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#195354 11-07-2017 09:56 PM
Joined: Apr 2017
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Hi all. So, as the title suggests....my Cancer has returned. My first surgery was May 3rd, 2017, but margins were not clear, followed by a secong surgery on May 10th, 2017... to remove more of the Cancer. This time they said the margins were clear. August 2nd, 2017 was my last radiation treatment. It was a horrible experience which you can find out about on my previous posts. So, here I am, November 7th, 2017. Quickly recapping, i noticed a lump appeared a little further back on my tongue, while on a celebratory vacation, to ironically celebrate the final end to my Cancer. When i returned saw the doc, he examined it, and went straight to a biopsy. Results back today. Cancer. Same kind. Squamous Cell Carcinoma. My surgeon, suggests that I go to Emory to have my surgery. I will have a much more invasive surgery, which will most likely involve a partial, if not total glossectomy. With reconstruction to follow. At this moment, that is all I know. It has been a crappy day. And did I mention the reoccurring stupid...#$%$@#$, THRUSH!!!!!


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: Apr 2017
Posts: 80
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How frustrating. Thinking of you and sending my best. Emory is a great hospital.


Keep fighting friends!

Me -- currently 49 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!
Joined: Apr 2017
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Thanks Stef. I knew it was a possibility, but i didnt think it would happen so soon after rads. I hope you are doing well. Sending you lots of wishes and prayers as well.


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
Posts: 10,502
Likes: 1
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Wendy Im very sorry to read about your recurrence!!! Ive been there myself and know how defeated you must be feeling. Hang in there and do your best to stay positive.


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: Apr 2017
Posts: 61
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Not going to lie, I'm going in to this a bit scared. But, with the experience and knowledge of everyone here on the forum, it makes it less scary. I know it will be tough, and this time around, i know the pitfalls to avoid and how to better take care of myself and take the advice given by those who have been through it. Thanks Christine. You have been a wondrous help.


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: Oct 2012
Posts: 1,251
Likes: 2
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Posts: 1,251
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Wendy, i’m sorry to hear that you have a recurrence. My husband had his six months after he finished his rads. So, I know how it feels. I’m glad to see that you have a positive attitude towards the upcoming treatment and that you will face it bravely. Good for you. Do let us know how things go. Keeping you in my thoughts.


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.
Joined: Sep 2016
Posts: 111
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Posts: 111
Wendy,

I think the second diagnosis is harder to hear than the first because you already have an idea of what amount of energy and will power it will take to become cancer free.

So sorry to hear about this.

Hemi or full glossectomy.... That's a tough one. Please be sure you ask as many questions as possible prior to the surgery and have someone around as much as possible during your recovery.

Hope for the best, partial resection, but plan for the worst.

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 2013
Posts: 345
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Posts: 345
Mine came back about that quickly, too. I think these tongue cancers are just weird. I hope all goes well this second time around, and that foreknowledge makes at least some part of the process go easier for you. ((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Apr 2017
Posts: 61
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Hi all! Update time. Its a little over a month since surgery. Had a hemiglossectomy, tongue reconstruction from left forearm "free flap", skin graft from thigh, tracheotomy, ng (nasal feeding tube), cath tube, lymph nodes removed from my left side. Whew! Not going to sugar coat it, it was rough that firat 2 weeks. But now that i past that hurdle, I got stronger and better everyday. I cant tell you the difference a few weeks make in healing. Before, i could not taste anything, except the Most extreme flavors, salty, sweet. Once i began to swallow on my own, i realized all my taste came back, no gradual about it. I CAN TASTE AGAIN! HALLELUJAH! Now mind you my tongue is still crazy weird. The shape is wrong and still a bit swollen., But im swallowing solid food....yeah! Way excited! Now it may bit little bits at a time with lots of water chasers to get it down, but, I hadnt had regular food since all this began on April 2017. My weight has stabilized. Im down a 100lbs since it all began, havent gained any back, but havent lost anymore so kudos to me. Anyway, thanks to Emory University Midtown, my recovery and care was amazeballs!


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: Apr 2017
Posts: 61
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
Oh and speaking ...will most likely be an issue forever, but, do not be discouraged. You can be understood. Doing mouth exercises, drinking fluids and practice all the tume, it gets better. It becomes a problem if you overwork your mouth. The longer I talk or eat, I become less coherent. I have confidence that I will find my new normal, and if you are going through something similar , you will too.


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 2014
Posts: 86
Supporting Member (50+ posts)
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Joined: Sep 2014
Posts: 86
Glad to hear that your ability to taste food and speak has returned. I had a similar recovery timeline with a similar surgery. Although I didn't have that whole terrible reoccurrence thing to deal with (knock on wood) and I had my rads after my surgery, so I lost my sense of taste twice and it recovered both times.

For me, almost four years later speech can still sometimes be a hurdle. I still have difficulty making certain sounds, so I will occasionally have to come up with a different word to describe what I was trying to say when someone does not understand what I had said. Or sometimes resort to spelling something out in phonetic code because people think I said G when I was trying to say D (Whiskey Tango Foxtrot, haha). But no other real complaints so far.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Apr 2017
Posts: 61
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Joined: Apr 2017
Posts: 61
So happy for you. I've found that learning from others experiences have helped me the most.


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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