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Re: Just need to talk [Re: Sara G] #197454
10-20-2018 03:33 PM
10-20-2018 03:33 PM
Joined: Dec 2017
Posts: 3
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mrsdranchak Offline
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mrsdranchak  Offline
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Joined: Dec 2017
Posts: 3
Hi Sara--

I am right now sitting in a hotel in Tanzania on safari but in February I lost 3/4 of my tongue to stage 3 oral cancer on bottom of my tongue. The docs reconstructed my tongue with arm tissue with the hope that in time I would be able to talk and eat most foods again. After surgery recovery, I had 40 radiation treatments. I had white patches for 3+ years but at the time was recovering from a cirrhosis diagnosis and making some major lifestyle changes to survive that. I wish I would have addressed it earlier...

Anyway, I am well enough to be here although I think my husband planned this trip as a "trip of a lifetime" because at the time he was afraid it might be my last. But my doctors are good. I am right now completely cancer free.

You will get through this. I still have some issues with eating and talking but most people say they understand me just fine, even on the phone, and I can eat thick liquid foods orally, but while my tongue was rebuilt with arm tissue, I only have muscle tissue on the 1/4 of original tongue that is left.You will still have ALL your muscle. You will most likely have a complete recovery of speech and eating within a week or two, so plan on sleeping, reading some good books or watching trash TV. I slept ALOT at first.

I'll be praying for you, girl. If you ever want to talk let me know. MANY wonderful things happened in my life as a result of this journey and while it has been difficult, I would not change it for anything.


MrsDranchak
Re: Just need to talk [Re: Sara G] #197455
10-20-2018 03:36 PM
10-20-2018 03:36 PM
Joined: Sep 2018
Posts: 16
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Sara G Offline OP
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Sara G  Offline OP
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Joined: Sep 2018
Posts: 16
Denise,
I remember that app and plan on downloading it! No PET yet but I am going to ask. I am seeing my GP for anxiety next week- do you think I can take anxiety meds before surgery? They didn’t mention those but I think I will need it.
Thanks again- I am encouraged by you and appreciate your support!


42 years old, past smoker and social drinker
Lesion on left lateral of tongue identified and biopsied August 2016
Incisional biopsy outpatient surgery scheduled October 31, 2018
Re: Just need to talk [Re: mrsdranchak] #197457
10-20-2018 03:42 PM
10-20-2018 03:42 PM
Joined: Sep 2018
Posts: 16
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Sara G Offline OP
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Sara G  Offline OP
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Joined: Sep 2018
Posts: 16
mrsdranchak - THANK YOU! Even without a firm diagnosis, I am trying to use this as a positive in my life. I am changing parts of my lifestyle and reflecting more. I may/probably will take you up on that talk as this is something that, although supportive, my friends and family don't really understand. This forum has been a great resource for me and I just can't thank you enough for taking a moment to drop me a line.


42 years old, past smoker and social drinker
Lesion on left lateral of tongue identified and biopsied August 2016
Incisional biopsy outpatient surgery scheduled October 31, 2018
Re: Just need to talk [Re: Sara G] #197458
10-20-2018 06:15 PM
10-20-2018 06:15 PM
Joined: Jun 2007
Posts: 10,435
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
Posts: 10,435
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Wishing you all the very best with your upcoming procedure! Im hoping whats going on is not cancerous!!! Luckily the odds are greatly in your favor, most leukoplakia does not turn into cancer. Will the surgeon be doing frozen sections to check while operating if whats being removed is cancerous? That could be a very important step when talking about how much tissue will be removed. If the area isnt cancer then to me it seems much less would be removed, making your recovery much easier. The less removed, the less invasive the surgery would be which should also mean the less likely your speech will be affected. One concern of many who have had leukoplakia is it returns. If you see it return down the road, dont panic as this is very common and doesnt mean that area has become cancerous.

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
Re: Just need to talk [Re: ChristineB] #197461
10-21-2018 05:47 AM
10-21-2018 05:47 AM
Joined: Sep 2018
Posts: 16
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Sara G Offline OP
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Sara G  Offline OP
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Joined: Sep 2018
Posts: 16
Thank you Christine, all your continued good vibes and prayers are appreciated. Soon, I will have answers.


42 years old, past smoker and social drinker
Lesion on left lateral of tongue identified and biopsied August 2016
Incisional biopsy outpatient surgery scheduled October 31, 2018
Re: Just need to talk [Re: Sara G] #197511
10-31-2018 02:07 PM
10-31-2018 02:07 PM
Joined: Sep 2018
Posts: 16
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Sara G Offline OP
Member
Sara G  Offline OP
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Joined: Sep 2018
Posts: 16
Hi all- home from surgery. Doctor said it was clean and he feels good about it. Now I wait for results. Thanks again for existing, this forum has been a Godsend.


42 years old, past smoker and social drinker
Lesion on left lateral of tongue identified and biopsied August 2016
Incisional biopsy outpatient surgery scheduled October 31, 2018
Re: Just need to talk [Re: Sara G] #197512
10-31-2018 06:32 PM
10-31-2018 06:32 PM
Joined: Jun 2007
Posts: 10,435
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,435
PA
Great news!!! Hope you are able to rest and you're not in too much discomfort. Best wishes for a speedy recovery and a negative biopsy.


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
Re: Just need to talk [Re: ChristineB] #197517
11-02-2018 01:44 PM
11-02-2018 01:44 PM
Joined: Sep 2018
Posts: 16
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Sara G Offline OP
Member
Sara G  Offline OP
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Joined: Sep 2018
Posts: 16
Update: doctor called and while there is mild dysplasia, there is no cancer! So relieved!


42 years old, past smoker and social drinker
Lesion on left lateral of tongue identified and biopsied August 2016
Incisional biopsy outpatient surgery scheduled October 31, 2018
Re: Just need to talk [Re: Sara G] #197518
11-02-2018 03:11 PM
11-02-2018 03:11 PM
Joined: Oct 2012
Posts: 1,172
Toronto, Canada
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gmcraft Offline
Assistant Admin
gmcraft  Offline
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,172
Toronto, Canada
Great that you’ve got good news.


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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