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#195035 - 08/23/17 10:33 PM question  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
I hope someone here with more experience than me can answer this question-when squamous cell carcinoma of the tongue reoccurs , does it usually come back in the same place or somewhere different. I had surgery and a radical modified neck dissection a little over 3 months ago, and am now having headaches and ear pain intermittently on that same side. I have a appointment with my surgeon tomorrow and am praying for good news telling me it is nothing, but of course am scared and worried to death. Trying to stay positive however. Any info anyone can offer would be greatly appreciated. Thank you all so much and prayers to you all for blessings and better days ahead.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195049 - 08/24/17 08:10 PM Re: question [Re: Camille]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Im sorry I didnt see this til now, Camille. A recurrence can pop up any place in your body. The first recurrence I had in 2008, the new tumor was almost the exact same site as my original tumor. It was only a teeny tiny white dot, about the size of the head of a pin. Having a recurrence is not as common as most people think. Most patients do not have recurrences, they go thru it once, get treated, recover and move on with their lives.

Best wishes with this and please let us know how you make out.


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
#195053 - 08/25/17 12:40 PM Re: question [Re: Camille]  
Joined: Sep 2016
Posts: 105
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 105
Except when the ENT says something like -"now thanks not at all what I expected !"

Yes they can occur anywhere, however, I seem to recall my ENT telling me after completing my first treatments that oral cancers in younger people do tend to reoccur and "reoccur with a vengeance" between 15 to 20 years after the first. He didn't have any concrete evidence or studies, it was just from his personal experience. The second diagnosis may be a result from the initial treatment......again, he was speaking from his experience only. We were told to watch the same site in the mouth, brain, throat and lungs in particular.

(I really hated proving him right)

Good Luck

Last edited by bjmpittsburgh; 08/25/17 12:41 PM.

1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing

#195055 - 08/25/17 11:41 PM Re: question [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi Christine,
Thanks for responding to my post. I had my appointment yesterday with my surgeon and he said my tongue, ear , throat and neck all looked normal. He examined me and said he saw nothing or felt nothing unusual. He is going to schedule me for another PET scan which he explained to me is normal procedure to do about 3-4 months out from surgery. Of course this has increased my worry and stress even more, and I'm sure I will stress till I have it done and know the results. My blood pressure was high yesterday (which it never is) but I don't know if that could be due to all the Advil and Tylenol I have been taking lately frown. Anyway now I guess my next step is another PET scan. Still having a slight headache today but thank goodness my ear hasn't hurt today. Hope you have a wonderful weekend.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195056 - 08/25/17 11:49 PM Re: question [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
bjmpittsburgh,
Thanks for answering to my post. I still don't understand or even comprehend how I ended up with squamous cell carcinoma of the tongue. I have never smoked a day in my life, have never used tobacco products, and don't drink. My tests all came back negative for HPV and he tested for 3 different strains of it. Guess it's just one of those things I will never know. When I was diagnosed with melanoma in 1985 I knew it was from my own stupidity by burning myself at the pool constantly and not using sunscreen ( we used baby oil with mecurocrome) and using tanning beds later. Everything wrong I could possibly do to my fair skin I did and reading all the risk factors later for melanoma I pretty much had them all (blonde hair, blue eyes, fair skin, burns easily, etc) but with this cancer I just don't know where this came from.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195058 - 08/26/17 10:48 PM Re: question [Re: Camille]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Camille, you arent alone in not having any risk factors but yet have developed OC. I believe its 5-7% of all OC patients have no known cause. There is so much that is not known about our disease and why some healthy younger adults get it while very similar others do not. I know that probably doesnt make you feel any better. But at least now you know you arent the only one.


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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