| Joined: Aug 2013 Posts: 21 Member | OP Member Joined: Aug 2013 Posts: 21 | So I'm about 9 months out from my 60% glossectomy, and am still looking at the flap the doc put in as being about twice as big as what from my perspective it needs to be. I know recovery is at least a year for this surgery, but the flap really hasn't shrunk much at all in the last few months and I don't see it shrinking by 50% in the next few months either. Right now it just looks like an elephant that my remaining tongue is dragging around on it's back - I don't see why the combined old tongue/flap can't have a cross-section that is a little closer to a single healthy tongue.
If the flap were smaller, I'm certain I'd have at least a fighting chance of learning how to eat semi-solid food again, but with the size of it being what it is, eating is just not possible, I can't get the food around/over the flap. It also affects my speech of course; I don't expect to sound how I did before surgery, but at least I wouldn't sound so much like I have 8 cotton balls in my mouth.
So, has anyone had flap material removed? Was it difficult? Are there risks, like could it (removal) make things worse? Did things improve once healed? Is it too early to ask my doc?
Thanks.
Joe SCC BOT T3N0 Aged 36 (1999) Unknown HPV status (before they knew) SWOG Protocol - 2 rounds chemo, 6 weeks radiation Recurrence Age 50 (2013) - same site SCCa BOT T2N0M0 HPV negative 60% Glossectomy/Free Flap from Latissimus Dorsi Recon, Neck Dissection + 6wks Rad Tx Non-tobacco user
| | | | 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 | Joe, its fairly common for the flap to be larger than is needed. Its much easier to take a little bit off than to try to add some on. Dont be surprised if the doc waits a full year until he agrees to do any resectioning. It can take the body a full year to adjust from this type of surgery. Swelling can continue to subside gradually thru out the first year.
Surgery to remove some of the flap is much easier than what you originally had done. Not to diminish they risks of surgery (just like any other surgery, it has risks) but it really is a piece of cake. Its a short surgery and you should heal quickly. 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: Aug 2013 Posts: 21 Member | OP Member Joined: Aug 2013 Posts: 21 | Thanks Christine, I like the sound of 'piece of cake' on many levels 
Joe SCC BOT T3N0 Aged 36 (1999) Unknown HPV status (before they knew) SWOG Protocol - 2 rounds chemo, 6 weeks radiation Recurrence Age 50 (2013) - same site SCCa BOT T2N0M0 HPV negative 60% Glossectomy/Free Flap from Latissimus Dorsi Recon, Neck Dissection + 6wks Rad Tx Non-tobacco user
| | | | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | "OCF across the pond" Supporting Member (50+ posts) Joined: Jun 2014 Posts: 56 | My flap seems too big too. It gets bitten all the time. It's too wide.
Mar 99 white patch tongue Dec 11 white patch changed shape. biopsy neg Sep 13 white patch ulcerated. Biopsy Nov 13 diag Tongue SCC T2N2BM0 poorly Differ. Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft Feb 14 PEG tube Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi.. sorry I didn't comment earlier - it's been a crazy few weeks for me. IT WILL SHRINK. Mine too was WAY TOO BIG. My surgeon ( a terrific dr. BTW) said don't worry we can debulk it. WELL - not unusual but I was less than enthusiastic at the thought of allowing him in my mouth with a scalpel (unnecessarily) When I went to visit my plastic surgeon for my last visit way back (2 years ago) I repeated what my Surgeon/ENT said. He said NO!!! radiation shrinks tissue - leave it. He was quite right. three years out it is fine. I do film work and have always been quite concerned about a lisp.. over the last few years it has shrunk. I was recording a bunch of lines for a voice over audition a few days ago and listening back I had NO slurring and no lisp. It just takes a while. Mind you this is very much dependent on how good your surgeons are. I had a third to half of my tongue removed. So it takes time. Things like temperature, and lymphedema can affect it. Once you get a clear scan, you can start with lymphatic massage. This will help with your shoulder and neck and tongue. Hugs. It will improve.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | "OCF across the pond" Supporting Member (50+ posts) Joined: Jun 2014 Posts: 56 |
Mar 99 white patch tongue Dec 11 white patch changed shape. biopsy neg Sep 13 white patch ulcerated. Biopsy Nov 13 diag Tongue SCC T2N2BM0 poorly Differ. Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft Feb 14 PEG tube Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | Joined: Aug 2013 Posts: 21 Member | OP Member Joined: Aug 2013 Posts: 21 | First, from the little I've seen of your commitment to this site I don't think you owe anyone any apologies or explanations for anything...
Second, thanks for the perspective of a few years out - I have an appt with my ENT surgeon in July and have been pumping myself up to demand some of the bulk be removed, but your info will help me have more patience. I haven't experienced really any shrinking over the past several months and had gotten to the point where I was convinced there's no more coming, but maybe I really do have to wait years. My speech is definitely affected by the bulk; I still have the tip of my tongue, and when I try to say any word with an 'L' in it the bulk keeps my tip from touching the roof of my mouth - it (the bulk) hits the roof first (it actually presses against the roof when it's in 'rest' position). So it bothers me, but it sounds like I need to just be patient. And to have a little perspective....
Joe SCC BOT T3N0 Aged 36 (1999) Unknown HPV status (before they knew) SWOG Protocol - 2 rounds chemo, 6 weeks radiation Recurrence Age 50 (2013) - same site SCCa BOT T2N0M0 HPV negative 60% Glossectomy/Free Flap from Latissimus Dorsi Recon, Neck Dissection + 6wks Rad Tx Non-tobacco user
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