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Floor of mouth cancer #197621
11-19-2018 03:05 PM
11-19-2018 03:05 PM
Joined: Sep 2018
Posts: 9
Mike young Offline OP
Mike young  Offline OP

Joined: Sep 2018
Posts: 9
First off thank you for haveing this website. It has helped me through a very terrifying time.
October 30 I had my surgery it was about 12 hours long. As soon as they finished and took me off ventalater i was awake and aware of my surroundings
My surgeon did an amazing job. Other than alot of swelling i looked just as i did before surgery. My family was amazed.
He removed most of my lower jaw and replaced it with tibia bone from lower leg. Its called a free flap
Also had to remove about 40% of the front of my tounge. I have pictures of me right after surgery and i really did look just the same. He also had to put in a treach tube. The incision was almost ear to ear but way under my chin. He took a skin graph from my upper leg to repare alot of my tongue and use as the flap i beleive. I had 4 drain bulbs on neck and upper skin graph area was vacuum sealed. Lower leg stapled back together.
Its amazing what they cam do with us
Fisrt week neck bulbs were removed. White cell count went up and was put on antibiotics. Unable to talk or drink. I spoke with pen and paper. Every hour nurses checked on me and the 2 flaps he created
In the second week the nerve on the right side failed so I will forever have limited feeling on that side. Left side took very good
Second week i was moved out of icu to another room
White cells came down and they were able to remove feeding tube in nose. Very incomfortable place for that. They installed a peg tube in my stomach for constant feeding. Speace therapist gave me passie muir speaking plug for treach tube and heard my voice for first time. Was very exciting for me. Started giving me ice chips also exciting. Nothing in mouth for week and a half. The wetness felt so good. Then on to frozen smoothie. I could tast for the first time
I cried like a baby. So good to taste and smell again
Wasnt sure i would be able to. Every day therapy for speech. Almost 3 weeks in hospital people understand my speech thin liquid diet on rehabilitation floor. Walking every day with and without walker. Swelling way down. Looking to be released either day before or aftet thanksgiving
Treach tube down to smallest size. Maybe out next few days. Still have boot to protect leg. Will be starting chemo and radiation in about two weeks
He remobed about 70 lymph nodes. Only 3 tested positive. Found microscopic trace of cancer in chin area he said should be gone with chemotherapy
He said it was one of the largest tumors he has removed. I have had so many happy days and a few sad days but i am alive and i have a second chance at life. I know this is a long post but anybody whos going through this trust your team your family and friends and you will get through this even when you feel lost they will pull you through this. Im not out of the woods yet but i do see the road ahead of me
Thanks everybody

Mike young
Re: Floor of mouth cancer [Re: Mike young] #197622
11-19-2018 09:07 PM
11-19-2018 09:07 PM
Joined: Jun 2013
Posts: 345
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 345
Way to go on your recovery! Sounds like you're making great progress! Happy Thanksgiving!

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
Re: Floor of mouth cancer [Re: Mike young] #197623
11-19-2018 10:01 PM
11-19-2018 10:01 PM
Joined: Apr 2018
Posts: 51
DeniseG Offline
Supporting Member (50+ posts)
DeniseG  Offline
Supporting Member (50+ posts)

Joined: Apr 2018
Posts: 51
Way to go Mike! Best of luck with your continued treatment!

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
Re: Floor of mouth cancer [Re: DeniseG] #198126
04-13-2019 05:47 PM
04-13-2019 05:47 PM
Joined: Mar 2019
Posts: 77
Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)

Joined: Mar 2019
Posts: 77
Dear Mike,

Please keep me ( and us) informed on your progress.
Our stories are similar... I am almost 2 years out now -- but I am 100% dependent on my G tube, and have 0 ability to swallow solid food.
And they are being generous allowing me liquid diet, because I do aspirate into my trachea and lungs.
Tonight, I have my 5th Pneumonia, since my cancer diagnosis.
Thursday I had double surgery in the Main OR, and my 2 Head & neck surgeons operated on 2 different sites. Awaiting 3 new biopsy reports.

That's the cool thing about the site here-- we can talk with others who have walked in our shoes. I vividly remember all the milestones you talk about, and the ones that just won't ever happen, too.
We just have to create our New Normal.

Take very good care,


4/2017- Stage III SqCC- Tongue
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

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