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#193203 10-13-2016 11:40 AM
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Can those who have had a partial glossectomy give me some feedback on their experience? My husband's SCC is on the right anterior of his tongue. We were told at his consultation that surgery is better to treat SCC when it's on the front portion of the tongue rather than the base of the tongue (which responds better to chemo and radiation). I am concerned about his ability to regain speech functionality. He relies HEAVILY on oral communication due to other medical conditions, including legal blindness and cerebral palsy. What treatment alternatives are out there?


09/23/2016 39 year old husband dx w/SCC BOT, HPV negative, keratinizing, T4A N2B M0.
11/09/2016 Right hemiglossectomy w/neck dissection. 44 lymph nodes removed, 4 malignant. No extra capsular extension, no chemo.
11/15/2016 Received g-tube.
11/23/2016 Dx w/pulmonary embolisms both lungs.
12/27/2016 Started 30 rads (TomoTherapy). No Cetuximab due to PE's.
02/07/2017 Last day of rads.
02/25/2017 G-tube removed.
05/10/2017 1st follow up CT scan clear. Next scan 11/2017.
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I was hoping that someone who had theirs on the base of tongue would answer as their experiences are probably more similar to your husband's situation.

I had a partial glossectomy, but my tumour was on the side of my tongue & off of the floor of the mouth. They performed the radial forearm free flap surgery on me (along with a neck dissection). Then about 5 or 6 weeks after surgery I had 5 weeks of radiation. No chemo in my case.

My speech is somewhat affected. Most people can understand most of what I say, but some words give me problems. Particularly those with the same letter back to back. Occasionally I will try to say a particular word & be unable to pronounce it adequately, so have to pause and come up with a different word with a similar meaning.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
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Im very sorry I missed your post! I havent had the surgery you are describing but Ive read hundreds of posts about it. One thing Ive learned over the years is that every single patient is different. Its next to impossible to compare what 2 patients experience even if they have the exact same diagnosis. Each patient has their own individual immune system and medical history all of which can play a major role in how they react to surgery, rads, chemo, recovery, medications, etc.

The most important thing the doctors need to do is to eliminate the cancer. I completely understand how important it is to be understood and speech impediments can be extremely difficult to live with. I had a good friend who is no longer with us who lived for several years using an ipad with type to talk function (Speak it). She was able to even use the telephone with this app. Theres also texting as another way to easily communicate if speech is affected. My friends voice was taken when her voice box was removed due to recurrent OC.

As far as treatments go, the only ways to eliminate OC for good are thru surgery or radiation with or without chemo. Alone, chemo is only used for palliative care, it will not work on killing the cancer. All these treatments come with their own set of side effects with possible long term and after care issues. Heres a link to the main OCF site, this will help explain everything in more detail.

Best wishes!!!

OCF Main --- Treatments


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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Hi, I'm sorry to hear about your husband's diagnosis. I had almost the same Dx, SCC on the left anterior bottom surface of my tongue in April 2016. I had a partial glossectomy and left arm radial forearm free flap reconstructive surgery, plus lymph nodes removed from the left side of my neck. It was very difficult to speak for a few days after surgery, but for me and most patients I know who have gone through the same or similar surgery, I was able to speak well enough so people could understand me within a month or so. At least, SIRI could understand me!

The surgery makes your tongue swell, and the surgeons also make the reconstructed tongue flap a little larger than it should be just in case you need to have RT, which can cause the tongue tissue to shrink. In my case the RT slightly shrank my tongue flap enough so that I didn't need further surgery to reduce the size (although I'm doubtful if I would have chosen to do that, because 1 tongue surgery was enough for me!).

It's now been about 6 months since my surgery and 3 months post RT, and many people who hear me speaking and don't know about my surgery and RT, tell me that they couldn't tell the difference in my speech. I do have difficulty pronouncing some sounds, but for the most part am understandable. My husband tells me that I have always mumbled, so there is not much noticeable difference, LOL.

Best wishes to your husband in his treatments!


SCC 4/20/16, bottom middle of L side of tongue, T2, HPV-neg
Partial glossectomy 5/9/16, L lymph nodes removed (neg), nerve invasion
30 rad 6/20/16-7/29/16
Non-smoker, non-drinker
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It is so comforting to hear that others have experienced what I am slated for in the next week.I am to have half my tongue removed because of cancer and I donot know the outcome,but upon reading these reports I am encouraged to learn that I will have a good chance to able to still speak reasonably well.This is a re occurring cancer for the 3rd time
Gary K

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Welcome to the forum, Gary. I'm sorry that you are in need of treatment once again. As you have found, many of our members have walked the path before and their experience is of great value to those who come after.

To help us to get you know a little better, could you consider go to "Introduce Yourself' and do an introductory post?


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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