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#169917 08-25-2013 07:03 PM
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hello all, I wanted to know what will my life be like after the neck dissection that is coming up very fast. My doctor said that he will know how extensive the surgery will be only after he had me on his table with a gash in my left neck. Say it becomes clear that it has to be a Radical neck dissection, what might I expect? I am being strong for my whole family that tell me just to keep a good attitude,"you'll be fine"! Well hello? I have recurrent cancer. The first time around was a walk in the park really compared to some of the stories I've read about. even though I was staged at level 4 SSC of Toncil the first time around. But this time it feels so much more real. This time RSSC with met to left neck is what I have to deal with. I don't think my family knows how bad my odds are. Don't get me wrong I am very hopeful and taking care of what I have to. But I keep thinking this will be the last family bbq that I will be for lack of a better phrase, "In tact". I am so worried about the fact that I am HIV+ and the last treatment hit my numbers hard. And now that their starting to inch up. I am worried about the annisteshia I don't care about the spelling right now.I been on one sort of benzodieasapine or another for 20 years (daily use) And I take suboxone which is opiate replacement therapy without the daily treks to the methadone clinic. so I have tolerance like a moe foe. So that's tolerance to tranquilazers and opiates. What if I wake up? That cant be pretty. And will they be able to control my pain? My mind has been altered by these medications for years and years. I don't know that they can overcome my tolerance. A am really hoping that out there their is a addiction speiselist who likes to write prescriptions. So if you were his patient or the patient of some similar doctor will you let me know how things went . And I know that no one can tell me for sure , there are so many variables . Somewhere in the ballpark would set well with me. Thanking you, Shawn U.





f


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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Shawn,

I had a bilateral neck dissection in October 2012 (and I had woken up during a previous surgery - my body is weird with drugs in general - but my surgery which was 14 hours went without issue). I can tell you that I came through fine, and within 6 months was playing baseball.

I can't speak to the HIV issue, but the best advice I can give is for you to be completely honest with your doc about the issues.

The surgery isn't that bad - you look like a train wreck, but there really wasn't much pain as the nerve damage prevents it. I was off all pain killers in 4 days.

Good luck with everything.


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
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Actually, I thought that the neck dissection was a piece of cake compared to the radiation and chemo. I also had one third of my tongue removed. The radiation is what has really done a number on me.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Shawn,

Sorry about the recurrence but where did it recur?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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There are risks with any surgery, and it also depends on the experience of your ENT. I had three neck dissections, two that were radical, and one of them with radiation directly on the tumor during surgery, and a pec flap. These were the easier than chemo and radiation, and chemo was far worse than them all for me. Life is good. My neck is tight, numb, have limited left raising above my shoulder, limited trapezoid movement, but not much pain. I have more severe neuropathy in the legs, feet, slightly in the hands that bother me more than anything else, from chemo. A MRND and RND are basically the same, except the first preserves some structures, but the RND removes the nerve, vein and neck muscle, and lymph nodes in levels II-V. A MRND may just remove levels II-IV, sometimes. Good luck.


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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hey there... as a person who has had a neck dissection I can tell you... it's not that bad. You wake up with drains, there will be swelling but for the most part you are numb, your pain will be minimal. I was off pain meds day 2 - I have a high pain tolerance it seems, but because they cut the nerves in your neck you have more discomfort (not being able to feel your face from the ear down - stiffness, and your shoulder will be highly screwed for a while0. You will need physio for your arm and shoulder when all this is done. I am not sure if you will be meeting with the anaesthetist or not but makes sure your surgeon is aware of your concerns - re your tolerance to pain meds and anaesthesia. best of luck...
it will not be that bad.


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
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Thank all of you for your responses. They are greatly appreciated. My stress level has dropped after reading them. I really just want to be on the other side of this thing so I can get back to my life. From what I have read oral cancer is a real sneaky little bugger, so many recurrences it seems. Or maybe its just that people who get the all clear don't post here anymore. Well in any event thanks again. Have a stellar day!


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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I thinks it's half and half - I think recurrences depend on a lot of things. The drugs used (Erbitux vs cisplatin) initial treatment (surgery vs no surgery) and where they radiate, then there's your immune system, and staging and differentiation. All of it plays a role. smile hugs.


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
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Many members will return to their old lives and only return to post anniversaries. Others avoid OCF when they are well as it makes them think of their own mortality. Some other members are just too busy to spend time here, they are out living a good life. More of the ones who stick around have gone thru recurrences so that may appear that most OC patients will go thru it again. The odds actually are more will NOT have a recurrence than will.

Just think, next year this time this whole thing will be a distant memory.

Best wishes!


Christine
SCC 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 smile
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[quote=sunderwood1111]Thank all of you for your responses. They are greatly appreciated. My stress level has dropped after reading them. I really just want to be on the other side of this thing so I can get back to my life. From what I have read oral cancer is a real sneaky little bugger, so many recurrences it seems. Or maybe its just that people who get the all clear don't post here anymore. Well in any event thanks again. Have a stellar day! [/quote]
I know what you're talking about. I was on this forum daily for a while and from reading posts it just seemed like I should pick out my coffin and be done with it. Not that I'm saying that is ever anyone's intention. I mean lets face it. When you're first going through this you're not exactly thinking clearly and I can see now that I sought out worst case scenarios.
But once I got better I slowly stopped coming on to the forum. Partly because my oncologist said I had read a lot of misinformation and it clearly wasn't helping me as I wasn't utilizing it properly. And partly because I felt better.

As far as the neck dissection goes for me the operation side of the whole process was the easy part. I will say I have less strength in my neck but nothing dire.
My oncologist also said that the 50% survival rate is ridiculous because you can't generalize people whose only commonality is that they had similar forms of cancer. She said in my case there is very little chance, less than 1% of it returning.


Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
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