I am writing this because I am one week out of having the lymph nodes removed and am still in a bit of shock. In March of 2006, while brushing, I felt a sting on the inside of the gum near the lower left molar. I thought I had cut the skin. By October 2006, I had bleeding and saw a Peridontist, who said it looked like I had cut the tissue while flossing. He cleaned the area and let it heal. By Jan 2007 I had a lesion growing along the gumline and had the Periodontist perform a biopsy. He removed the tissue and a significant margin around it. The biopsy came back as SCC. I was sent to a oral cancer doctor who noticed that the biopsy site had healed nicely and who had another pathologist look at the slides. The diagnosis was questionable. SCC vs Dysplasia. A second deeper biopsy at the same site proved dysplasia. Monthly checkups were done. In Jan 2008 a lesion appeared on the opposite side of the tooth. In Feb 2008 another biopsy was done, this time showing severe and aggressive dysplasia. By April the area around the biopsy site was discolored, rough and expanding. In May 2008, I had a marginal resection of the lower jaw removing two teeth and bone. I also suffered a jaw fracture which severed the sensory nerve to the lower chin and lip. A biopsy of that tissue confirmed SCC and showed erosion into the bone. Because the condtion had been active for so long it was recommended that I have the lymph nodes removed. On June 3rd, 5 days ago, I had a neck dissection and am now awaiting the results of that biopsy.

Yes I am in bad pain, but mainly from the severed nerve. Pain at the surgery sites has been minimal. There is numbness in the ear and neck, and of course the chin.

Yes I am depressed, having to look at that neck scar and knowing that I am going to have to deal with this nerve pain for quite a while.

I would like to say something positive and close this, but I am not there yet. As I said above I am still in post surgical shock, not knowing where this is taking me, or even sure that I want to go there. I can only hope for a resolution to the pain and a clean biopsy report on the lymph nodes.

Thank you for this site.
Dave

Dave, Welcome to the club no one wants to belong to. It's been quite a year for you and you may have much still ahead of you if radiaiton and chemo are recommended. It sounds like so far you have mainly been treated with surgery. Are you being treated at, or have you requested a second opinion from a CCC? You should definitely get an opinion from a place where a team of doctors are dedicated to treating oral cancer to be sure further treatment is not recommended.I know you may feel like you've been through enough, but since this is an aggressive cancer, it is also wise to treat it aggressibvely.

As for the neck dissection scar, I know you feel like Frankenstein right now, but believe it or not, it will almost completely disappear eventually and you will get used to the numbness (I say this from personal experience). I don't know what to say about the nerve pain except that I hope that will get better for you over time as well.

You don't have to be positive right now, you can be depressed and scared. Those reactions are completely natural and NO ONE wants to go on the journey you're on. But there are lots of fellow travelers here and people who have been down the entire path and recovered so feel free to come here to vent or with questions. You can also search postings here for information--there's a lot of good information waiting to be found.

Nelie

Dave,

Lets hope that they have gotten all the cancer and no further Tx is warranted. This is an aggressive cancer so as Nelie says it's best to get the opinions of the best and that usually is at a CCC where they see 1000's of patients similar to you every year and they have a team approach to evaluating your case. As you said you are in shock and we all were when we were Dx'ed with cancer. There are many mental issues we have to process and they all take time for our body and mind to get used to but they usually do so take whatever time you need. I found that opening up to family, then friends, then this site helped me get over the cancer hump.

Update the lymph nodes were free of cancer, and I have been told that no radiation/chemo is required at this time. This is most excellent news.

I do have a question about the scar from the neck dissection. The stitches were taken out, and small strips of tape were placed over the scar. The area is bulging. How long does it typically take before that flattens out? Also now that the drain tube is out, should I try massaging the area where the fluid is now pooling? There is so much I don't know about the small details.

Hi Dave,

Can't offer much advice relative to the neck dissection since I've not had one, but there are plenty of folks on the board who will be quick to help you there. I just wanted to do a little happy dance for you with your most wonderful news.

Great news Dave.

Hi Dave,
You must be most relieved that your lymph nodes are free of cancer. Fantastic News.
Regarding your worries about the scar from the neck dissection you will find some helpful information on a previous post under
"Dealing with Facial Disfiguration--Help!! " which I also posted on.
http://72.47.208.43/forums/ubbthreads.php?ubb=showflat&Main=7263&Number=74375#Post74375

Cheers
Gabriele

Dave,

First of all congratulations on having clear nodes. As you can see by my signature, I also had surgery only.

As far as the scar is concerned, I had a neck disection over 3 years ago and it's hard to remember how long it took for the irregular surface to go away. I can tell you that nobody has any idea that I had a neck disection, unless I tell them.

As far as the lymphedema is concerned, the best thing to do is to see if there is a physical therapist associated with your hospital or in your area, that can teach you the proper method for moving the lymph fluid to the other side of your neck. If this is done, it will establish new pathways for the lymph to drain. Once I was shown, I was able to do it myself until it was no longer needed.

Good luck and I'm happy to hear that you got such good news.

Jerry

Since everyone is different you can see that no one gave you a definite time line for this to go back to normal. My example will be somewhat apples and oranges, since my dissection was done on radiated tissue. The worst of the swelling lasted for about 6 weeks, but even then there was kinda've a roll of puffiness right above the scar. I found a massage therapist that 3 times a week worked that area massaging downwards towards my chest (where you have tons of lymph nodes around your clavicle, armpit and even in the middle of the chest. Even though the pathway for these fluids to leave the area has been interrupted, it will over time redevelop ways of draining properly into the rest of the nodes elsewhere in your body. I saw the massage lady for about 6 weeks and things started to improve rapily after that. The next step was a flat neck that kinda felt like I was touching the leather of a hard saddle (if you have not been around horses, this is probably not helpful as a description) but my neck had no feeling in it, it was very firm, and that's about the best I can describe the sensation. You can see the post operative picture of the roll, the neck burns, dissection scar and finally a finished product on my story which is in the people section of the main web site under founder's story. It does get better, but figure at least 90 days. I lost an inch in dress shirt collar size in the process..... not that you are likely to be hot to go buy a new collared shirt to have near that area for awhile.

I had a neck dissection first then radiation about 8 weeks later. By the time I started radiation, most of the puffiness around my neck dissection scar had gone away--even without drainage massage. But ,as Brian said, I did have a litle roll of puffiness above the scar that hung on and seemed to be made worse when I had radiation. Over time since then, however, that has gone away too and my neck is actually pretty skinny right now. I also have the leathery/"woody" neck thing that Brian mentions but I'm told that is a result of radiation.

Nelie

I went to PT 3 times a week after both neck dissections and highly recommend it. My PT not only worked on the lymph nodes, but also strenghtening the arm and helping the scar to heal. I highly recommend it if you can find a good one and it should be covered by insurance.

Take care,
Eileen