| | Joined: Mar 2015 Posts: 1 Member | OP  Member
Joined: Mar 2015 Posts: 1 | this is my first post here, I am scheduled for what I consider an enormous surgery in a week and a half and it has me pretty freaked out. They are saying the surgery could take 10 hours and that I will be in the hospital 10 days. One thing that worries me the most is having a trach. That has to be surreal, waking up and breathing through a hole in your neck! I am scared of pain, just hearing about adults who have only had their tonsils removed. I am afraid that my life after surgery will be radically different. I am usually a very positive person and have not really talked much about this to my friends and family but this seems like a safe place to share my real feelings. Would love to hear from anyone who has been through this surgery!
12/13 SCC R lateral tongue excised, clear margins 50yo, 12/14 recurrence R lateral tongue, scheduled 6/9/15 right hemiglossectomy, tongue flap reconstruction, tonsillectomy, RND, trach, G-tube. Followed by RT, possibly chemo.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF. What type of surgery are you having?
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: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | I am sorry to hear about your recurrence. I am fairly new to this forum myself, but I definitely can relate to the worrying and fear of impending oral surgery like the type we all go through. I am also an RN and I live in Louisville, KY. I am being followed at The James Graham Brown Cancer Center. I had great care when I was there, my very young nurse was amazing the night after surgery. I will be thinking of and praying for your speedy recovery. Denise
Last edited by Neicy; 05-30-2015 12:18 PM.
Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Rivergypsy, it is a big surgery. Many of us here have been through it once, sometimes twice. The tonsillectomy as well as the tongue reconstruction is something I haven't had.
The trach is a horrible nuisance but it's bearable. As the days go on they adjust it so that you can talk. There's only a certain amount of time when you're in full trach mode and writing on whatever scrap of paper or whiteboard you can find in the litter by your bed. I did 100s of rounds of the hospital ward with the trach in so you're not too trapped and breathing is no problem. Mucous is the enemy with regular suctioning an intrusive thing when you're feeling blah. By the end of my time with the trach I could suction it myself. So, it's uncomfortable but doable.
Pain? Pain relief after surgery is usually total. Any breakthrough pain is quickly dealt with. The more surgeries I've had, the more I have got used to episodes of pain and see them as more bearable than the generalised, ongoing discomfort of being in post-op. Staff have always been conscientious in getting pain under control, with the pain team called for if things get too bad. There's no need to be in pain but when you go home you'll need to take meds with you. I have found that the pain goes away in hospital only to come back when I go home and don't have access to the full arsenal of pain control. It waxes and wanes.
You probably know all this. I really just want to empathise. I wish you well.
Maureen
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | Hi there... I have had the same surgery - mine was 14 hours - but all went well - Surprisingly I wasn't really in pain. Mostly numb as they neck dissection tends to kill a few nerves. they do come back - though slowly and not completely. I still have dead areas on my neck and a bit along my under chin area. For the most part I recovered quickly. The trache is a nightmare... not gonna lie and suctioning is the worst. Hopefully they will only have the non fenestrated trache in for a day or so then move to a fenestrated where you can breath through your mouth and nose as well. Bring a pen and paper or ipad and something to do...  hugs and blessings 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: Dec 2014 Posts: 24 Member | | Member
Joined: Dec 2014 Posts: 24 | RiverGypsy...I feel your apprehension. I had oral cancer surgery in February which required a trache. I needed it as well and it wasn't a lot of fun to deal with, but the drugs they had me on morphine & ativan) really helped with my anxiety. I didn't tolerate the trache well - no gonna lie - but I was on steroids for something else prior to surgery and it greatly affected my ability to heal quickly. The suctioning, although unpleasant, is really helpful and hopefully you will transition quickly to doing it yourself.
I told myself before surgery (especially when I found myself dwelling) that worrying about things I have no idea about will only use up the energy I needed for doing other more important or more enjoyable things. It was good advice and I took it when I could, and prayed about it when I couldn't.
Keeping you in my thoughts and prayers,
HB
11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
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