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Joined: Apr 2017
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Just giving a quick update. Not feeling too bad after the first surgery. First 3 days...i had the most terrible earache, if i tried to swallow. The saliva was super thick and gross...lol. Still couldnt get anything to go down but liquids...very liquidy. It was after the 5th day that things got better...no thick saliva, could swallow pudding...and managed to talk ok....little slurred but understandable. Stitches started coming out like crazy. It bothered me so, i went to see the ENT, he said that was normal, but ....he dropped the bombshell...Cancer was still present in the margins of the tumor that was removed and he felt that removing more would improve my chances , along with radiation. So, tomorrow is the next surgery...not healed from the first, but he said that is good. Will keep you updated on the ongoing journey. P.s. i really scared myself silly before the first surgery. I didnt feel a thing! Even after, the recovery , was not as bad as my mind was making it out to be. Your fear is your biggest hurdle. Stay strong, my friends.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
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That's the spirit, Wendy. Hoping for the very best outcome for you.



Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Posts: 39
Wendy,
Will be keeping you in my thoughts and prayers that you have a very positive outcome and are soon on the road to recovery and back to your normal life. Keep fighting, you can do this!
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
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Thanks so much gang! You have been so much help to me. Ive been terrified without answers. But reading through the forums has helped me deal with the stress.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Joined: Jun 2007
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Thanks for the update, Wendy! It sounds like you are doing very well with your recovery.

Your doctors are on the ball with doing the next surgery to try getting clean margins. You must be upset about this, I know I would be if I were in your situation. Hopefully there will be clean margins this time.

I know how lousy it is being stuck in the hospital. Please update when you are up to it.

Wishing you all the very best 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
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Thank you for the update Wendy; I recently had surgery and have the same ear pain.

Regarding UCSF and second opinions - I only recently heard that they offer financial aid. Since I didn't hear that from UCSF directly will contact them for info. Might be useful in the future.



Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
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Next update, sorry dont know where to post this. Will be starting Rads in mid June, and getting everything setup for it beginning June 2nd. Dont know what or how I will take it, as it seems that stress from all this is causing some kind of funky fatigue. I have absolutely no energy, yet I cant sleep. Even taking something for sleep doesnt help, which is why this is being typed out at 1:12 am. Cancer team seems nice and well prepared for me, which is good...as my ENT, is a former miltary doc, and has the bedside manner of a table lamp. Anyway, i will keep you posted. Thanks again for all your help, I dont know what I would have done without this forum.

My family, is very supportive and very over the top.."you are going to be fine, you got this!, Piece of cake!, Wont be so bad, what are you so worried about " attitude, that it is beginning to drive me nuts. Ive heard , how are you, are you ok, ...like a couple of dozen times a day, from family and strangers. I know everyone means well, but im still wrapping my head around the whole Cancer thing. It has been 1 month as of today. Biopsy, diagnosis, 2 surgeries, pain, no eating, no sleep, constipation, nausea, loss of appetite,crazy freaking saliva, with a myriad of doctor visits and schedules, poking and prodding, im losing my mind. WHEW!!!! Well, enough venting for me, lol. Sorry to put all this out there, but for the life of me, I cant seem to say this out loud to the family, I dont want them to feel bad or unappreciated...and it seems like everyone here has been through it all and so much more, that it makes me feel bad to even attempt a comparison. Thanks for letting me ramble. Good luck everyone! G'night.

Last edited by WendyinGa; 05-24-2017 10:30 PM.

04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Joined: Sep 2016
Posts: 111
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May I offer you some advice?

Couple of things........You are the one going through this. I've learned that most people, even close family, only want to hear positive responses. I know they mean well with their questions, but if you're honest with them about how you actually feel they'll probably stop asking. (They ask and offer supportive statements to reassure themselves just as much as they are concerned about you.)

The ENT with the table lamp manner. So What? All you need is for him to do his job and do it to the best of his abilities. Some doctors have a great combination of surgical and social skills, others not so much. Seems like you have the former.

Create some mental / emotional space for yourself. Stop answering the phone and / or responding to texts or emails. Take some time to get yourself in the right mood mentally and emotionally. Try to get some quality sleep.

Unfortunately, oral cancer is a bitch of a diagnosis and it takes a lot of time, effort, and strength to become cancer free.

Good Luck


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
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I know exactly what you are going thru can be draining mentally. People genuinely mean well and do not fully understand what hearing "you have cancer" means to a patient. They do want to help (but dont usually know what to do) and encourage you so those annoying phrases are repeated over and over. People you know when they find out about your cancer diagnosis change. Some of those who you have always been closest to may run for the hills leaving you scratching your head not understanding the abandonment. Others you barely know will step up and be your new BFF and champion. Much of this is due to people not being able to face your mortality or even worse they project this onto themselves and are quickly overwhelmed with negative and scary "what ifs".

Your mind must be spinning being you were only first diagnosed one month ago. Thats like lightening speed to go thru discovery, diagnosis, 2 surgeries and into recovery. You need time to process all that you have been thru and all you are facing. In time you will learn to accept the situation and put your energies into fighting the enemy... cancer.

Always remember, we are here for you. Its ok to ramble, vent, cry, yell or anything else you need to do. We have been thru it so we completely understand all too well what you are going thru. Hang in there, we got your back 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
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