Talked with my MedONC yesterday regarding my PET scan of last week. Seems I have two hot spots, one on either side of my neck. So its back to the ENT for another biopsy to see if it really hot or leftovers from last year. Will post up as I find out.
Y'all have a GREAT Weekend.

Hoping and saying a prayer for clear results from your tests.

Waiting is hell. I had a cat scan and get the results on Weds. In the meantime, I will continue to work on being grateful for all I have been given, including this site. My thoughts are with you.

Donna

Gary

I empathize. The last six months have been very worrisome for me. I hope that your "hot spots" turn out to be nothing. You are taking it better than I did (see my post here in the forum)
Great attitude

My understanding, which could easily be wrong, is that the PET scan shows hot spots as potential problem areas which are then examined in detail with the concurrent CT scan (or biopsy). The mere presence of hot spots is apparently only a 'Look Here!' flag.

Gary:

Hope it turns out to be nothing of concern to you. If it is the dreaded OC again, it will have been caught very early which is good. PET scans are known to have false positives, its happened to me and scared me to death. Its easier said than done, but try your best to not worry. Hot spots on a scan could be due to an inflamation or an infection, so many things will set off the triggers.

Gary,

Ditto to all of the above posts. Hang in there. My thoughts are with you.

~Ija~

Gary,

I feel for you. Hang in there and lets hope for the best.

Thanks y'all....did a needle biopsy yesterday, talking to the ENT this afternoon, regarding removal. Hope to have the results back by Thursday.
It was a little unusual to see the mass on the ultrasound screen AND then see the needle come in and take a chunk. Just gotta love technology.
Hope everyone has a GREAT day.

Well it is official..I have been tagged again. ENT called to get the results and I have a lymph node on each side of my neck that is active. The upshot is a double neck disection..he is attempting to get another surgeon envolved and they will do both sides at the same time and he is hoping to remove as little muscle and tissue as possible.
Anyone done a double before?? How did your neck work afterwards?? I'm concerned abit about my ability to wear a motorcycle helmet after the work is done.

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!

Gary, sorry to hear the bad news. Wishing you well.

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

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?

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

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

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

[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.

Gary,

Just like that Verizon cell phone commercial, we're all here to support you.

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,
I don't think anyone gets dressings on the incision for a ND. Just warn anyone who is going to visit that you will look like you have been run halfway through a guillotine but it is really not as bad as it looks. I asked for stitches rather than staples. Make certain that the surgeon is a good plastics man and has done a zillion of these. Will be thinking of you on the 31st.

Take care,
Eileen

Out of curiosity....
Any or y'all ride motorcycles???

I am an avid Goldwing rider and also ride a Sport touring motorcycle year round. I'm worried about my ability to "head check" (turn my head with the helmet on) traffic and actually if I'll be able to wear a full face helmet.

GaryG
I am a fellow motorcycle enthusiast and although I have not had the same experiences as you I belive that if you work at it you will be able to do the double and triple shoulder check. We are all invisible on the road as you know and probably exercise more caution when riding than most car drivers and that is because we have to. Stick to the less travelled roads when you decide to go for a ride the first couple of times and if all goes well then venture onto the busier streets etc. I had to go to an automatic transmission due to my physical limitations but still enjoy the ride.
Cheers,
Mike

I wear a full face helmet. A broken mandible after radiation isn't likely to heal well, and it could be lost entirely. The drawback is with acute xerostomia that drinking water is a must so I have a bladder in my jacket with a bite tube hanging out the front. It took a little looking to find a full face mask that I could flip up the visor in, and pass the tube through to get a sip of water. I ended up with one made in Germany. The other benefit is that it also has the ability to flip the entire face portion up. Also about 2 years of from the ND my range of motion improved through exercise etc., but never returned completely to normal.

[quote=Brian Hill]I wear a full face helmet. A broken mandible after radiation isn't likely to heal well, and it could be lost entirely. The drawback is with acute xerostomia that drinking water is a must so I have a bladder in my jacket with a bite tube hanging out the front. It took a little looking to find a full face mask that I could flip up the visor in, and pass the tube through to get a sip of water. I ended up with one made in Germany. The other benefit is that it also has the ability to flip the entire face portion up. Also about 2 years of from the ND my range of motion improved through exercise etc., but never returned completely to normal. [/quote]
I wear a Nolan N-102 Flip front and wear a Camel-bak hydration system if I'm going any distance...glad to hear y'all are still up on two.

Well Halloween came and went and it looks like I'll get to wear this outfit for a few more days It took two surgeons and staff about 5 hours to open me up, clean out the two problem areas and then put me back together. They were able to leave the muscles and all but one small branch of my jugler, and according to them I am doing very very well....no swelling to speak of both drains already removed...yeah! We go back on Thursday to begin the staple removal and then maybe back to work on Monday...but...I'm not going to push it too hard.

here is wishing you a fast and full recovery. don't push it on going back to work until you feel strong enough my dear... good to get back to life as much and soon as possible, but if we push too hard too fast it tends to backfire. congrats on the great progress to date!