| Joined: Sep 2010 Posts: 21 Member | OP Member Joined: Sep 2010 Posts: 21 | Hey there, my name is Matt. I am new to this site and have a few questions for any survivors who feel they can help me. I was diagnosed with Squamous Cell Carcinoma in Mar. of '10 and had a partial glossectomy with unilateral radical neck dissection with the removal of 60 lymph nodes 1 of which was cancerous in Apr. of '10 and 6 weeks of radiation 5 days a week. I seem to be recovering from the radiation slowly (last rad. dosage Aug 17 '10) my taste is slowly coming back, swelling of right side of face is still very present. My major concern which brings me to my question is when I will be able to have my speech back to the way it was prior to surgery? My fear is that is will not come back. For the most part I have it aside from slurring especially with "th's" for example the word "thirty". I spoke with my doctor who was the one who performed the reconstructive surgery and he said my voice will be back to the way it was 1. because radiation will shrink the added skin and muscle that was placed to my tongue from my leg which in turn will aid in my speech to return it back to the way it was. If this is true....how long after radiation does that take? Secondly, he said there is a surgery which is outpatient where he can take a small area from my leg and add more to the floor of my mouth which will give my tongue more mobility because it is pulling to the right when I try to move it. Also I am unable to stick my tongue out at all due to lack of mobility. I am just concerned that either this surgery was not done correctly to reconstruct or either this happens but it is fixable. Would appreciate some input and really pray that my voice will improve. Thank you in advance!
32 Yrs. Male Diagnosed 3/17/10 SCC right side of tongue stage 2 Surgery 4/20/10 Right hemiglossectomy Right selective neck dissection levels 1-4 Right anterolateral thigh free flap Tracheotomy 31 radiation treatments Nov. PET and CT showed something, hopefully nothing awaiting confirmation
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | hello Matt, As the saying goes, "your millage will vary". We al recover at differest rates! I lost my voive for several months, and it wa "frogy" for 8 months more. Now, after a year it is mostly back but every now and theb I go back to the frog voive. Long recovery, take it a week at a time and hang in there. Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Hi, Matt, I completed my chemo and radiation in August of 2009, and my speech still isn't back to where it was before I was diagnosed. It is particularly sloppy when I am tired or when I first get up in the morning. I think it is the lack of saliva. I especially have problems talking on the phone, it's almost as if I have a lisp. For the most part, however, people can understand me without any problems. I am a library director and I have been able to present progams and to read to children without too many problems as long as a keep my trusty water bottle beside me.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2007 Posts: 83 | Hi, Matt, I had my surgery 10/08 and it took a couple of months for my voice to sound like me most of the time. Like other have said YMMV...just don't push it too hard. When I'm dry or tired the voice still gets flaky...and if turn my head just so....I sound like bugs bunny...try that at your next staff meeting 
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | Joined: Sep 2010 Posts: 21 Member | OP Member Joined: Sep 2010 Posts: 21 | Thank everyone for your input. I will continue to be patient for the return of my voice. Just a bit nervous returning back to work seeing as how my job is 90% speaking with customers. Hopefully by the end of November when I am due back to work, I will at least be speaking a little better. Thank you again!
32 Yrs. Male Diagnosed 3/17/10 SCC right side of tongue stage 2 Surgery 4/20/10 Right hemiglossectomy Right selective neck dissection levels 1-4 Right anterolateral thigh free flap Tracheotomy 31 radiation treatments Nov. PET and CT showed something, hopefully nothing awaiting confirmation
| | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | Hi Matt, For me it has taken quite awhile for my tongue mobility to come back, I have actually had 2 more surgery's trying to gain more. The first one they clip the area that was grown down to the floor/left side of my mouth. Unfortunately that grew back down. This last surgery the essentialy re-clipped and place a skin graf under my tongue. I think it is better, I can touch the roof of my mouth with my tongue now. First time in almost a year. but I still can't stick my tongue out. I have finally realized they took more than 50% of my tongue and I will never speak perfectly again. I mostly struggle with th's and l's that are toward the end of a word or when an l is with certain other contsanants. I am a help desk support person and most of my job is speaking with my customers, but they seem to understand me fairly well and for the most part people understand and are patient with my speech difficulty's.
My loss of speech has been the most difficult part of this for me. But I am beginning to appreciate being alive and being grateful that so far the cancer has not returned. It was hard for me to find information about these particular difficulties, so if you have more questions don't hesitate to ask. It sounds like maybe we can relate a little.
I get sad, becouse I use to love to have long deep meaningful/ and meaningless conversations and now its just to much work to have alot of extra verbal communication. So now I would rather sit and listen to others conversations and not give much input. I still think things I would like to say, but its just not worth the work somethimes.
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | 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 | Maybe I missed it but are you seeing a speech therapist? If not that would be very helpful in getting your old voice back. They can help you do certain exercises which will strengthen your lips and tongue. I went to one for several visits which greatly helped in my recovery.
I also talked for a living. Unfortunately after this last round of OC my speech is not up to my old companies standards. I took a retirment package last July. No matter what path you end up taking in life, enjoy what you do and where you are. Your job is important but it is not your life.
Best of luck with continued healing. 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Matt
I concur with Christine's advice about going to a Speech Therapist. My surgery left my tongue unable to touch the roof of my mouth or even stick out. Most insurance will cover the speech therapy. It involves daily exercises but will make a significant difference in your recovery. My prothodontist also made me a palate drop (like a denture but it artificially lowers the roof of my mouth so my tongue can touch it and make the right sounds). With over a year of speech therapy and now a second custom palate drop, I can speak intelligibly as long as I speak slowly and the listener's native language is English. Still cannot be understood by overseas call centers or help desks so it's a good thing I can repair my computers myself and handle most software problems.(too bad there are not more call centers handled by Wendy who would understand me) A major part of my job was oral advocacy and even my critics would acknowledge me as a "silver tongued devil", so I know how important it is to you to regain speech. My ego made me retire and I miss my prior eloquence but Christine's right about enjoying the life we do in fact live. The good news is that your speech will definitely improve over the next year. charm
Last edited by Charm2017; 09-23-2010 06:45 AM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I had the surgery in Aug 2007 abd I still can't even lick my lips. Noy much tongue except for the tongue muscle. Had a couple of pieces of tongue removed after that sso I just accpet it. Some words are impossible to say so I have to spell some. Glad I spell vbetter than I type. LOL Good luck and I hope it all returns soon.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2010 Posts: 21 Member | OP Member Joined: Sep 2010 Posts: 21 | All of the advice, suggestions and stories that you have all been through are really helping me out. As you all know I am extremely frightened at this point. Not only because of my speech but also because I have yet to have my PET scan (scheduled for mid-October) My doctor assured me that the surgery went well and they removed everything but due to a lymphnode rupturing he advised me to at least do the radiation treatment explaining he was "on the fence" about the chemo. I completed the 31 rad. treatments and it has been just over a month since completion. I have noticed swelling in my right neck most notably along my jaw line, which just last week swelled up pretty big and within a few days went back down (not completely) and is still somewhat hard to the touch. This has me somewhat nervous but at the same time I was told these side effects will may happen as a result of the healing of the tissue from the radiation. If someone could give me some knowledge on that I would definatly appreciate it. As for Speech therapy I have not started any. I was not informed by any of my doctors of doing any either. I have thought it would be a good idea and would definatly be interested in setting it up if it means it will aid in my speech becoming more clear. Again, thank you all and I look forward to hearing more from you!
32 Yrs. Male Diagnosed 3/17/10 SCC right side of tongue stage 2 Surgery 4/20/10 Right hemiglossectomy Right selective neck dissection levels 1-4 Right anterolateral thigh free flap Tracheotomy 31 radiation treatments Nov. PET and CT showed something, hopefully nothing awaiting confirmation
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