| | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Hi guys
I am nearly 5 weeks post my second neck disection, this time it was a modified radical ND. I am experiencing a lot of tightness and hardness around my scar. The areas behind my ears, and around my throat is tight and hard as a rock.I also have blotchy red skin around these areas. Has anyone else experienced these symptoms? Plus, my cheek is swollen and puffy!!
I am starting radiation on the 12th of April and I know that rads can make contractures worse. Does the tightness and hardness get better with time?
Thanks for your input.
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | This sounds exactly as mine was. In 6 months it will seem different, but mine took almost a year not to feel like a horse's saddle when I touched it.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey girl! Mine is still tight and hard - try to do a little stretching daily to loosen it up a bit. And use a little Vaseline on it to soften the scar - up to radiation then ask them if it's okay to continue - though not likely.
Hugs and much luck 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: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Same here, and I'm five years out. The stretching exercises are really important to maintain as much flexibility as possible, because the rads will tighten things up quite a bit.
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes planning to do some physio during rads... For my arm and neck.... If you soften the skin a little it will help make it feel less like it is going to tear and will allow for some more stretching.
Hugs and healing vibes...
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It seems to be a part of the after affects. 4 years and my neck and throat feel worse actually then right after the 1st surgery. Good luck and hit a home run.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | What everyone else said, Lizzy. I'm 2 years out and the area under my chin on the left is still tight and numb. But gradually I've seen a return to feeling starting from the earlobe on down. Hopefully it will reach all the way one day!
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Liza
You have done a great service to those OCF posters who are primarily read only by having this thread spelling out that the majority of people who get Neck Dissections do have aftereffects that linger for years and years. Today seems to be my day for ranting about what I consider well meaning but misguided advice that not getting a neck dissection is somehow not treating your cancer "aggressively" or not "throwing everything at it".
Yes, sometimes neck dissections are called for, but for many Base of Tongue tumors, they are not needed at all. It is a very serious surgery and as the answers in this thread attest, one with major life quality issues that last.
I'm two years out from my ND and the skin on my neck is still "petrified" on the side they took the lymph nodes out. My entire neck was that way but gradually the right side has returned to semi normal. I did use the moisturizing creams and I also found both the sauna and steam room very helpful in addressing the muscle tightness.
Short answer: YES, "tincture of time" will fix this.
Keep the faith
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
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