Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Joined: Jun 2009
Posts: 138
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Jun 2009
Posts: 138
I think it's pretty common. I have permanent damage to my right shoulder but it isn't really painful, just have lost some function and feeling in that shoulder. I also have the lip thing making my mouth look crooked kind of like I've had a stroke. But as far as recovering from the surgery, I was home from the hospital in three days and Tylenol was all I took. My bigger problems are as a result of radiation.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Hi Seth,
I must have missed your earlier post as I would have responded.
My experience does not seem to be as bad as some others however as you had the radiation first that may have been an issue.
As your surgery was nearly 1 month ago can you let us know how it went and post if you have any questions?
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Jun 2009
Posts: 3
Member
Offline
Member

Joined: Jun 2009
Posts: 3
I had a left neck dissection 18 months ago. I've bounced back quite well. The surgery wasn't too bad. INITIALLY I looked pretty rough. Following the neck dissection, my smile was completely crooked. A nerve in my back/shoulder area was cut so I also had a drooping shoulder. Because of the nerve being cut, I lost a great deal of muscle and movement in that shoulder and upper arm.

NOW I am back to my pre-neck dissection self. The scar on my neck is the only way you would know I ever had surgery. I completed 28 physical therapy sessions to work on my drooping shoulder, range of motion, strength, etc. They payed off. And although I thought my smile was ruined forever, I am happy to report that it is back and probably even bigger than before! The only difference to report is that I've lost most skin sensation on the left side of my neck between my jaw line and collar bone (e.g. I can feel pressure on my neck but don't feel the touch of fingers on my skin).

I strongly encourage as much physical therapy as possible. It helped me bounce back without any evidence of surgery. And make sure you do any and all exercises that may be recommended by doctors or physical therapists.

Good Luck!


Age 23 at Dx - Oral Tongue SCC, Stage IV, T3N2bM0, HVP-negative
Non-smoker, occasional beer, exercise daily
Treated at MD Anderson (consults at Johns Hopkins and Sloan Kettering)
3/2009, 6 rounds paclitaxel, carboplatin, cetuximab
5/2009, Partial glossectomy and left-neck dissection (39 nodes removed)
6/2009, IMRT 60 Gy in 30 fractions, PEG
10/2010, Spontaneous Pneumonmediastinum
Now, Still doing great with minor long term side effects (low WBC, neuropathy, arthritis in jaw)

Joined: Jun 2010
Posts: 153
Stily1 Offline OP
"OCF Canuck, across the pond"
Senior Member (100+ posts)
OP Offline
"OCF Canuck, across the pond"
Senior Member (100+ posts)

Joined: Jun 2010
Posts: 153
Update time! Sorry to be slow to follow up. I had my neck dissection here in London (UK) a month ago, it went well and they found very little to remove, so my surgery was "bog simple" and the extent was minimal, meaning I've ended up with almost no nerve damage at all; I've only ended up with a numb area under my right jaw line, down to the horizontal incision line. They gave me some stretches to do, but I've not needed any phisio, and now, a month in, I have minimal stiffness or soreness.

The really good news is that the material they did remove only contained dead cells; no viable cancer at all! So, my cancer is in clinical remission (they won't use the "cured" word for five years). This is the best possible outcome at this time, and means my radiation/chemo in Canada was successful.

The numb area under my jaw line has already shrunk noticeably. It's still quite odd-feeling to touch it, and shaving gives me the creeps, but as things go this is not so bad.

Regarding Monicacc's question about how common nerve damage is, I'm afraid that will entirely depend on how far they decide to go in removing material, and I understand this ultimately is decided during surgery. The more they remove, the more potential for trauma or damage to nerves. In my case I was fortunate, in that they found almost nothing to remove.

For me, ultimately, the neck dissection has been much less of an issue than chemo/radiation treatment, which I had first, ending in late April 2010. I didn't have significant pain following surgery (only required the local equivalent of Tylenol and Ibuprofen), although the drain was pretty gross. They removed that after two days in my case, and sent me home. A week later they removed the tape over the surgery scar (and I was pleasantly surprised at how little the scar was visible already at that point) *and* gave me the good news about the material they removed.

I'm having much more trouble with the residual side-effects of my radiation/chemo treatment: dry mouth (much more trouble than I would have imagined), numb soles of feet, changes to digestion, sensitive fingernails(?), sensitive hair follicles(?), dry skin(?), vision changes (maybe just age?), trouble with concentration, trouble with optimism (lack thereof, although this may be related to other life changes). I find myself in London because this is where my wife has professional employment, but I'm having real trouble fitting myself into this surprisingly foreign place, and of course, employment prospects seem very grim right about now.

I can only give it time, and try to be a good house-husband. Oh, and try to get some exercise, which has historically been my answer to life's challenges. I've started climbing the stairs in the 11-floor building we live in, and jog/walking along the Thames. I'm quite out of shape after 8 months of inactivity.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Joined: Sep 2010
Posts: 71
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2010
Posts: 71
I had some vision changes after my neck dissection surgery...I can't tell if it was going a week without my glasses or if, because of the tightness of the scar, I can't get my eyes to use the area of my glasses that are the no-line bifocal area. :o) Sorry to hear about the many sensitivities - hope they go away! I had the surgery in late Sept. and other than the scar being tight because of now doing radiation, it wasn't bad at all. Yes, the numbness under the chin is weird! :o)

Michele in IL


Female - 53 no smoke/drink
tongue Biopsy 8/2010
Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear
Radiation started 11/2, ended 12/17
Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22.
passed away 1/12/12
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Very interesting to read all these varied reactions to the surgery. In my case I was left with a tongue that now, 20 months after the operation, is still numb on the left side. The left side facial neuropathy is better but also still far from normal. None of my docs seem to know if I'll ever regain feeling in the tongue. It's a strange sensation and I know a lot of you have similar strangeness and worse.

But very glad to be alive!
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: Nov 2010
Posts: 17
"OCF across the pond"
Member
Offline
"OCF across the pond"
Member

Joined: Nov 2010
Posts: 17
Monica, don't know if this is reply is too late to advise you but I had a neck dissection done at the same time as a partial glossectomy(about 50% of my tongue) and graft of a flap from my arm. On discharge from hospital after ater about 10 days I could barely raise my arm to the horizontal at the side. A couple of months later afer some advice from a physio on exercises, I have complete mobility back. I had 22 lymph node removed so they poked around in there quite a bit but obviously avoided any damage to the accessory nerve that controls the shoulder muscle. Can't help with statistics. Its now 6 months on and my scar has healed beautifully. Neck is still strange to touch and some patches of numbness which have receeded over the months and I am told should improve still further.


Diagnosed Early April 2010 SCC left tongue t3n1
PEG insertion 26th April 2010
Patial glossectomy with flap from arm and left neck dissection 28th April
20 sessions of radiotherapy in June
PEG removal Today - yippee! 19th Nov
Joined: May 2010
Posts: 135
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2010
Posts: 135
Stily, so glad to see the update on your neck dissection and that you fared well. And a big YEEE- HAAA on the no-cancer findings!!


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
Page 2 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
iMarc845, amndcllns01, Jina, VintageMel, rahul320
13,105 Registered Users
Forum Statistics
Forums23
Topics18,170
Posts196,933
Members13,105
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5