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#192144 04-01-2016 07:53 AM
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pati Offline OP
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I had cancer of the tongue which the cut out in 2005.Everything that was normal .pain,etc. Then in 2010 I had tumor somwhere they never found it in Feb.2011 I had 29 treatments of radiation and 3 chemos. It has been 5 years of good reports. Now at the same spot I have pain in my tongue again.It is painful but had it before and it went away but this time the pain has moved down to the end of tongue with pain a numbness.Dentist doesn't know why and sees nothing.I have an appt.at Duke cancer center with radioligist 4/26/16.Should I wait till the appt or see someone here in Va.Duke is 5 hours away.
from me.Can anyone give me advice on what to do?


PS... I forgot to say they took 17 nodes out one the last cancer.

Last edited by ChristineB; 04-01-2016 03:27 PM.
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Hi Pati, welcome to OCF! We will try our best to help you with your questions.

Unfortunately as you have found out, dentists often are not able to help oral cancer (OC) patients/survivors with their questions or problems. Dentists focus almost entirely on the teeth and are not usually trained or experienced to see anything else.

Im not sure why you are going to see a radiologist for your current issue. A radiologist treats patients with radiation, I dont think this type of specialist would do biopsies or OC exams.

I suggest finding an experienced ENT to give you a good thorough exam and if necessary do a biopsy. An Ear, Nose and Throat (ENT) doctor is who should be overseeing your case and seeing you from time to time to make sure you are doing alright. Make sure you find an ENT who specializes in treating OC patients and not the type who mostly puts tubes in childrens ears.

Recurrences are hard to deal with! For most patients it can be terrifying just thinking another round of OC could be a possibility even if only its a remote one. Pain does not always mean it could be cancer. Even though its in the same area as where you have had cancer before. Often OC shows no signs or symptoms before it is diagnosed, which is why often its not found until its later stages. If this would turn out to be cancer again, I would suggest going to a CCC to get treated. Off the top of my head, Im pretty sure Duke is a CCC, or thers Johns Hopkins in MD and Vanderbilt in TN. Heres the list so you can check what is closest to your area.

NCI Designated Cancer Centers


Ive sent you a couple private messages (PMs). Click on the tiny flashing envelope near the center of the menu line, next to the My Stuff tab. Make sure you take some time to click on the enclosed link and read thru the info. Its important to add a signature, directions are included in the link as well as info on how to easily navigate our site.

Im hoping you dont have anything seriously wrong, especially not another recurrence. Best wishes with everything!



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
Joined: Feb 2016
Posts: 4
pati Offline OP
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Posts: 4
Looking for pm now.Thank you for your reply .I will be seeing ENT on Monday morning in VA. I just found my Ent died at Duke in 11/15.I trusted him and upset over that.It may be nothing but needed to hear your info .Thanks pati going to find messages now.

Joined: Feb 2016
Posts: 4
pati Offline OP
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Joined: Feb 2016
Posts: 4
Can't find a flashing light any where

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Do you see the My Stuff tab? Center of the menu bar towards the top?

If you dont see the tiny flashing envelope, click on the words My Stuff. It will open a drop down menu and click on the word messages.

Im very sorry!!! I thought I sent it earlier, I just sent you the second message. The first one is automatically sent.


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

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