| Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Hi again Laureanne, Even though our operations were much the same I am surprised that you were only in hospital for around 8 days. I was 1 week in Intensive Care and 1 week on the ward and slowly lost all my tubes before I went home. I only had the Nasal tube (NG) for feeding and that was removed around day 10. You have been through major surgery and it will take time to heal. I was also a little frustrated when no one would give me a timeline for when the different parts would come good. I have been on this forum for some time and again and again you will see the advise that everyone is different�it is true! Did they not tell you at the hospital when the trach and peg would be removed? Are you getting any home help? Patience was never my greatest virtue but you will need a lot over the next weeks. Try to rest and relax as this also helps with the healing process. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2010 Posts: 24 Member | OP Member Joined: Sep 2010 Posts: 24 | You didn't say when you had your operation - The Dr. told me upfront that I would be in the hospital 7 - 10 days 2 being in intensive care - Then the rest was critical care for rest. I had the NG tube removed the day before going home - when they replaced it with a Peg tube. Peg will remain till I can eat - I still have not had any liquids or solids! - My speach therapist says she is afraid to try food until swelling goes down - My tongue is still so large and I have trouble getting the liquids to the back of my throat and takes time to swallow it. She wants me to have a Barium swallow test first. I go back to Boston tomorrow - not sure how long they will leave the trach in for! - I am wondering if I will be able to swallow liquids and eat food again ...Will I be able to taste or enjoy food again? -- Want to know how others made out with the free flap surgery - I had a large part in the middle of my tongue removed -- some only have one side of the tongue!!
54 Year Old Female Non Smoker - Non Drinker Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hello Laureanne, Hope your appointment went well today.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | Joined: Sep 2010 Posts: 24 Member | OP Member Joined: Sep 2010 Posts: 24 | I have just returned from Tufts where I had my surgery. My first check-up and got my Path report. Not so good news - first they were almost certain that I had varucous carcenoma - but path report was that it was squamous cell carcinoma ..they took 14 lymph nodes - all were clear! - They took a large part of my tongue ...But the margins were all diagnoised as dysplasia..Not sure what that really means, but they are looking into whether I need to do radiation or just watch me/ Does this means it could turn into cancer? Is my likelyhood that I may have a return? The free flap looks good and they took out some stitches, tongue moves a little better. I was started on some liquid but I cannot really feel it or taste it well. Does anyone know if I will get any feeling in the flap ...I have a few taste buds but taste very little...will that get better. Doctors are not answering my questions - Will I ever enjoy food ever again? Can someone who had a large part of tongue replaced with free-flap tell me? Ohh and the trach was removed Yea! -- Still have peg in stomach!! HELP
Last edited by Laureanne; 09-22-2010 10:21 AM.
54 Year Old Female Non Smoker - Non Drinker Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | If you had surgical margins that still had dysplastic cels in them ( cells that are not malignant but halfway to converting to it) you are a candidate to have radiation to ensure this is completely cleaned up. Taking more tissue surgically will create quality of life issues for you and since it is dysplasia, and not more cancer, radiation is the standard of care.
I'm going to let the others here that have had the flap done answer that part of your question with their direct experiences. I'm from the school of radiation and surgery, no free flap procedure, but did have a PEG for more than a year, if you are having problems with that.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Sep 2010 Posts: 2 Member | Member Joined: Sep 2010 Posts: 2 | My husband Johnny was diagnosed stage 4 squamous cell carcinoma base of the tongue. He had a 9 hour surgery they removed 1/3 of the base of his tongue, 18 nodes 3 were positive. Following surgery he had 30 radiation treatments as well as Erbitux. On 8/23/10 he underwent 18.5 hour surgery to remove the tumor, nodes(0 pos.) and Epiglottis/Tongue reconstruction with free radial forearm flap on 8/23/10. The surgeon sent 18 frozen sections to the pathologist during the surgery. The day before he was sent home we were told the pathologist made an error and one of the margins from the back of his mouth had microscopic cancer cells.How could this happen? Has this happened to anyone else? We see the chemo doc on 9/27/10. What type of chemo will they use? When he is healed another surgery | | | | Joined: Sep 2010 Posts: 24 Member | OP Member Joined: Sep 2010 Posts: 24 | I have started drinking liquids and am doing ok ...but it takes effort to get it back to my throat - over my tongue. I can taste a little on the sides of my tongue and to the back of my throat. It is faint in taste - No one is answering my question about ---Did someone out there have 3/4 or more of tongue replaced with a free flap and if they ever had feeling in their tongue or were they able to taste much ...how was the swallowing of foods etc after a while? Can you tell me what to expect.Everyone seems to avoid this question .....Help
54 Year Old Female Non Smoker - Non Drinker Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Laureanne, if you start a new post then it will get the attention it deserves. This type of question would be best put in the After Treatment catagory. Im sorry but I have had OC 3 times but not on the tongue so I cant give you advice. Im sure someone who has gone thru a partial glossectomy will be able to help you.
Johnnyswife, when starting out, please read the very first catagory titled "New Posters Read this first". It will help you navagate OCF. Please begin a new post so that your topic gets the proper attention and we can welcome you properly. ChristineSCC 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 | | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Hi. My sister had 3/4 of her tongue replaced with a free flap. It took her awhile but she was eating regular food( little peices) and talking really well about 2 months post op. She was also able to taste. She did say her flap didn't feel like her real tongue though but u do get use to it. Everyones recovery is different though. Hope this helps.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Laureanne is now posting on After Treatment Issues. Good tip Christine.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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