| Joined: Mar 2011 Posts: 21 Member | OP Member Joined: Mar 2011 Posts: 21 | had surgery monday. a total glossectomy,bilateral neck disection. only 1 bad node. the tumor was so big that radiation and chemo would not have treated it. at this point my face and neck are very much swelled. i may be stuck with the "tempoary trach" forever. im not real happy about that. on the plus side the drain tubes came out of my neck and leg. i can move around a little better now. maybe if i do more moving around it will help. really gotta get the swelling to go down over the weekend and then maybe the doctor will take out the trach.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Rebel,
I remember those days in the hospital. I had half my face removed due to the size of my tumor(s) and that was after they used radiation and chemo to shrink them. It sucked. I remember how good I felt just to be able to get out of the hospital. I have a video of how I looked shortly afterwards and the size of my face was amazing. I think total it took 9 or 10 months for the swelling to totally go down and my jaw had been wired shut for 4 months.
It does get better, it can be a long road my friend but remember you have these forums to vent to whenever you need. People here to relate to where you are as they've traveled a similar path.
Keep your chin and spirits up my friend, you'll get through this.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | my loving thoughts and prayers are with you both.....praying to Aussie St Mary......xxxxx
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Rebel, thinking of you and sending healing vibes. You're a champion!
d2
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Mar 2011 Posts: 21 Member | OP Member Joined: Mar 2011 Posts: 21 | thanks guys. i look like ive been in combat but i dont feel like a hero. 1 more bag of antibiotic for the swelling and then im done with the ivs. im sure the swelling wont be gone that soon. though i hear i look better then i did a couple days ago. i managed to get some of the blood out of hair. cant wait to jump into the shower.
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: 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 | You are me two months ago my friend. I have been there. Though mine is a hemiglossectomy. You will heal in time and I too hated the trache. Normally they will switch you to a fenestrated trache - hopefully they have, and then after they will remove it completely (I rejoiced let me tell you). I had one node involved as well, and can I suggest that if they offer you chemo and rads take it. Just in case.
Best of luck... it's a long road, but you've travelled a fair bit already. Hugs and healing to you.
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: May 2010 Posts: 36 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2010 Posts: 36 | Continued prayers for you Reb. Hope you continue to heal more and more everyday.
Dave | | | | Joined: Mar 2011 Posts: 21 Member | OP Member Joined: Mar 2011 Posts: 21 | hey guys.they let me out 20/4. minus the trach. woohoo.except for the hole in my throat and the swelling, inability to speak or eat im feeling much better. dont think i could stand another night in the hospital. i havent made the appoint with the ent yet about getting the staples out but i do have one with the MO. monday.im not sure radiation is even an option because that was part of the treatment for the testicular cancer i had back in 91.
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: 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 if it's a different part of he body they can radiate it. Good luck!
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Yes- they can radiate another area of your body. It will probably be reccomended to get any stray submicroscopic cancer cells. Yay! Glad you got out of there! I felt the same way about the hospital. Nothing better than sleeping in your own bed. Wishing you a very successful recovery! Kate
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | 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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