| | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) |  "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hey Cheryl,
Kris has had a total Glossectomy. Some 2 years ago now. He tastes and talks.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Yep... Not that I would ever want it to happen, but a glossectomy - if it renders you cancer free - is worth it, and while it may effect quality of life in the short term, I think it is very overcomeable (is that even a word?) and frankly the body has a way of making up for the loss of something like that - for the most part. hugs
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: Jan 2014 Posts: 17 Member | | OP Member
Joined: Jan 2014 Posts: 17 | Hey everyone. I had a CT scan.but it didn't show us anything. I'm scheduled for a PET tomorrow. If I have any disease left, I will have chemo and radiation therapy, plus I'll be recommended for the PEG. If they don't see anything then I'll have 6.5 weeks of radiation only. I'm anxious to start treatment.
Non-smoker, non-drinker
10.28.13 Biopsy R front tongue
10.30.13 Stage 2 SCC dx HPV Neg, age 27
11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin
1.17.14 SO confirmed SCC recurrence
1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins
1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor
2.5.14 Clear CT
2.17.14 Clear PET
3.10.14 Start IMRT
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | So, it looks like maybe some things are beginning to go your way. No more surgery would be great, one more hurdle crossed with one or two more to go. We call that progress and some days any form of progress is the best thing for our sanity.
Since my last post of a week or two ago I see your spirit remains strong. That is an incredible asset to have during this journey, it just makes everything more tolerable, no matter how uncomfortable it is.
I know upcoming radiation scares you, but you don't know it will be bad. I too thought it would be horrible. But, once I got into it I found it wasn't bad at all. Food tasting horrible and some mouth pain (little to no throat pain) were about as bad as it every got for me. You might be one of the lucky also, so you just have to wait and see what comes. No matter how bad it is, your great attitude will make it easier.
Keep fighting and keep writing, you are an inspiration to many.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Jan 2014 Posts: 17 Member | | OP Member
Joined: Jan 2014 Posts: 17 | Hi friends. I had a clear PET scan last week!!! I was very excited to find that the new place is not a tumor. I start radiation on Thursday the 27th. They did not suggest chemo, but I have requested to see a medical oncologist and have that appointment Wednesday. I will take his opinion. He is Dr Frank Greco, one of the top medical oncologist in the world. If he says he doesn't think it's necessary then we will forego. If he suggests chemo then I will go ahead and have the PEG placed per doctor's orders. I'm nervous, but not in a bad way. Ready to get treatment started and get it over with.
Last edited by Katy G; 02-23-2014 05:19 PM.
Non-smoker, non-drinker
10.28.13 Biopsy R front tongue
10.30.13 Stage 2 SCC dx HPV Neg, age 27
11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin
1.17.14 SO confirmed SCC recurrence
1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins
1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor
2.5.14 Clear CT
2.17.14 Clear PET
3.10.14 Start IMRT
| | | | | 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 | Awesome on the scan!! 
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: Jan 2014 Posts: 17 Member | | OP Member
Joined: Jan 2014 Posts: 17 | Thank you, Cheryl.
I also spoke with my medical oncologist and chemotherapy will not be necessary. We believe the place in my tongue is an inflamed taste bud.
Question about PEG tubes. My radiation oncologist is confident I won't need one. I've inquired twice already and he says that he does not recommend I get one. How can I express my concern with this? I feel like I should get one just in case. Especially as I am still learning to eat some things again and also have lots of nausea and lack of appetite as it is. Isn't it smarter to get one just in case?
Non-smoker, non-drinker
10.28.13 Biopsy R front tongue
10.30.13 Stage 2 SCC dx HPV Neg, age 27
11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin
1.17.14 SO confirmed SCC recurrence
1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins
1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor
2.5.14 Clear CT
2.17.14 Clear PET
3.10.14 Start IMRT
| | | | | 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 | Katy, since you will not be having chemo you will have a slightly easier time of it them patients who have chemo with their rads.
Some members will tell you how important it is to have "just in case" while others will say you dont need it. This debate is never ending, there is no right or wrong, its known around here as the "peg wars". Weather you will need one or not depends on you as an individual. You can always have one put in later if you start to struggle or get a nasal tube which is more temporary and doesnt require surgery. Even if you would get a peg tube you will still need to swallow every single day to help keep the swallowing muscles in working order.
The biggest thing that you need to remember in getting thru your rads is focus on what is within your control.... your intake. Every single day you need to take in at least 2500 calories and 48 oz of water. If you can take more in thats even better, especially water. I suggest you begin pushing yourself now to get that amount of calories in every day. Dont fall into the skimping trap thinking you can make it up the next day, tomorrow never comes and pretty soon skimping becomes routine. Before you know it, dehydration and malnutrition have set in and a hospital stay can happen. Prior to starting rads, talk with your doc about giving you a prescription to get hydrated in the chemo lab. If he wont ok a feeding tube at least he can help you avoid one by getting extra fluids a few times per week. This will help you to feel good too.
If you would like my chocolate peanut butter milkshake recipe let me know. Each one has at good 1200+++ calories, maybe even 2000+. Im not one to measure exact so Im not completely sure the number but its very high. Many days I would drink 2 or 3 of them and never gained an ounce.
Best wishes!
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: Jan 2012 Posts: 112 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2012 Posts: 112 | Hi Katy, how are you doing? Read your story, i've been in this journey too. Almost in your age. I was 29 when i discovered the cancer on the right side of my tongue. I was stage one and all my exams are fine and hope they keep like that for the rest of my life. I think your should ask your doctor about the differenciation of your tumour. Was it poorly diferenciated? It is really fast moving to have those recurrences is a such few weeks. Let us know and count on me 
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | | Joined: Jan 2014 Posts: 17 Member | | OP Member
Joined: Jan 2014 Posts: 17 | Thank you, Christine! That is where we are as well, RO says I do not need one and DO says get one. I am going to wait it out, I think I will do okay without one.
I started RT today. One session down, 29 to go.
Non-smoker, non-drinker
10.28.13 Biopsy R front tongue
10.30.13 Stage 2 SCC dx HPV Neg, age 27
11.7.13 Right ptl gloss and R neck diss. Nodes neg and neg margin
1.17.14 SO confirmed SCC recurrence
1.23.14 Right glossectomy crossing into midline some of L remv and hollowed out inside, neg margins
1.28.13 swallowing strained, liq diet, Back L tongue shows poss tumor
2.5.14 Clear CT
2.17.14 Clear PET
3.10.14 Start IMRT
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