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....