I had a biopsy done (left lateral tongue lesion)last week that came back as a moderately to poorly differentiated SCC (see, I'm already learning the lingo!). I saw an ocologist at Vanderbilt yesterday and they recommend a partial glossectomy; which I know is necessary, but also a neck dissection though they believe I am stage 1. I am undecided on the neck dissection and would love to hear the pros/cons. Also, how important with my type of diagnosis is it to get a 2nd opinion?
I find it interesting that so many of us are nonsmokers, light drinkers and fitness nuts - never expected this particular cancer.
Thanks, this forum is both scary & encouraging!
Sonia
Hi Sonia,
Sorry you have had to join us here but you couldn't have found a better place for support and information. I had the same diaganosis as you almost 1 year ago.
I had a partial glossectomy and neck dissection. To me the procedures were not all that bad. The neck dissection sounded worse than it actually was to me. While you will get differing opions on the neck dissection from memebers of this board, I found the peace of mind in knowing it had not spread outweighed the risks.
Almost a year out from Surgery in April 2010 the effects of the surgery are minimal. I still have a small amount of numbness in my neck, mainly around the incision site and my tongue is still a little numb. Other than that everyting is great.
I wish you all the best with your journey.
Tommy
Sonia, welcome to OCF. You will find lots of help and support here. It is very important to be treated at a large cancer facility where they treat hundreds of cases per year. Here are links to the top cancer centers and best hospitals. Best wishes.
http://www.oralcancerfoundation.org/resources/cancer_centers.htmhttp://health.usnews.com/best-hospitals
Thanks Tommy for your insight; glad to hear that it's not as bad as it sounds.
Sonia,
I had the same cancer as you. I had the surgery to remove the tumor and also a neck dissection. I agree with Tommy.
Seeing my cancer didn't spread to the lymph nodes my surgeon suggested the ND, but it was up to me. I asked him why he said, we'd rather be safe than sorry. In case any cancer cells have traveled to the lymph nodes and the scans didn't pick them up because of their size.
Yes, the ND sounds worse than it is. The only problem I have is the tightness, but I massage it and it's fine. As far as my tongue if I eat certain foods it feels like it's swollen, but I know it's not my guess it's the sensation, especially milk products.
As far as my speech I still slur my "S", I was told I talk too fast, slow down.
Hope all goes well for you, best wishes,
Connie
Totally agree ! Even though I had a clear CT... And MRI - my dr. Said ND and hemiglossectory - I was happy to have it done... And they found one lymph node involve despited 2 clear scans. Time between original diagnosis and surgery 6 weeks! The MRI and my surgery were 3-4 weeks apart. The node was there before the MRI as I could palpate it before hand And my original path was well differentiated (told now it is well to moderate). All in all I'm glad I had the ND - you never know... And definitely better safe than sorry. I'm 6 weeks post op yesterday and my neck is numb, but far less stiff than it was - I have probably 80 percent range of motion back in both my arm/shoulder and neck. Tongue is still a little swollen but I'm eating well, and t,d, and s are my trouble lettlers but once the swelling goes away it should improve.
It's not an easy surgery but a lot of people here have gone through it. My diagnosis was similar to yours...
Sorry you have to be here but its a great support network.
Take care and good luck with whatever you decide.
Sonia, welcome. Sorry you're here, but as Tommy and Christine have said, you've come to the right place for information and support. I'd say that it never hurts to have a second opinion. That said, a neck dissection, though surely major surgery, is normally something that you get through very well (I had some problems, but that was unusual so I'm told).
There's residual tenderness and numbness that gets better with time. We all speak of the new normal here and that's a fact.
I find it interesting to read about people who have only surgery with no follow-up chemo or RT. My bout was 2 years ago, and I was told in no uncertain terms that I needed radiation to kill any rogue cells that the RND/lymph node removal might have missed. Perhaps your being stage 1 obviates the need for that. But it wouldn't hurt to ask, especially if you do decide on a 2nd opinion.
Should Brian (the leader of this forum) or someone else more knowledgeable weigh in they'll perhaps be better able to clarify.
Best of luck to you. We're all in your corner!
David 2
Thanks everyone for your insight and encouragement, I have been fighting the past 3 months to get a doctor to confirm this diagnosis and now that I have it; am progressing to the next level, which is scared! I knew something was wrong, but didn't really prepare myself for the next thing. As someone who internalizes issues, this forum is a blessing.
Thanks to all,
Sonia
Welcome to the OCF family Sonia,
As you can see by my signature I have had the surgery 4 1/2 years ago and all in all am doing OK.
David I note that your signature says N1 so maybe that is why the RT.
The 2nd opinion sounds like good advice Sonia and you would not be normal if you were not scared.....we all were/are
Keep coming here often for support and help as you go through this journey.
You are not alone as we will be there for you whenever you need us.
Gabriele
Hi Sonia
Wishing you all the best! You have come to the best place for advice, encouragement and support. This is truly a place where you can vent out any fears, anxieties and worries because everyone here understands what you are going through. And a ND is not as scary as it sounds..I have had two in 5 months!! Apart from tighness and stiffness, it really isn't all that bad.
Take care
Liza
I found the neck dissection not bad. It's the affects of Chemo and Rads that create the problems in the neck and mouth. Or so it was and is for me. Good luck with it all and I pray you buzz thru everything you need.
Sounds like our diagnosis was similar. I had well differentiate SCC on left posterolateral tongue, no node involvement showed on scans. I had surgery just under 3 weeks ago, partial glossectomy and ND on left side. Post surgery showed that no nodes were involved and despite that I'm glad the ND was done as for me chances of it having spread were high enough and I would have been worrying a lot about what if. So far I would say the worst part was being in the hospital as I have a hard time with taking it easy. Now I'm just trying to get used to the numbness.
The day after surgery I was walking around my floor of the hospital, albeit hunchbacked a bit as my shoulders/neck were very stiff. I was in the hospital 5 days and that was mostly because they were waiting for the neck drains to be able to come out.
When I got home I couldn't move my head around much but I started to stretch it out. My shoulder/neck are still stiff on that side (under/between shoulder blade) and I don't have full turning range of head but it's doesn't keep me from doing what I want. I still have some swelling in my chin so I feel as that goes away and with more stretching/massage I should be able to get most of my range of motion back.
I am not able to sit still for long so after making sure it was ok at about 1.5 weeks out I was able to go hiking and mountain biking. Then 2 weeks out I was able to run and since then have been on some trail runs with no ill effects. My speech is practically normal and I am back to eating most things just takes a lot longer. So in the end not all that bad.
I am sorry to read of your situation but glad you found this forum. I was stage 3 and had a whole bunch of more issues, so I had to have neck dissection as one of my lymph nodes lit up on scans, and came back positive for cancer.
ND isn't bad, and lucky for you they caught it really early, so you shouldn't need to worry about rad or chemo. Rad was far worse for me then the surgery ever was.
I wonder if they tested for HPV on ur biopsy though? If they didn't mention it, maybe it would be good to ask them. Cuz if you don't smoke, lightly drank, unless ur family members of your past have had oral cancer, or skin cancer, it could possibly be caused by HPV, and if it is caused by HPV, less likely to come back, but not impossible. Just a thought.
I know how scared you must be, but once you go through surgery, you will be happy you did and will adjust to the changes and have a whole new appreciation for many things.
I will keep you in my thoughts!!