looks good so there is no need to remove any teeth. I will be on soft foods for two weeks but after that I should be clear. I want to thank you all for your advice. The doctor I went to see is awesome. He had a proactive attitude and set everything up for today and surgery for Friday. Even when the nurse told him he did not have room for me for Surgery on Friday, he told her to make room. I know that there have been some unfavorable opinions about Kaiser, including mine, but it could have taken days to weeks to get the scans and see the necessary people to get the Surgery done. This doctor is awesome and I told him I would try and find a way to rate him or something like that.


Diagnosis Date - September 10, 2010
Diagnosis - SCC, T1N0M0, Well Differentiated.
Surgery to remove infected gums and three teeth.
Clear margins and teeth.
Life goes on. My 4 kiddos demand it and keep me sane.
My wake-up call and I listened. Have more listening to do.
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