Hi there,
I'm monica from Melbourne, Australia. I'm 33 years old, doing a PhD in sociology and have 3 children. During a rountine dental examination 4 months ago a painless white lesion was discovered on the bottom of my tongue. Biopsy showed it to be cell dysplasia but further pathology tests of the lesion after it was surgically removed showed very early stages of carcinoma. Everyone keeps saying how lucky I am to have got it this early but I'm not feeling that lucky A MRI test all found suspicious lymph nodes (which I've posted about in another section of the forum) so it looks like I'll be having more surgery.
I've come here to find support, advice and shared experiences...

Seek other opinions before you let them do a Neck Dissection. It doesn't appear that you have even been confirmed with cancer and dysplasia doesn't always end up as cancer so proceed with caution.

Hi Monica -

My husband's situation was similar -- leukoplakia (the white patch) initially identified as moderate dysplasia but reclassified as SCC in situ once the whole thing was removed in outpatient surgery. The ENT who removed the leukoplakia (not a cancer specialist, since my husband hadn't yet been diagnosed with cancer) was also talking about a possible neck dissection.

I encouraged my husband to seek a second opinion at a top-ranked cancer center about an hour away, and the doctor there (who sees only H&N cancers) said surgery was not necessary. My husband did have a clear PET scan, so there was no suspicion of nodal involvement. He has been followed regularly at the cancer center (supplemented with regular VELscopes by his dentist) and all is well -- knock on wood -- after 4+ years.

I don't know how the Australian medical system works, but if there is a cancer center you can go to for a second opinion, then I suggest you do so.

Are you a private or public patient Monica? Make sure your ENT specialises in cancer and second opinion is crucial if not third opinion.

Minh

Monica, I second, third and fourth everything the others have written. You say the nodes were suspicious. Need to definitely confirm that with a biopsy. You mention also another surgery which we're assuming due to the nodes is a neck dissection. That's a big step and not a very pleasant experience.... so do get that second opinion and the biopsy if you're at all able to.

Hang in there!

David 2

Hello and welcome to OCF from another Aussie.
You will find that this is the best place to seek information and advice. I would suggest that you look up another user here from Melbourne Karen Rose. While Karen's situation is not the same as yours she may be able to help with Specialists and Hospitals in Melb. Victoria. Look under User List (3rd tab at the top)and send a PM (personal message). I will email Karen now with a link to your post.
If you have any more questions ask away. You already have some good advice and I wish you all the very best.
Cheers
Gabriele

thanks Gabe and everyone else. In response to David- the dysplasia was upgraded to cancer following excision and SCC 'foci' were discovered, so as I said very early. An MRI and cat scan showed necrosis in two lymph nodes but fine needle aspiration biopsy was negative. I haven't been offered a PET scan but from my reading here on the forum, I am going to ask for a PET scan before any decision is made re dissection. Does lymph node necrosis always mean cancer?

I am being treated in the public system at a major hospital in a specialist head/neck cancer clinic so there are several docs in a team mananging my treatment. The don't all agree that I should have the lymph nodes removed but they all agree I should have further surgery on my tongue as there a more white bits further back that were not taken out the first time.

Necrosis means dead cells and that can be from the cancer. My nodes showed necrosis and I will never forget when my ENT, AKA Dr Death, read that he stopped and looked at me and said "I didn't want to read that." After I asked him why I quickly learned that unless I REALLY wanted the no frills blunt truth I shouldn't ever ask him another question.

Now remember I'm a CPA not a Dr or a PHD but my experience with HPV- SCC which I would assume you have, it is more aggressive perhaps much more aggressive and if there was ever a time to be aggressive in the treatment, it's with your cancer. That said I still don't know if I would agree to a ND. Perhaps taking the ones ID'd with SCC but not a full ND. JMO

Hi Monica. I'm not a cancer survivor but my aunt (more like a sister) is. Her oral cancer had not spread to the lymph nodes but her surgeon told her this is nothing to play around with and recommended a neck dissection on the one side with the cancer. She did that and I'm very glad she did. I surely would not want to have seen her need more surgery after her radiation.

The worst side effects Teresa has had from the neck dissection is stiff muscles in her neck which she exercises daily. The rads were much worse than the ND.

Just wanted to provide you with a pro ND view.

Dodie

I'm still waiting to find out if I tested positive for HPV 16. I'm an ex smoker too (quit a year before diagnosis). David I like your signature (re the bike riding)! I play roller derby and I plan on being back on skates as soon as possible following treatment. Which brings me to another question- what is recovery time like following ND? THink I'll go and have a bit of a poke around previous posts/threads....

I'm having the partial neck dissection next Tuesday. Basically the medical team decided that they couldn't risk leaving the lymph nodes in as they had definite signs of necrosis. I'm also having a centimetre more taken off my tongue (sorry don't know what that is in inches for you US folks!).
So can someone tell me realistically how long I'll be out of action for following surgery? i.e. when can I go back to sports activities?? I have healed pretty well from surgery in the past (for other non related issues). I'm fit and otherwise healthy.

are there photos of scars on this forum anywhere??

Also, what are the indications for radiotherapy?
thanks in advance

Moni,

As a new member, please take the time to fill out your signature so the rest of us know what you've been diagnosed with, and what procedures you've had done. It just helps us help you.

Everyone is going to be different in recovery, I know that's kind of a cop out answer but it's true. If you haven't had radiation then it'll be shorter. I've had a ND as well as a follow up surgery that had to reopen the original incision, so my scar is pretty impressive. It looks like I've had my throat cut in a a knife fight. As a guy, I think it's pretty cool and gives me different stories to tell when asked what happened to me. I've seen others on women that were barely noticeable.

Eric

Monica,

Are they suggesting rad/chemo following the surgery? Nodal involvement takes you to a different Stage, probably a III and most likely concurrent chemo/radiation.

How big was the Primary in the tongue?

How many nodes showed necrosis?

How did they determine the nodal necrosis?

[quote=monicacc]Also, what are the indications for radiotherapy? [/quote]
The main part of the OCF site contains a wealth of information, including the National Comprehensive Cancer Network's annual guidelines for head and neck cancer treatment. These were developed by the NCCN, an alliance of 21 leading cancer centers in the U.S., and represent the latest thinking in the U.S. on cancer treatment. The guidelines cover many different types of oral cancers, so make sure you are looking at the right page (table of contents is on p. 3 of the guidelines).

We are all different and your state of mind will help in the decision of long long you will be slowed down. I just had an aortic abdominal anneurysm repaired. Besides having a half purple body , a couple of transfusions and a few very touchy spots, I am back to my usual routine almost. I'm not tough but determined. Eric. Knife fight without your knife huh? I love how you state that. LOL You always give me a smile when I need one. Thanks

Monica, welcome to OCF. Wishing you the best of luck with yoru upcoming surgery.

Monica, my thoughts are with you. As others have said, recoup time from surgery is variable. As for scars - for me they're no big thing, one vertical and one horizontal, although the skin is tighter on that side so I'm a bit assymetrical! But surgeons today are great at minimizing scarring.

Please keep us posted.
David2

Hi Monica,
I knew your operation was coming up tomorrow (Tuesday our time)
and just wanted to wish you all the very best.
I also posted this on your other thread (under Medications, Treatment, Procedures) as you have 2 current at the moment.
Hope all goes well and I will be looking for your next post.
Gabriele

I had a right side neck dissection, and I have pictures posted on my facebook. I am 7 months out from surgery and 4 months out from radiation. After surgery for me, i think i was eating ok and what not maybe 2 months after, but they took the whole right side of my tongue, after radiation i think it was a month or 2 again and i was eating well again. But it all depends on the person and the surgery, no 2 are the same, well as for time frames!

I wish you luck and hope for smooth quick recovery and hope you don't have to have radiation, but if you do, it will just help you be more confident that this won't happen again!!

I had a neck dissection at the same time as my glossectomy. 7 months on, the scar is looking very faded and the lingering side effects are a region of numbness on my cheek and ear-lobe. Initally this was quite disturbing and uncomfortable at night since I usually slept on my side with that ear downwards. But it has improved steadily and now I have no discomfort really, just a strange sensation when I shave the rather sparse beard (following radiotherapy). The neck is stiff a little stiff and slightly rigid to touch but I think quite a lot of that is also the radiotherapy not just the neck dissection. As I'm sure they have told you there are risks of complications, particularly damage to the accessory nerve which can result in restricted movement of the shoulder. I had some physio which cured my initial problems and my shoulder is as good as before. Hope this makes you feel a little easier about the prospect.
Martin

I'm back from 8 days in hospital! I had a little "fillet" (as the surgeon called it ) excised from my tongue and had 3 lymph nodes and a benign tumor removed from a saliva gland. PAthology came back as ALL GOOD- no further evidence of SCC was found anywhere, including the tongue. I am SO relieved
We had no idea the benign tumor was there, so that was a surprise but the surgeons think that that's probably what caused the enlarged lymph nodes rather than the SCC on tongue. Any thoughts on this?
I'm on to a diet of puree already (started liquid diet 4 days post surgery. Pain is not to bad (but gee the "hill billy heroin" helps :D). I found the pain in my throat from the nasal gastric tube was worse than the tongue?? My neck has been relativley painless but uncomfortable to sleep on. Still a bit of swelling and stiffness. The only nerve damage I can discern at the moment is numbness in my neck and head that Martin mentioned.
was considering physio for neck stiffness- has anyone had success? Scar doesnt look so bad either...but MUCH bigger than what I expected.
Gee 8 days on those tubes really sucked though!
Thanks for all your advice and support

Great news!!!!!!

Congrats.

Physical therapy for the neck (and shoulder) is a good idea. It worked wonders for me.

Don't be surprised if the numbness remains in your neck. Mine did shrink to a smaller area, but it still remains 5 1/2 years later. It's no big deal. Nobody can see my scar unless I point it out to them.

Glad to see you are out of hospital and recovering Monica.
Great news that the the results of the pathology were ALL GOOD!
Do not recall ever seeing a reference to a �fillet� before. Was it mignon
I suspect some of what you are experiencing now is part of the normal recovery from the surgery.
Hope with each passing day you feel better

Great news Monica. Glad to hear all went well.