| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Hang in there. Radiation after surgery is very common because it does a "mop-up". A lot will depend on your pathology report post surgery on the tumor they took out. You will want to know if there is any evidence of perineural invasion, or if the tumor was HPV positive and sometimes the doctors don't say at first. I just asked for and got a copy of the pathology report so I could read it myself I can't imagine any issue with radiation to your throat after radiation to your testicles. Heck I had radiation again on the exact same throat area even after the "maximum" It's awful at first after the surgery but it does get better. Keep the faith Charm 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: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | a total glossectomy,? I have not ever heard of that before...not saying it's never been done, but I just haven't heard of that. What are they going to try to do something to maybe allow you to eat or talk again? I am glad you are out and on ur journey at home! I hope things get easier for you in the near future!
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I believe there are a few people here who've had total glossectomies, related to the location of the tumor or size. They do rebuild it - and I think eventually there is reasoable function, but I am sure they will pop into explain.
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: Mar 2011 Posts: 21 Member | OP Member Joined: Mar 2011 Posts: 21 | i hope they pop in to explain. im not having much luck with speech and none swallowing. which is a problem. im not gaining weight on ensure. and i still have radiation and chemo to look forward to.
48 yo male smoker beer drinker biop dx 2/15/11 stg iv scc tongue teeth out 2/16/11 peg 2/21/11 pet 2/22/11 total glossectomy 4/11/11 18 nodes removed. 1 cancerous margins clear
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | IMO Ensure (250 calories a can) will not cut it. Try Ensure Plus (350 calories a can) or VHC (560 calories a can)by Carnation. After my surgery, they gave me a prescription for Jevity 1.5 (355 calories a can)so insurance would cover it. However Jevity can only be tolerated with a feeding tube since it's so bad, it makes the chalky VHC taste like the nectar of the gods. It's terrible when you can not speak or swallow. hang in there. Charm
Last edited by Charm2017; 04-29-2011 04:45 PM. 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 | Congrats and nothing but the best your way. I think we all have had the same thoughts as you concerning the what ifs. You seem to have a great outlook and the gumption to Go Man Go. To me the best part after getting out of the Hospital those times was standing in the shower the 1st time. LOL, even if it was like washing a strangers body.
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: Mar 2011 Posts: 21 Member | OP Member Joined: Mar 2011 Posts: 21 | my mistake. im using ensure plus but its not doing it. i need info on how to make swallowing work.
48 yo male smoker beer drinker biop dx 2/15/11 stg iv scc tongue teeth out 2/16/11 peg 2/21/11 pet 2/22/11 total glossectomy 4/11/11 18 nodes removed. 1 cancerous margins clear
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | The best way to make "swallowing work" is by working with a Speech Language Pathologist (SLP). Despite their "title", they are also trained in swallowing exercises like these swallowing exercises There is an excellent diagnostic test to identify the nature and seriousness of your swallowing disorder : MBS While your doctor has to order a Modified Barium Swallow (MBS)test, it's the SLP who usually administers it in conjunction with a radiology tech. There is also VitalStim, an electrical "shock" treatment that has helped some posters. My insurance covered all of the above for two years, then everyone said that with no improvement after two years, it was unlikely to work for me. I want to stress that this is NOT the usual outcome. Get an SLP appoinment as soon as you can - the doctor just writes dysphagia treatment/swallowing therapy on a prescription pad so insurance covers it. Charm 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: Mar 2011 Posts: 21 Member | OP Member Joined: Mar 2011 Posts: 21 | i saw a slp yesterday. had a mbs thursday. the liquid would get down to where it was supposed to but i could not open the passage to the esophagus for it to go down. it just sat there. although i was trying it wouldnt work. im scheduled to see the slp twice a week. she has never worked with anyone with my problem
48 yo male smoker beer drinker biop dx 2/15/11 stg iv scc tongue teeth out 2/16/11 peg 2/21/11 pet 2/22/11 total glossectomy 4/11/11 18 nodes removed. 1 cancerous margins clear
| | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2010 Posts: 167 | If your SLP has never worked with someone with your problem then you need her to refer you to an SLP who does have the experience! I cannot urge you enough to see a SLP with a lot of experience - it can make the difference between eating again and never eating again. What you describe is actually quite common - the upper espohagal sphincter sounds like it isn't opening to allow food and fluid to enter the esophagus - was there a referral to a GI MD made? They usually like to take a look at those things and assess for the need to dialate or stretch that sphincter.
Your surgery wasn't too long ago - it could all be related to residual swelling too. Swallowing is a complex process that we take for granted until we can't do it! Keep up the effort!!
Jennifer (39) 02/10 SCCa Tongue & Base, HPV- 03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out Back at work and feeling good 03/24/11! 12/20/11 - 9 month f/u PET/CT - all clear!
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