Hi everyone! New to Board...mom battling cancer..
What a great site for people. I want to share a quick story so people out there do get a second, third, or fourth opinion.

My mom has had 3 neck dissections to remove cancerous lymph nodes. Following the 2nd one, the ENT closed her up with cancer surrounding the jugular, carotid and into some muscle mass calling it inoperable. He did not want to continue in case of possible stroke or disfigurement. His report to my dad & sister was that she is stage 4 ca of neck, inoperable and to not bother with a second opinion as no one would risk getting it out surgically. He pretty much said 3 mos to 1 year & get our affairs in order!

We had several doc's agree with this but then went back to an oral surgeon we dealt with in Florida who absolutely disagreed saying he thought he could get it all surgically (possibly sacrificing the jugular vein and muscle). Last week the surgery was done and according to CT scan all the CA was removed surgically (including removal of muscle & jugular). I apologize, I never found out which muscle but the one that helps you shrug your shoulders. Now on to a 5-6 wk course of Cyberknife radiation to "zap" some hot spots on her right side & IMRT therapy for where the surgery was done. Prognosis is good for getting it all for now. Unbelievable turn of events from No Chance to a much better prognosis...so please always get a second (or more) opinion.

I'm not sure if she ever had a primary tumor site identified but there is a compication in this case. We think it started from a condition in her mouth called leukoplakia...worse than that...She has a rare form of it called Proliferative Verrocous Leukoplakia which seems to be not well understood but often turns to cancer. Does anyone have more info. on this condition or what to do about it? She's been doing a nystatin oral rinse and takes betacarotene & selenium (don't know how much) to manage it & keep it from getting worse. Her oral cavity does not have cancerous cells now, she has had precancerous areas removed surgically (I guess this condition IS precancerous all the time).
I feel like I've wrote a novel but also like I've given you a very vague idea of what's going on!! Any comments or info. about the original leukoplakia would be appreciated. And best wishes for all of you I've read about on here!!!

Hey and welcome,
My husband, Dan, had a sore on his tongue which after months was biopsied and turned out to be cancer, stage 3. He had partial glossectomy, modified neck dissections both sides, trach and graft. The nodes that were taken were negative for cancer, so no radiation indicated at the time. Meanwhile, Dan gets some suspicious looking "spots" around his graft on his tongue and were biopsied. They turned up to be PVL disease also, very rare, no cure and definitely precancer each time. We were trying to get some help for this when he developed a swollen gland about 3 months post tongue surgery. The oral surgeon said infection and put him on antibiotics. We happened to have an appt with another specialist regarding the PVL and brought the CT scan along and asked him to look at it. It took him 2 seconds to feel Dan's neck and look at the scan and he said 100% positive and get it out now!! That was only 2 days after seeing the oral surgeon. Dan had a radical neck dissection Christmas eve and they said they couldn't get it all because of being in the carotid and jugular and only option was chemo/rad. They said no other surgery was an option. He just finished 8 weeks chemo/rad and it was a pretty long, hard road. Now we have to wait a month before CT and MRI testing. He now has another PVL patch on his tongue that they have been watching because they obviously couldn't cut his tongue during chemo/rad. We were hoping that the treatment would kill the patch, but not sure it did at this point. It's very interesting to me that you ended up with someone who would do more surgery because it sounds like they have the same problem going on. We were told sometimes they can rework or rebuild the carotid but Dan wasn't a candidate due to where the cancer exactly was, I think. We believe now that the orginal cancer sore on his tongue which is the primary site might have been proliverative verrucous leukoplakia (PVL) also, but will probably never know. There isn't very much info about PVL and our oral surgeon hadn't ever heard of it...he had to look it up. If Dan's tests come out negative for cancer, we will have to pick back up and try and work on the PVL disease again...too many things at once, but it is nice to hear about the surgery being successful. Unfortunately, after Dan already having chemo/rad, not sure anyone would try surgery now.

Take care...if I find anything more out about PVL, I will surely let you know. Good news about your mom...that is our hope, too!

Take care, prayers are with you!
Debbie

Tracee & Debbie,

My mom had luekeplakia for 10 years always precancerous before it finally turned into cancer in April 03. How do you know that what they have is a rare form of luekeplakia? I'm not sure what form of luekeplakia my mom has?

Danielle

Danielle,
They biopsied some "suspicious"spots around Dan's graft after his partial glossectomy and it came back PVL, the rare form. I have heard that some people have just the leukoplakia like your mom for years w/o it turning into cancer...they say Dan has the rare PVL kind and that the patches that come are definitely precancer and definitely will turn into cancer if not removed asap. We were trying to find out anything else we could, but got the sidetract of neck tumor cancer before we had much chance to get more info.
Thanks,
Deb

Hi Again-
I posted yesterday & noticed it didn't show up on here????? Anyway...
Debbie-Regarding the surgery my mom had, I guess the cancer was surrounding and attached to her jugular/carotid but hadn't invaded inside those veins yet so the doc was able to "scrape" it off the carotid...he did remove the jugular though, I think, because you can..preventative move, I guess...your other veins take over the role of leading blood out of the brain. Did that make sense?? This doctor is an oral surgeon out of the University of Miami Hospital and is supposedly an expert on PVL...I too got sidetracked when trying to learn about PVL when mom got SSC neck...there just doesn't seem to be much info. on it out there. The regimen for inside her oral cavity to keep cancer at bay is a Nystatin rinse, and oral betacarotene and selenium (maybe ask your MD. about that). Not a cure but supposedly manages the condition from getting worse.
Dani-I have no idea how they differentiate PVL from "regular" leukoplakia...my mom's also had the condition for approx. 10 years prior to neck SSC. But maybe the regimen I mentioned above is appropriate for her too??!!! I intend on looking for more info. however, I may disappear from this site for awhile...I literally am going to have twins any day now..if I don't go into labor they are inducing on Sunday!!! My first babies...eek!

Trace,

I had my first baby Keeley exactly 6 months ago from today and it was a wonderful experience not too scary. She is incredible. I can't imagine having twins! How exciting. Thank you for the info. My mom has an appointment with her ENT next Tuesday and I will be sure to have her ask him about the rinse.

Dani

So glad to hear the good news about your mom and I only hope its get better and better! You know, I feel bad that you're family was told that your mom had a certain amount of time left. The shock and depression ya'll must have experienced. My sister had stage 4 cancer of tonsill 2 yrears ago and today is doing great-although there were very rough spots along the way. The one thing I learned out of our experience with cancer is that the doctors know alot about cancer, but not enough. Your mom's 1st doctor did all he knew to do, luckliy there was another that knew more.