| Joined: Oct 2021 Posts: 14 Likes: 2 Member | OP Member Joined: Oct 2021 Posts: 14 Likes: 2 | I was just diagnosed with oral squamous cell carcinoma and will be having a mandibulectomy with fibula free flap surgery Nov. 15. What should I expect? Please share your experience. Did it affect your speech, eating, swallowing etc.? What was the pain like? When do you start feeling normal again? Will I ever enjoy food again? What's it like to have your cheek and jaw reconstructed? And how does it look?
Stage IV SCC of left gingiva invading left jawbone, Nov. 15, 2021 mandibulectomy and fibula free flap reconstruction surgery, Seven weeks of chemo and rads.
| | | | Joined: Sep 2007 Posts: 60 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2007 Posts: 60 Likes: 2 | I had my right side jaw done in 2010, it was rough for me. Plan a good 5 months of healing after it and just take each day as it comes. They took the bone out the left leg and the vein and rebuilt the right side. The surgery is around 12 to 14 hours, 7 to 10 days in the hospital, you could be off the feeding tubes in 2 to 3 week. I was on the feeding tube for 4 months as I had a hard time eating again. Plus you will have a trach in for a few days. Just follow the orders and you will do great.
I will be going back through this 13DEC, my 4th round is back and this time it front jaw and part of the left needs to come out.
Round 1 5/2007 - 35 Rad treatments and 6 chemo of cisplatin TPN feeding for 5 months during treatment and after. Tumor was on the right side of the tongue.
Round 2. Tumor on the lower back right jaw area. Surgery on 3/12/2010 to remove the tumor, rebuild the jaw and some work on the back tongue.
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kimmybgood | | | | Joined: Oct 2021 Posts: 14 Likes: 2 Member | OP Member Joined: Oct 2021 Posts: 14 Likes: 2 | Thank you for such a helpful reply. It helps to know realistically what to expect. My surgeon kind of described things in broad terms and made it sound not so bad. Today I saw my nurse navigator who told a very different story about the extent of the surgery. I came away a little gobsmacked but I think the surgeon just underplayed it because his perspective is what HE has to do. What you said is more in line with what the nurse told me. And I am so sorry your cancer is back and you have to go through it all again. I wish for you strength, peace and love.
Stage IV SCC of left gingiva invading left jawbone, Nov. 15, 2021 mandibulectomy and fibula free flap reconstruction surgery, Seven weeks of chemo and rads.
| | | | Joined: Mar 2018 Posts: 12 Likes: 2 Member | Member Joined: Mar 2018 Posts: 12 Likes: 2 | I hope you are recovering well I had that same surgery January 2018. I remained in the hospital for 7 days. I personally had the hardest time with the trach. It lasted two days. The feeding tube was removed before I left the hospital (day 6). I started radiation 6 weeks later. Week 5-6 of radiation was almost harder for me than the surgery. Very difficult to eat or drink anything. Never needed a feeding tube.
My left leg is still a little weaker than before but able to do most physical activity.
Wishing you a speedy recovery.
Maria
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Brian Hill, kimmybgood | | | | Joined: Nov 2022 Posts: 5 Member | Member Joined: Nov 2022 Posts: 5 | Hi Kimmy,
I had my fibula free flap reconstruction surgery in May 2019. I had a 3 cm tumor in my cheek & a .5 under my tongue, so half my tongue was removed. I didn’t have pain in my face at all; my leg hurt & the trachea was terrible because I had formed a blood clot in my brachial branch that was preventing me from getting enough air. For 5 days they told me to “just calm down” until the clot slipped & I couldn’t breathe at all. They scoped it out - but if you’re not getting enough air through your trach - be persistent in telling them!
I was in the hospital 13 days, trach tube removed before I went home, had a g-tube 4 months & had 30 rounds of radiation. The radiation really wasn’t bad. I’d swallow & hold my trachea closed when I knew the laser was coming near my throat. I believe this protected it somewhat from getting raw. I didn’t get any burns.
My swallowing is pretty good. I’d practice while driving to work. I do have a speech impediment because of my tongue, but I can be understood.
My cheek is sunken, but that’s because I had a tumor removed. Your cheek might not be affected. My new jaw works just fine!
I started feeling better after 4 months, and back to normal after 6. I was 65 when I had the surgery. Your recovery may be a lot quicker. DO the physical therapy they teach you. It will help!
Good luck & let us know how you’re doing.
Kathy | | |
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