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#173962 11-14-2013 11:57 AM
Joined: Nov 2013
Posts: 18
CherylS Offline OP
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I was diagnosed with tongue cancer after visiting the dentist and this diagnosis was confirmed 2nd October after a biopsy. I am being admitted into hospital for a partial glossectomy to remove the tumour and flap from my forearm will be used to reconstruct. I'm also going to undergo a neck dissection and a decision about radiotherapy or chemo will be made within two weeks. I can't tell you how scared I am but I guess most of you already know the feeling. As a teacher I'm probably more terrified about the after effects on my speech than anything. Part of me wants Monday over and done with and part of me dreads Monday's arrival. It will be the last time I look and sound like me!


Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
Joined: Jan 2013
Posts: 1,292
Likes: 1
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Hi Cheryl,
Glad you found OCF. There are lots of caring and experienced folks here who have gone through similar procedures. You will get through this although the road may have a few bumps. Best to you, don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Nov 2013
Posts: 18
CherylS Offline OP
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Hi Don,

Thank you for your reply. This site seems so positive so I'm very glad I found it too. As I live alone it's nice to know I have somewhere to vent my anxieties in the wee small hours when I can't sleep. I'm a very positive, cup half full, kind of person but the fear can bubble up when you least expect it.


Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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Cheryl - I'm a Cheryl too - I gave a very in depth description of your surgery and recovery on the post two below yours - newly diagnosed - kazy - I have been through your surgery - you will look like crap for a few weeks but you should be back to normal by week six. And how well you speak will be determined by how much tongue they take and the skill of your surgeon. Hopefully you are being treated at a CCC - best of luck the surgery is very daunting but honestly it's very doable, hugs and welcome

Last edited by Cheryld; 11-14-2013 03:47 PM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Nov 2013
Posts: 18
CherylS Offline OP
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Hi Cheryl,

I am being treated at Norwich University Hospital in Norfolk, England. They have a specialist head and neck cancer unit. It's the plastic surgery dept who are doing my op. I will look at the post you've mentioned. Thank you x


Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
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Welcome Cheryl. Waiting for surgery can be a frightening time. Try your very best to stay busy with doing productive things. It will help you pass the time.

Wishing you all the best with your surgery. 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
Joined: Aug 2013
Posts: 54
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Posts: 54
Cheryl. Welcome to the group. I too am a teacher! I went through your exact surgery on September 11 of this yr. I was back in the classroom full time on Octobef 21. My speech was/is a bit slurred but understandable it gets better each week. I had about 1/3 of my tongue replaced with the forearm flap. My neck is still a little swollen but also getting better. The surgery will be daunting and recovery slower than you want, but you will be classroom ready in a about 6 weeks. Rest and be good to yourself during recovery! Let others take care of you and don't try to be Superwoman! Get out and walk around during your recovery so you will be ready to stand and walk at school. But don't over do it. Listen to your body. Cheryl did an excellent job describing the surgery. I HATED the trache. It and I fought for a week and I dreaded getting that thing suctioned out......but it helped me breathe so I tried to make peace with it. I ended up needing a second trip to the OR late in the week of my 10 day hospital stay and was glad the trache was still in for that. Other than that and the weird sensation of being fed through a feeding tube down the nose......it was doable. I will be praying for you on Monday. Please get back on here as soon as you can and give us an update.


48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
Joined: Sep 2012
Posts: 381
"OCF Canuck"
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Posts: 381
Hi Cheryl, I also had the same surgery, and am a barrister, so I talk for a living. I was back to work 3 weeks after surgery, and now, a year later, people think I have a slight accent, and have no clue that I had surgery. In June I spoke at a conference, and my other presenters had no idea.

As for the traech, I had no issues other than the frustration of not being able to speak while it is in. I'm a talker and it drove me nuts. Bring an ipad or pen and paper (lots of it) to the hospital so you can communicate.

I had a forearm flap too, along with a graft from my leg to cover the forearm. The graft is like bad road rash, and oddly that was what actually hurt.

As soon as you can, get up and get moving in the hospital. Laying in bed is (a) very boring and (b) slows your recovery. Hopefully you have a PT that will come see you a couple of days after to give you exercises. I walked the halls so much, I had the ward memorized, but it got me out of hospital early, and home, where it is much easier to rest and recuperate.

Good luck on Monday!


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Nov 2013
Posts: 18
CherylS Offline OP
"OCF across the pond"
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Posts: 18
Well, here I go. I'm off the hospital now for surgery tomorrow. Thank you all for your support and best wishes to this point and I'll hopefully be back in 10 days or so.

Cheryl smile
xx


Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
Joined: May 2013
Posts: 188
Likes: 4
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Joined: May 2013
Posts: 188
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Best to you Cheryl.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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