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julieSW #125818 12-07-2010 06:00 PM
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Normally the oral surgeon (or whatever doc preformed the test) will tell you the test results. The oral surgeon would be the best person to ask since they are able to answer any questions you may have about the results or if anything further needs to be done. If they are forwarding info to your family doc then they should also have the test results.

Every single doctor I see and test I go for I have forward their info to my family doctor. That way I have one place where all my medical records can be found. Since my first diagnosis with oral cancer til today, I have seen at least 10 different doctors for various things.

Best of luck with the results.


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 #125830 12-07-2010 07:35 PM
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Thank you Christine. I so appreciate your input and too wish you the very best.


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julieSW #125835 12-07-2010 09:09 PM
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You should be able to ask your regular doctor since they will have the report that the OS sent them. The report will have all that information on it. I am one of the few on this site that have had cancer of the hard palate 9(it is more rare). The check ups every 3 months is alright. I would just be vigilant in keeping an eye on everything anyways. I found my recurrence that way. If you feel comfortable with this oral surgeon I would ask him about the other two spots. If they are something that is going to consume your mind I would talk with the oral surgeon and he can biopsy them as well to ease your mind.

I pray that this is the last for you and things are positive from here on out.


31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
BrandyK #125836 12-07-2010 09:22 PM
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Thank you Brandy,
I am so sorry you had to go through what you did! Did you catch the re occurrence? How long was it after they removed your spot that it grew back? Did you notice the white spots coming back? My oral surgeon was so so vague and not willing to give much information up unless I keep asking each individual question. What exactly were you diagnosed with after the first biopsy?


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julieSW #125840 12-07-2010 10:31 PM
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As I say life happens. Yes, I caught the recurrence. It was right after my two yr check up and was in a different spot in my mouth than the first spot that diagnosed me. The spots that I noticed in my recurrence were more red if I remember right. They could have had some white but I think they were red. I was diagnosed with SCC with bone invasion of the hard palate.

If I was not getting the information I needed from a doctor that would not make me feel comfortable and I would try to see another one if possible. I know sometimes it is hard but if there is another oral surgeon or one that is referred to as a head and neck surgeon I would go see them. They usually have seen more and can give a little more information. I am VERY picky about my dr's.

You are very welcome. Anything I can do to help you get through this as with anyone else on here I will do. I was blessed with an awesome oral surgeon. Let me know if you have any other questions


31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
julieSW #126551 12-20-2010 02:25 PM
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When we are scared, our minds leave us sometimes. Do not get down on yourself for not asking the right questions, I usually think of them after I walk out of the office when my brain has had a chance to settle down a bit. I find it helpful to write my thoughts and questions down so I won't forget the second one after asking the first.


Squamous cell, tongue
First biopsy 2006, Stage 1 2008, 2010, 2012, 2013
To date: 13 surgeries & 3 nonsurgical biopsies
BrandyK #128801 01-30-2011 10:38 AM
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Brandy -
Thank you for your reply. Sorry the holidays have just been a whirl wind. I hope your holidays were wonderful!!! I decided that I was going to put all of this behind me because it was removed and it was consuming too much of my worries. In the meantime I had a checkup with my new MD (female doctor) sort of a meet and greet. I never really had an MD family doctor. When I did go I would see the local NP or my now retired cardio. So this prompted me to find one since I am getting older and these things are creeping up on me. (Things such as periodic slurring of sentences and headaches) So off she sends me to a neuro, She does some simple tests and sends me off next week for an MRI. I have no idea why, she said just to check head and neck for pinched nerves. but in the meantime I noticed the lump that was removed in the roof is back and it is much larger than when it was removed. I just had it removed the end of November. I have a check up in another month (that will be the 3 month check with the oral surgeon). Do you think it will be fine to wait for the checkup, it is only a month away?


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Antholscher #128802 01-30-2011 10:42 AM
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Thank you - I will write my questions down next time. Wouldn't it be wonderful if after you see a doctor they mail you a summary a week later of what you discussed and the diagnoses? That would sure help me. I tend to freeze up and then I only hear a few things that they are telling me and don't think of other things to ask.

Thank you


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julieSW #128842 01-31-2011 08:53 AM
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Hi Julie: You've come to the right place. I am fairly new, too. I was first diagnosed with squamous cell carcinoma on 12/23 and am starting my treatment (radiation and chemo) today. (It took 5 weeks to find the primary tumor and set up treatment.) It's quite a journey. But remember even when you feel powerless and in pain, you are in command. You are the navigator of this journey. I wish you all the best and will share whatever information I have that might be useful to you. -Michelle


SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
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Julie, I would see your Ent or whoever your are supose to have a 3 month checkup with right away as soon as possible. Better to error on the side of caution.

Last edited by wendys; 01-31-2011 09:54 AM.

Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

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