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Joined: Dec 2018
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Hi. This is my first post. I've been reading various posts/threads for encouragement, guidance, and general answers to questions.

One question I have is when will the swelling on the front of my tongue go down which looks like a small light bulb. Going on almost 7 months post surgery of partial glossectomy at the end of Aug 2018. After completing 34 radiation treatments mid Nov, facial hair growing back, saliva and taste slowing coming back. There have been several times where I've bit the tip of tongue making a gash. Learning to chew slowly.

I know everyone is different but does the part of the tongue that was reconstructed ever go back looking like the rest of the tongue or is this large bulb what I have to get accustom to?

Thanks,

Justin.


Dad of 3 kids, Age 48, scc-stage 2, partial glossectomy, neck dissection 30 nodes removed – clear margins Aug 2018, completed 34 RAD Nov 2018.
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Hi Justin! Welcome to OCF!

All patients are different and will experience things in their own, unique way. That includes how they are with medications, treatments, recovery, surgeries etc... I'll try to help with info Ive learned over the past 12 years of being part of OCF. Being 7 months post surgery and still have such a large bump on your tongue, I would suggest first going back to your doc to get rechecked to make sure everything is ok. Once you find out that everything is going as expected then ask about getting another surgery for reconstruction. Since you have a few months to wait until you can do the reconstructive surgery, theres no major rush to get moving on this immediately. Plus you still are in the recovery phase from trying to bounce back from rads which can take 2 years for a complete recovery. By waiting a few months it gives you more time to recover. My docs
all made me wait until I was at least one year after the surgery before they would do any reconstruction. Many patients find a second surgery is necessary to trim down the area that was operated on. I was told by my doc that once you hit the one year mark the patient is as good as they will be and the swelling should have receded. Usually reconstructive surgeries are much smaller and simpler than the original operation. Its usually a quick surgery done on an outpatient basis. Sometimes a second reconstructive surgery is needed so dont be surprised if you need another surgery down the road.

Best wishes with your continued recovery!


Christine
SCC 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 smile
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My surgery was Apr 10/18, and I had a big hump down my tongue on the side of the partial glossectomy (~ 25% of my tongue). It had improved somewhat but at the end of November my doctors were telling me that might be as good as it would get, perhaps just marginally better. Then I noticed about a month ago that it’s improved dramatically, my tongue looks almost normal! So that would be 10 mos post surgery for me, although I know everyone is different. And I still have significant numbness issues on my neck, and some things I can eat pretty good but very much some ongoing eating challenges too. Again, everybody is different, this I have learned.

I hope all goes well for you.


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
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Thank you both so much for sharing your timeframe. It really helps hearing from others who went through this so I can frame my own healing progress. My doctor's appointments have been pushed back several times. The only comment I got from the doctor shortly after the surgery is that it looks good which is a little vague.

I did not know there was an option for another reconstructive surgery. I'll remember that if large bulb doesn't improve after some more healing time. Biting my tongues several times hasn't helped.


Dad of 3 kids, Age 48, scc-stage 2, partial glossectomy, neck dissection 30 nodes removed – clear margins Aug 2018, completed 34 RAD Nov 2018.

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