| Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | I had a bilateral neck dissection. Removed Levels I through V, but spared the jugular vein, the sternocleidomastoid muscle and the spinal accessory nerve. Also removed submandibular salivary gland on each side.
Surgery itself is a piece of cake, relatively speaking. You will not be the prettiest thing to look at for awhile, but it really is not bad. I had three drains installed during surgery, all of which were removed before I was discharged. I was working from home as soon as I got discharged, and was back at work as soon as I was allowed to drive, about 2 weeks.
Scar was in existing neck crease, pretty much invisible now. Even though the spinal accessory nerve was not removed, it takes a beating during the surgery. I have shoulder and neck stiffness and discomfort, some lymphedema (referred to affectionately here as "turkey neck"), and residual numbness in the neck. Now, some of this may also be attributable to the spinal fusion surgery I had 3 months before the neck dissection (they used the same incision as a starting point), but docs say most is due to ND.
All in all, it is the easiest part of treatment, by far! Good luck! Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Gary, sorry to hear the bad news. Wishing you well. 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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Gary- My husband had nodes on both sides removed and as Jeff said you won't look pretty but it's not as bad as one would think. Most of the really ugly stuff will be gone before you leave the hospital. Will they be doing more chemo? That's the real tough stuff as you well know. Good luck to you.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Gary,
I feel for you.
There are many here that have had both sides done but usually pre Tx and I hope you hear from some. It sounds like they will not be doing a Radical ND but just popping out the affected nodes so the less damage to your nerves, muscles and blood vessels the less long term side effects you will most likely have to deal with.
Just curious..were you a tobacco user? Did they blast both sides of your neck during rad? How far from the original positive node(s) is the one on that side of the neck now? When did your Rad end?
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.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Gary, I have had both sides done but they were 4 years apart. If you can get them to spare the submandible saliva glands without endangering your life, do so. They don't work as well after radiation, but they don't work at all if they are in the surgical bucket. My first doctor took the one on the right on the assumption that radiation would kill it anyway. My second doctor spared the one on the left so I still have a reasonable amount of saliva.
You most likely will need physical therapy after the surgery. If you have a desk job, you will probabaly be able to go back to work in a few weeks. make certain your chair has arms on it. As to neck stiffness and arm weakness, I have none from second surgery and only a little neck stiffness from first surgery(different surgeons). I had no pain with either operation. As someone said, this is the easy part of treatment.
Good luck to you and take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | Hi Gary so sorry to hear about you as you put it being tagged again...It sucks I can immagine what you are going through and you seem to be handling things well...as far as a double neck dissection not sure I had a bilateral and it isn't all that bad it has it's moments as far as my neck movements go they are coming back fairly quickly. I am about four weeks out from surgery and my range of movement is back 75% I guess it all depends on the dissection how far around they cut..
Best of luck dear and again sorry to hear
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Sep 2008 Posts: 8 Member | Member Joined: Sep 2008 Posts: 8 | I had a full neck disection with 42 lymph nodes removed and no cancer in the lymph the scar is still there and the tightness never goes away. I had SCC under my tongue which was removed. I had two drains on both side of my necks and recovery was slow for me. Good luck
MicheleM April 05,SCC stage 2, tumor removed under tongue and floor of tongue, full neck disection with numerous lymph nodes removed. No radiation or chemo April 09, SCC stage 2 rt side of tongue 30% rt side removed, radiation will follow
| | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Oct 2007 Posts: 83 | [quote=davidcpa]Gary,
Just curious..were you a tobacco user? Did they blast both sides of your neck during rad? How far from the original positive node(s) is the one on that side of the neck now? When did your Rad end? [/quote]
Yep, smoked for a long time. The wife and I both quit about 10 years ago. I think they did most of the RAD work on the rightside (that was where the first one showed)...but... because the actual cancer was on the base of my tongue they seemed to concentrate on the lower jaw and neck area. The original node on the right that swelled is positive..I forget the dimensions but it is itty bitty..the one that caught the ONC attention on the CT scan is on the other side of my neck, and it is about the size of a small pea....it is the one we did the biopsy on. Nov 27th 2007 was my last ride in the TOMO machine.
Looks like we are scheduled for Oct. 31st, guess I'll dig up a pair of Frankenstein neck bolts and have some fun with the Dr's. The ONC wants to wait until after the surgery to talk about doing anymore Chemo.
Thank you one and all for sharing your history...hopefully this will slip right on by and we can return to our version of normal.
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Gary,
Just like that Verizon cell phone commercial, we're all here to support you.
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.
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Yep, Gary, we are all here. Seriously, you will fly through the neck dissection. You will become something of a conversation piece, bolts or not. My son got a real charge out of going to the store with me after I was "presentable" in public, and seeing the reactions of people.
One tip -- check with your doctor before the surgery to see if they are going to put a dressing on the incision. Because my neck felt like I was wearing a brick turtleneck, I just assumed that there was a surgical dressing. Nope -- just the incision and the staples, plus the drains for effect. The unaware visitor can turn several shades of green pretty quickly. ;-)
Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
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