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Just need to talk #197438
10-19-2018 04:00 PM
10-19-2018 04:00 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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Hello, a few weeks back I posted about an upcoming incisional biopsy for leukoplakia on the bottom of my tongue. The surgery is less than two weeks away and I am a mess. I don't know if paranoia has set in or what is happening but I feel like I have neck pain, jaw pain, ear pain, tingling on my tongue, you name it, I am feeling it, or thinking I am feeling it. I know that I just have to wait and see what happens, but I also know that bottom of tongue leukoplakia is the most likely to turn into oral cancer. I don't feel like I can talk to anyone. My husband says we need to wait it out and not to panic, and I just don't feel like I can express my fear to anyone else right now. My 10-year-old is sensing my stress and anxiety and it is making her anxious. I don't do well with waiting. To make it all worse, I am a teacher and I have to face explaining this to my 168 students next week. I know I don't have to tell them everything, but I also need to make them aware that my talking might be harder and strange when I come back. I don't know what I am looking for other than someone to talk to and to just know there are people out there who understand because I am terrified.
Thanks for listening,
Sara


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] #197439
10-19-2018 04:16 PM
10-19-2018 04:16 PM
Joined: Sep 2018
Posts: 71
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VirgoMomof3Boys Offline
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VirgoMomof3Boys  Offline
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Joined: Sep 2018
Posts: 71
Hi Sarah!

I won't tell you to try not to worry because I know firsthand that it doesn't work that way! How far out is your biopsy scheduled for? Do you just have the white patch or are you feeling any lumps or bumps?

I had a punch biopsy done on two sections of the underside of my tongue and I went to work the next day. After the numbing wore off I did need Tylenol and I wasn't comfortable eating until about 3 hours later, even though the ENT said I'd be fine to eat an hour after the procedure. My tongue healed really fast after the biopsy. I'd say a couple days later I was for sure back to normal. I'd say maybe take the day off after the procedure if you want to be on the safe side. As far as telling the kids, I'd wait at this point.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Just need to talk [Re: VirgoMomof3Boys] #197440
10-19-2018 04:29 PM
10-19-2018 04:29 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
Hi Virgo,
Thanks for responding. I have had a punch biopsy a couple of years ago when they first found the patch. This time, they are doing an outpatient surgery, putting me under, and removing the entire patch and closing the tongue around it. So the doctor recommended I take 2 weeks off. I have to let kids know something even if I am not talking cancer or what might be with them yet. One part of the white patch is thicker and harder, but there isn't any pain. Just it is there and I can sometimes feel it rub against my teeth. I think some of the "pain" I am feeling is psychosomatic and possible because I rub and prod my neck and jawline a lot. The surgery is with an ENT surgeon and I think part of my anxiety is that he recommended we take it off when I first had the biopsy done as a precautionary and I put it off. Now they are worried because it had a red flare up a month or so ago (which is now gone) and want it off sooner rather than later. I couldn't get in until the 31st (Halloween, what was I thinking) because of the surgeon's schedule. It is the waiting and feeling so dang alone that is messing with me. Every one has been supportive but they also don't get it. Thanks for listening.
Sara


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] #197443
10-19-2018 04:45 PM
10-19-2018 04:45 PM
Joined: Sep 2018
Posts: 71
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VirgoMomof3Boys Offline
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VirgoMomof3Boys  Offline
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Joined: Sep 2018
Posts: 71
Oh I see! I'm sorry, I read 'biopsy' thinking they were just going to go for a sample but this is them wanting to take the whole section.

I completely understand your anxiety! Surgery is not fun and waiting for it is maybe worse! Did the ENT say for sure that your speech would be impaired from this? It sounds like if he's just going to be able to stitch it up that after 2 weeks of healing, your speech may not even be affected. I say this because I've lost a fourth of my tongue and people tell me they can't tell a difference in my speech, just that I speak softer which may be from my vocal cords still healing from being intubated. I do have to work harder to enunciate, but I am getting used to my new tongue so maybe in time it will become easier.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Just need to talk [Re: VirgoMomof3Boys] #197446
10-19-2018 04:59 PM
10-19-2018 04:59 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
He has been very elusive about how I will talk. And what the pain will be like. I keep hearing, "it's different for everyone," which I get, of course, but sometimes you just want an answer, you know? I am nervous about the surgery but overall, more nervous about the results. I have found a lot of solace reading the forum boards and learning. I am a lifelong learner and not knowing what I am up against is more nerve wracking than anything else. It is good to hear that even with partial tongue loss you are talking nearly normally. Thanks again for listening and responding. It means a lot and I feel calmer for now.
Sara


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] #197449
10-20-2018 09:10 AM
10-20-2018 09:10 AM
Joined: Feb 2015
Posts: 73
Boston suburb
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tlc356 Offline
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tlc356  Offline
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Joined: Feb 2015
Posts: 73
Boston suburb
Sara: I was warned about potential speaking issues too. After surgery things quickly got back into shape and over the years the only thing that's changed is I can't whistle the same way I did before.

My advice is to be sure you have the best doctor and the best cancer center and don't fret about the future. They will give you the best possible outcome.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: Just need to talk [Re: Sara G] #197450
10-20-2018 10:10 AM
10-20-2018 10:10 AM
Joined: Jan 2006
Posts: 752
Pennsylvania
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Susan2992 Offline
"Above & Beyond" Member (500+ posts)
Susan2992  Offline
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Joined: Jan 2006
Posts: 752
Pennsylvania
Sara,

I’ve had 4 surgeries on my tongue - lateral side (same area). With my first surgery I had no idea what to expect and my doctor didn’t tell me too much. I was in a lot of pain for a few days and my tongue was very swollen and it was nearly impossible to talk and swallow. When I was leaving the hospital, he gave me a prescription for pain pills. I asked him to change it to a liquid. I found eating something frozen (ex. Italian ice) helped with the swelling and pain.

My speech is good, but as you’ve been told everyone is different - depends on what area of tongue/mouth and how much is removed. It was recommended to me to “exercise” my tongue as soon as practical after surgery - ask your doctor as far as timing and what to do.

Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2017
Re: Just need to talk [Re: Sara G] #197451
10-20-2018 10:14 AM
10-20-2018 10:14 AM
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
Susan,
Thank you for your reply. I am encouraged by all of those who have had surgery and still are able to talk. Time will tell what my results will be, but I am trying hard to stay optimistic. I will mention the liquid pain medication when I go in for my surgery. I will also make sure to bring up exercises with the surgeon during follow up. Thank you for taking a moment to reach out, I will keep this thread updated with questions/results.

Thanks,
Sara


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: tlc356] #197452
10-20-2018 10:15 AM
10-20-2018 10:15 AM
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
Thank you, TLC356. I am in awe of all the support on this board. I really appreciate your perspective.


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] #197453
10-20-2018 03:02 PM
10-20-2018 03:02 PM
Joined: Apr 2018
Posts: 48
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DeniseG Offline
Contributing Member (25+ posts)
DeniseG  Offline
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Joined: Apr 2018
Posts: 48
I had similar surgery after a cancer diagnosis. I had the leukoplakia on my right lateral tongue for 3 years before it developed a sore that was cancer. I understand how you feel! I took a Xanax before going into the hospital for surgery so I was pretty calm. I'm glad you are getting rid of it now and hopefully there is no cancer. Have you had a PET scan? Having this helped relieve some of my anxiety as it was normal, meaning nothing had spread. As for after the surgery, you will have dissolving sutures and a lot of swelling, I think I told you before about the text to speech app for your phone that will help you communicate for a while. You can talk afterward but with a swollen tongue and the pain, the app may help. A week after my surgery I saw my primary doctor and he said my speech was fine and he could tell no difference. I think that with two weeks off to heal you should be fine back at school. Your tongue may get sore from talking but otherwise you should be fine. Or you could take 3 weeks and come back after Thanksgiving. I had my surgery in February and there is no difference in my speech, I did not need therapy. Good luck, we are here to cheer you on!


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
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