| Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2013 Posts: 32 | My surgery is scheduled for Thursday, 1/16. I will be having a complete glossectomy and dissection of the right side of my neck. The nodes on the left side have already been removed.
I met with the surgeon today who is going to be doing the reconstruction. This was the first time I have met with this person. I was very pleased with our conversation, and he made me instantly comfortable. He was very straightforward in explaining the procedure and the decisions that he might need to make along the way.
From his reading of the PET scan, he said the tumor was close to the larnyx. Depending on the exact involvement, he may have to shave some tissue off of the larnyx. If he needs to take too much, he said that it could impair my swallowing, so I need to make a choice in advance. Basically, the choice in that case is to a) keep the larynx to preserve speech but be unable to take food by mouth or b) remove the larnyx and be able to eat, but loose the ability to speak more or less normally. The surgeon emphasized that there are ways to articulate sound without a larnyx and be understood.
I have been thinking about it this afternoon and have decided that I would rather have my larnyx removed if it came down to a choice between eating and talking. Never eating by mouth would be pretty devastating to me. I hate to loose my larnyx, but I think I could deal better with an alternate means of speech than I could with a life of not eating by mouth.
The most important thing he said was that he's confident (within the uncertainty inherent in cancer) that I have a good shot at successful treatment this time around. He believes they can get it all with the surgery. It's very likely that I will then need to go through radiation + chemo. I really hate to go through that again, but I really like being alive, so it will be worth it.
As for the reconstruction itself, he will be take tissue from my thigh for the reconstruction of the tongue. If they tumor has involved my jaw, it's possible they will need to take some bone from my shin to do a reconstruction of the jaw.
So, here I am waiting for the surgery. Though I am terrified, it's good to have everything lined and understand what is going to be happening. I still can't believe I had this stupid recurrence, but it happened and there is nothing to do but move forward. I am confident in my surgical team. Life is going to change more this second time around, but I adapted the first time and will adapt again.
Male, non-smoker, very light drinker, age 56 at diag. 9/18/12 - Diag. tongue cancer, left lateral border HPV 16+ 9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed 11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.) 12/26/12 - Rads compl. 1/18/13 - Cituximab compl. 3/13/13 - PET clear 12/19/13 - Positive PET 1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4) 1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | 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 | Hi Roger, sounds like a good plan. Kris had a total laryngectomy with his Glossectomy as the epiglottis was involved. Leaving the larynx would have meant a life time of aspirating, even saliva. Trust in your plan and surgeon. You will be okay. When you feel up to it let us know how the surgery went. Thinking of you. 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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Roger C.
You did your research, know the options, have set surgery plans, date, and most of all have trust in your doctors. I wish the best for your surgery, and you will be in my thoughts. Like you said, you've did this before, and will do it again! Take care, and thanks for updating.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Roger, a lot of us are watching your thread, waiting hopeful for good surgery results and to hear from you again after.
Stay strong,
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: 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 | Best of luck hope everything goes amazingly well.
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: Dec 2013 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2013 Posts: 32 | Thank you all for your kind wishes and support. I will post back with progress when I have my wits about me again.
Tammy, your husband Kris's experience with the laryngectomy makes the thought of it easier for me if it has to happen. The eating advantages are obvious without the fear of aspiration, and it sounds like he is able to communicate fine. I hope I can keep my larnyx, but if I can't I have Kris as a role model for a good recovery.
Male, non-smoker, very light drinker, age 56 at diag. 9/18/12 - Diag. tongue cancer, left lateral border HPV 16+ 9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed 11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.) 12/26/12 - Rads compl. 1/18/13 - Cituximab compl. 3/13/13 - PET clear 12/19/13 - Positive PET 1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4) 1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | 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 | Hang in there, Roger!
Its amazing the things we can adjust to isnt it? I greatly admire your upbeat attitude and how easily you are taking this in stride.
Hoping your surgery is a success and you have a speedy and painless recovery. Dont be afraid to be your own advocate and speak up if you need something. Dont be afraid to ask for the pain meds. Having a patient hurt is not helpful to their recovery at all, it makes it much harder to bounce back when you hurt.
Im not sure what your speaking ability will be but if you will have a trach, ask specifically for a possey muir valve trach. The possey muir valve trach allows the patient to talk easily without having to do anything special.
Wishing you all the very best with everything! We are all in your corner cheering you on. Please post when you are able or maybe you could have a relative provide an update for us. We all worry about each other when one of us goes for a major surgery. 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: Dec 2013 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2013 Posts: 32 | Thank you very much Christine! Believe me, I have plenty of moments of despair, but I am doing my best to face the situation bravely. In a few days all detectable bits of this horrible thing will be out of my body. That is something to look forward to. Of course there will be rads+chemo down the line, but I will worry about that when it gets here. In the mean time, I will shamelessly allow my wonderful family to treat me like a king as I recover from surgery.
The first time around, I was amazed at how painless the recovery was. The team at the hospital did a great job of managing my pain. I am hoping for a similar experience this time around, though the surgery is of course more extensive. I'll be sure to make it known if I am having pain.
Thanks for the tip on the trach. The first time around the trach did not have any sort of valve. When I got to speaking, I had to cover it with my finger. After a while I was able to cap it off during the day so speaking was easy, and then the wonderful day finally came when it was removed altogether.
Thanks again for your kind wishes and support. I'll be sure to post when I can or get my daughter to do so for me.
Male, non-smoker, very light drinker, age 56 at diag. 9/18/12 - Diag. tongue cancer, left lateral border HPV 16+ 9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed 11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.) 12/26/12 - Rads compl. 1/18/13 - Cituximab compl. 3/13/13 - PET clear 12/19/13 - Positive PET 1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4) 1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2013 Posts: 32 | I am alive! Complete glossectomy. Clean margins. In surgery 12 hours. They saved my larynx. They are confident they got all the cancer. Right neck dissection removed all nodes, many of which were involved. Chemo will probably be started in a month. No bone involvement.
Male, non-smoker, very light drinker, age 56 at diag. 9/18/12 - Diag. tongue cancer, left lateral border HPV 16+ 9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed 11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.) 12/26/12 - Rads compl. 1/18/13 - Cituximab compl. 3/13/13 - PET clear 12/19/13 - Positive PET 1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4) 1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Congratuations on a successful surgery! Rest up!
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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