| Joined: Aug 2013 Posts: 54 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2013 Posts: 54 | Ok. Give me details about this surgery I am about to have. I will be having the forearm flap tongue reconstruction.....neck dissection on one side and a trach. What's the worst part. I just want to be prepared. My team said to expect 3 days in ICU. Yikes! Lights....tubes......machines.....pain.... I am really dreading this. How long before I can talk ? Swallow? Breathe through my mouth? Are you hungry when you have a feeding tube? How do you go to the bathroom when you are all hooked up? Any answers or advice is greatly appreciated.
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi, You are doing a lot of thinking ahead and getting prepared and that is wonderful. What you don't want to do is push to hard. Listen to your body and get lots of rest as that is what is going to repair your body the fastest.
Going back to teaching full time and being on your feet and talking so much seems like pushing a lot. Neck dissections create other side effects like muscle pain that extends below the neck area. Just being able to stand and talk all day is a HUGE effort, one you take for granted when healthy.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Teacher,
OK, ICU is actually the good part - it's quiet, and the care is fantastic.
You'll probably have 4 drains from the neck, your trach, an IV, and possibly Doppler wires to monitor the blood flow to the flap, which sticks out of your neck.
You'll also have an ng tube down your nose to stomach for feeding. I asked my dad to take a picture of me in ICU, which is on my face book page (Tina Huizinga) if you want to see. You can see my thumb up in the photo.
I had what almost looked like a cast on my left arm for the graft, which came off at day 7. It looks gross, but has gotten much better. The follow up photos are there too.
I had the trach for 7 days closed and one day fenestrated, at which point I started talking (badly so don't panic). The day the fenestrated tube came out they had me swallow some water, moved up to yogurt, and it went from there.
There was no neck pain. There was pain in the forearm from the graft, especially when they took the staples out, but I am allergic to local anaesthetic, so mine was all done without that or any pain killers.
The skin graft from my leg hurt, but that's like road rash.
I got upset during my first physio in hospital when I realized how limited my movement was, but that just took time.
Hope that helps. Feel free to "friend me" on facebook if you want to see (just send a message so I know it's you).
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | I sounded like a Dalek for a week, probably because of the throat tube. My surgery was milder than yours by a long shot. We homeschool and I think we will be taking it very easy on me for longer than I thought. On the other hand, depending on the level you teach, it is a great time to teach compassion and responsibility to the students!
I look forward to opening my mouth wide enough to bite things.
As for the bathroom, the nurses had to unhook me each time. Don't wait till you are desperate!
I was told to hold off on most activities till my three week follow-up, which seems wiser by the day. Of course, they also know I study tae kwon do and cane fighting, and I tend to hit myself in the head with my cane. . .
Neck is too stiff to drive safely so far, even if I were not on painkillers.
Hope this helps a bit. Don't overdo, you will be back soon enough to your class!
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
| | | | Joined: Aug 2013 Posts: 54 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2013 Posts: 54 | Thanks Tina and Kris. Good information. Much appreciated.
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Kristen....Cane fighting AND tae kwan do? Sounds like a very tough school
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | LOL, my kids do other sports, but my husband and I are enjoying martial arts.
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
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