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I had "a nearly total hemiglossectomy", and had a radial forearm free flap reconstruction. My speech is pretty good. I have some speech defects speaking in languages other than English since they require more tongue involvement. English is very forgiving.

I had no peg either. I had NG tube for about 3 weeks (two of them while still in the hospital), and then managed without the tube. Not saying it was easy, but turned out to be manageable for me. I did lose quite a bit of weight though, but I'm pretty sure you'd lose weight even with peg tube. I eat pretty well now, and my only problems are stemming from lack of saliva (things like nuts, for example, are hard to clear out of your mouth if it's dry), but other than that I'm doing well in eating department.

The recovery process was a bit frustrating because I got so much better relatively quickly after surgery only to be knocked down hard by radiation. But now nearly 9 months after the end of treatment I don't have any major issues aside from dry mouth. My forearm is not pretty, but it looks infinitely better than before, and frankly, I don't care.


38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
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I'd go without the free flap -- The fewer cuts to your throat, the better, and you will get used to the modified tongue pretty quickly.

The free flap doesn't do anything except fill the space where the removed part of the tongue used to be. I don't see any improvement to your quality of life with a flap; in fact, my wrist donor site has nerve damage and often gives me some pain.

Yes, the free flap will be anchored to the floor of mouth and cuts have to be made to do the microsurgery to connect the new blood supply to the flap. On my second flap following my total glossectomy, the blood supply died so the flap died. Even with nothing there, I was able to talk, albeit not as well as before. Sadly, all the scarring from all the surgeries and the radiation have slowly closed down my trachea so I am unable to speak at all, despite having my vocal cords, and I am totally dependent on my tracheostomy tube for breathing.

In short, lots more work, more things to go wrong and not much to show for it when finished.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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[quote=Susan2992]I meet with the reconstruction doctor on Tuesday, and he described the reconstruction aspect of the surgery and answered all my questions.

He has me almost convinced that the free flap is a good thing for me, but still not 100% convinced. They would use my forearm for the donor site. Traditionally they then cover the donor site with a graft from the thigh, so you have 3 areas that have to heal. [/quote]

Hi Susan,
I had the free flap as you describe in September 2006. Am happy to add more but was wondering if a descion has been made since you last posted on this thread?

Pete..It is good to see you post again


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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I went for a 3rd opinion at Johns Hopkins in Baltimore, MD, and got a totally different recommendation - one that I'm more comfortable with.

He first wants to do another PET scan first before any surgery to make a better determination on whether or not a neck dissection is needed. He felt like I did that a PET scan done 2 weeks after surgery can very likely be showing a false positive. And the FNA I had showed no evidence of cancer. So he wants a little more reason to justify a neck dissection before actually doing it. I need to wait until mid-March for the PET scan.

He said that my tongue is healing nicely (biopsy/surgery was on 1/6) and currently shows no visible evidence of cancer. However, he does recommend surgery, but not sure how much of the tongue he would need to take. He wants to do frozen sections during surgery and may only need to excise a small area or may need to take half as was recommended by the other doctors. So going into surgery I won't know how much of my tongue I'll have when I wake up.

Reconstruction may or may not be needed depending on how much of my tongue needs to be removed. Depending on how much is removed, he may just do a graft or if a lot is removed, then a free flap. Again, I will have a big surprise when I wake up.

So right now I'm on hold until the PET scan, and then a surgery date and plan will be set (sometime before end the of March). The one decision still up in the air is whether or not a neck dissection is need, and if needed, should it be one or both sides.

Pete, you echo my original surgeons opinions exactly as he doesn't feel I'll need the free flap (nor as extensive a surgery as opinion #2).

Thanks to everyone for your input. It seems that the free flap works fine for some, and others have problems. At this point I'm hoping I won't need one. The recovery time is a lot less without it.


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; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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I agree with the first and third assessments; keep your eye on the cancer ball and then apply the KISS principle. One problem with the flap is that they may need to remove more of tongue than otherwise. Also, a neck dissection may be required to hook up the blood supply for the flap. All best avoided if not needed.

Pete


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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I had the free flap 3 years ago to reconstruct about 1/3 of my tongue, and except for the scar on my wrist, no one notices anything; speech is normal, eating, swallowing normal. (Even the neck dissection scar "just looks like another wrinkle" my 10 year old granddaughter told me last year)

I was at UCLA, was in surgery about 9 hours, had a trach and a nasal tube for the week I was in the hospital; was talking and eating before I left, and both were removed before I left. Took pain med for about two days after, and was able to eat almost normally very soon after. Very unremarkable recovery - skin graft on thigh was slowest to heal, and probably the most uncomfortable.

I had weekly massages for a year after the surgery and still get every other week. I think the attention to the dissection area helped with the lymph swelling and scar tissue; My neck gets tired and is achy sometimes, but not much worse than before surgery. I find a spot once in a while that doesn't have full feeling, but everything is pretty much back to normal.

I know I'm very blessed to have had such an easy recovery. I was surrounded by family and friends and covered in prayer. I'm very thankful that there is even such a thing as tongue reconstruction!

All that said, I wouldn't look forward to having it done again! My kids tell me the first few days were worse than I remember - said I was a little goofy on my pain meds! I started talking as soon as I woke up - just wasn't very easy to understand for a few days.

Good luck with whatever treatment you decide on.


10/2006 SCC of tongue, 2cm+ (T2)No node involvement or metastases; Resection approx. 1/3 of tongue, free flap reconstruction and MRND (lymph nodes removed) on 10-11. No cancer in lymph nodes - No further treatment recommended at this time. 3.5 years cancer free.
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I am not sure how or where to ask my question so I am going to give it a try here. I was diagnosed with Mucoepidermoid Carcinoma Low grade in December 2008. I just celebrated my one year anniversary from surgery on March 26, 2010. I had a fibular free flap done and have suffered severe pain in my leg since. Has anyone else experienced this at all? I am still on pain medication daily and cannot even walk far distances because of it! Help guide me in the right direction please!


Mucoepidermoid Carcinoma of the mandible, fibular flap surgery 3/2009 no chemo or radiation
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Terri,

Start a new topic in the Introduce Yourself Forum, otherwise you will probably not be found here byt those that can help you.


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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I had the repeat PET scan on 3/16 - the 'active' lymph nodes from the PET scan in January have quieted down, so neither my local doctor nor the doctor at Johns Hopkins feel a neck dissection is warranted at this time yippie! They definitely recommend careful monitoring of the lymph nodes in my neck via PET scan and physical exams to ensure nothing develops in the future, but for now they will leave my neck alone.

My surgery at Johns Hopkins is scheduled for 4/6. He will be doing frozen sections during surgery to ensure that all suspect tissue is removed, but he feels the surgery on my tongue will be minimal. He does not anticipate that I would need reconstruction, so no free flap (a big sigh of relief!). Although he said there is a small possibility I made need a graft (using my thigh as the donor site). The surgery will be 2 to 3 hours, and I would stay overnight.

This is a far cry from the surgery that was recommended at Fox Chase! The surgery they recommended would have taken 8-12 hours, 24 to 36 hours in ICU, 7 to 10 in the hospital, and 8 weeks recovery time. Plus I would need speech and swallow therapy and physical therapy afterwards. Not to mention the LT consequences and QOL issues caused by the surgery.

It sure seems like I got off lucky!

Thank you to all who responded with their experiences with a free flap.

Last edited by Webmaster; 10-23-2013 09:58 AM.

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; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jan 2004
Posts: 1,116
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Alleluia! Susan I am so happy to read your post.....doesn't sound real bad, I am not making light of it, just happy you won't have to have a flap , etc......And overnight, is even more awesome!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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