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Hi - Just diagnosed #198705
07-14-2019 02:43 PM
07-14-2019 02:43 PM
Joined: Jul 2019
Posts: 3
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Drew Skinner Offline OP
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Drew Skinner  Offline OP
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Joined: Jul 2019
Posts: 3
Hi everyone;

Am a bit scared as I'm sure everyone is (or has been). I've just been diagnosed with floor-of-mouth cancer - carcinoma, moderately differentiated. Am wading my way through various bits and pieces as I find them. I have the risk factors (smoking/drinking) and am cutting that out completely as I want to recover.

I guess the radiation doesn't scare me too much. I'm more worried about the mouth surgery. The hospital just confirmed the biopsy last week and I meet with a radiologist and a surgeon Tuesday Jul 16th in the afternoon. I'm sure there'll be some combination of X-Ray/Cat/MRI scans and then a long road ahead.

Crossing fingers.

Drew.

Re: Hi - Just diagnosed [Re: Drew Skinner] #198706
07-14-2019 03:17 PM
07-14-2019 03:17 PM
Joined: Oct 2012
Posts: 1,104
Toronto, Canada
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gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,104
Toronto, Canada
Welcome to the forum, though i’m Sorry that you have to join our circles of friends.

Oral cancer is a scary diagnosis, well, any form of cancer is scary. Many on this forum have gone through treatment and come out on the other side. I would suggest that you read the information about oral cancer on the main Oral Cancer Foundation website so that you’ll know what your doctors are talking about and what they are proposing for treatment.

After surgery and if you need radiation, it will be a while before you can eat your favorite foods. So, it’s not a bad idea to go and eat as much as you like at this point. Don’t worry about putting on weight because you will lose weight and it’s important that you have the strength and stamina to deal with the treatment.

Please come back and post if you have any questions as you embark on your journey. We are a group of patients and caregivers and we would be happy to share our experience with you.

Wishing your all the best!


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.
Re: Hi - Just diagnosed [Re: Drew Skinner] #198707
07-15-2019 05:07 AM
07-15-2019 05:07 AM
Joined: Jun 2019
Posts: 36
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Dizz_zzey Online
"OCF across the pond"
Dizz_zzey  Online
"OCF across the pond"
Contributing Member (25+ posts)
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Joined: Jun 2019
Posts: 36
Hey Drew,

Welcome to the club. I'm so sorry you're with us but the OCF is a great place to be and is like having a new family who undestand what you're going through.

I've found reading old posts has been helping me to understand more about what's happening in my body and what potentially could happen with my treatment plan. Everyone will have some differences as well as some similarities in their reactions from treatment. Just take your time and ask away.


Female 39 ex-smoker, rarely drinks

Stage 4 Oral Cancer (T4aN1/N2bM0 SCC of the left side of the tongue) Diagnosed on May 20th 2019

Started immunotherapy trial keynote 689 5th July 2019 (2 doses pre-surgery)

Radiologically Inserted Gastrostomy (RIG) fitted 9th Aug 2019

Surgery 13th Aug 2019 sub total glossectomy, neck dissection, radical free flap reconstruction

Home 22nd Aug 2019

Radiotherapy due to start mid-late September 2019
Re: Hi - Just diagnosed [Re: Drew Skinner] #198717
07-18-2019 02:37 AM
07-18-2019 02:37 AM
Joined: Jun 2019
Posts: 23
San Antonio, Texas
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Mokie Offline
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Mokie  Offline
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Joined: Jun 2019
Posts: 23
San Antonio, Texas
Welcome Drew. I too am newly diagnosed and pending tongue surgery on 22 July for a Stage 1 SCC. Of course I won’t be the one to answer any of your questions but will follow you and read as others who are well versed on what you’ll be going through offer their support. Wish you the best outcomes Drew.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: Hi - Just diagnosed [Re: Dizz_zzey] #198740
07-20-2019 11:17 AM
07-20-2019 11:17 AM
Joined: Jul 2019
Posts: 3
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Drew Skinner Offline OP
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Drew Skinner  Offline OP
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Joined: Jul 2019
Posts: 3
Hi;

I read some of your posts. I was originally from England (born Horsham) and am a dual citizen now (UK / Canada). Second opinions are such a huge recommendation here. I'm stage 3-4 based on initial survey. CT's scheduled for Aug 1. PET is to be scheduled. They think I will lose about 1/3 of my lower jaw and about a 3rd or my tongue - plus skin in the floor of my mouth. This means skin transplant(s) from somewhere like my arm and a bone transplant - probably from my leg. I won't know more until they get all of the imaging done. Wishing you the best with the trach. Fingers crossed. For me this just felt like I had an abcessed tooth that needed extraction.

-Drew.
Toronto, Canada.

Re: Hi - Just diagnosed [Re: Mokie] #198741
07-20-2019 11:18 AM
07-20-2019 11:18 AM
Joined: Jul 2019
Posts: 3
D
Drew Skinner Offline OP
Member
Drew Skinner  Offline OP
Member
D

Joined: Jul 2019
Posts: 3
Hi;

Welcome also and am wishing you the best with your surgery on Monday. I'm stage 3-4 based on initial survey. CT's scheduled for Aug 1. PET is to be scheduled. They think I will lose about 1/3 of my lower jaw and about a 3rd or my tongue - plus skin in the floor of my mouth. This means skin transplant(s) from somewhere like my arm and a bone transplant - probably from my leg. I won't know more until they get all of the imaging done. Wishing you the best with the surgery. Fingers crossed. For me this just felt like I had an abcessed tooth that needed extraction. Boy, I was wrong.

-Drew.
Toronto, Canada.

Re: Hi - Just diagnosed [Re: Drew Skinner] #198747
07-22-2019 01:09 PM
07-22-2019 01:09 PM
Joined: Jul 2019
Posts: 3
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Nunny Offline
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Nunny  Offline
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Joined: Jul 2019
Posts: 3
Hey Drew,
welcome to the club no one ever wants to belong to. I want to encourage you that just by being here, you have all of us behind you; not just in this blog, but each of us in our own way, will think of you and send you strength for this journey. It is life-changing for sure....and can be so in many good ways.
I went to my doctor for a bump on my tongue, that felt like a pea husk. She sad, "I don't like it", and sent me, right then, to an ENT. He didn't like it, either, and ordered a biopsy, then and there. I was on my lunch hour! Anyhow, before he did the biopsy, I said, "is it cancer...?" and bless him, he nodded vigorously "YES" while saying we have to wait for the results. So the first time, I had just the partial glossectomy, about 1/3 left side of my tongue, and lymph nodes removed left side of neck. When it came back 4 years later, I was crushed. The 2nd surgery was aggressive: more tongue, floor of mouth left side, 3 molars, and a free flap. So for the flap, where they have to replace some of the tissue in your mouth, they take a chunk of your inner forearm, including the veins, which apparently fit nicely with blood vessels in your mouth. Also I had to have a stomache tube since the mouth was going to be seriously out of commission. So I was def Ms Frankenstein for awhile this time. But I had a lot of loving support from family and friends, and I have a strong faith....well, stronger since all this. So everything healed pretty well, I didn't have to have speech therapy, bc my job required me to talk a lot, and it helped.
When it came back a third time, a few years later......it really took the wind out of my sails. It was time for radiation. I promised to chug Ensure and keep my weight up so I wouldn't have to have a stomache tube again (hated it). So 5 days a week, 7 weeks, I went and they lasered away in my mouth. They make a plastic mesh mold of your head and shoulders, and lock you down to keep you still. I saved mine for the last ten years, as a reminder......anyway. It worked, and I found out how loved I was, by the enormity of the prayer chain that lifted me up.
I'm new here. Just found out about this site. I welcome anyone to ask anything of me. And I feel honored to join you.
Nunny
Virginia

Re: Hi - Just diagnosed [Re: Mokie] #198748
07-22-2019 01:13 PM
07-22-2019 01:13 PM
Joined: Jul 2019
Posts: 3
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Nunny Offline
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Nunny  Offline
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Joined: Jul 2019
Posts: 3
wow, Mokie, I just noticed your surgery was today.....thinking of you

Re: Hi - Just diagnosed [Re: Nunny] #198758
07-24-2019 07:29 PM
07-24-2019 07:29 PM
Joined: Jun 2019
Posts: 23
San Antonio, Texas
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Mokie Offline
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Mokie  Offline
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Joined: Jun 2019
Posts: 23
San Antonio, Texas
I did indeed Nunny. Surgery was a little more extensive than they said it was going to be. Still not sure exactly what all was done, but I guess they’ll let me know on my F/U appointment on August 2nd. When I look in my mouth I can see more was done than just excision around the original biopsy site to achieve clear margins. Now I’m back to another waiting period for the pathology report. So hungry today, but throat sore and can barely swallow shakes. Was given Tramadol for it pain, but started to itch all over. Can’t take NSAIDS as they give me severe gastritis. Nurse told me me to take Benadryl 25mg, stop the Tramadol, and replace it with Tylenol. Hate to be a whimp but this pain is a little more than Tylenol can resolve.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: Hi - Just diagnosed [Re: Mokie] #198759
07-24-2019 09:32 PM
07-24-2019 09:32 PM
Joined: Jun 2013
Posts: 333
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
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Joined: Jun 2013
Posts: 333
alabama
Oh, yeah, call back and ask for something stronger! I'm allergic to NSAIDs too (at least some, and I don't plan on trying any more!), and Tylenol is good but not enough for tongue surgery or anything like that! ((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
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