I'm 53 and have never smoked. Enjoyed an occasional glass of wine with dinner until 2006 when I had my first biopsy of leukoplakia on lateral right tongue. Not all leukoplakia removed and the following year the smaller bit left behind had enlarged. Neither biopsy was malignant. Began to get occasional mouth ulcers on the right side of mouth, under tongue and on floor on right side. June 2010 had a large outbreak. Dental surgeon gave me a salve which calmed things down but by September I developed a small lesion floor of mouth at site of one of the ulcers. This was an at least moderately invasive SCC. The margins were not clear with carcinma in situ extending beyond several. PET scan showed no metastasis. Second excision by ENT in October 2010. Margins clear.
Desiring to be proactive my ENT referred me to a head/neck oncologist at MUSC in Charleston. They are now recommending a 3rd excision. I was feeling rather fortunate to have come away with an early diagnosis, minimal speech or eating impairment and am now feeling a little scared.
I know many of you have had a much harder time and I apologize for complaining

[quote=cbhh]Second excision by ENT in October 2010. Margins clear.
Desiring to be proactive my ENT referred me to a head/neck oncologist at MUSC in Charleston. They are now recommending a 3rd excision. I was feeling rather fortunate to have come away with an early diagnosis, minimal speech or eating impairment and am now feeling a little scared.
I know many of you have had a much harder time and I apologize for complaining [/quote]

Catherine ;),

Welcome to the OCF family.

I know the �feeling rather fortunate to have come away with an early diagnosis.�

And the, I �am now feeling a little scared�; Translation, �I AM TERRIFIED!�

And, �I apologize for complaining�: HERE�. Not Necessary, No How, No Way!

I see that MUSC is a Comprehensive Cancer Center. I would suggest a second opinion from another CCC NCI Link . An independent evaluation of your specific situation from another set of experts might help. I got opinions from two CCCs: VCU and Johns Hopkins.

OCF is the place to ask questions. I admire your desire to be proactive and informed!

LeslieB is a poster here whose husband was diagnosed with "SCC in Situ." She will probably check in on this thread with her expert knowledge!

Catherine (cbhh) --
Yes, my husband did get a diagnosis of SCC in situ with a small bit superficially invasive.

His dentist noticed a leukoplakia that had appeared between checkups and referred him to an oral surgeon for a biopsy. That came back showing moderate dysplasia, though the lab report noted a possible "skip effect" (meaning that cancer could be lurking in areas that were not taken in the biopsy). Because cancer had not been definitively diagnosed, he was referred to a local ENT (who had been chief ENT resident at the Mayo Clinic) for an excisional biopsy to remove the whole thing.

Once the pathology report for that biopsy came back showing cancer, he started being seen by an ENT cancer specialist at Johns Hopkins, about an hour away. That doctor said no further treatment was needed at that time, but he did keep a very close eye on my husband for the first couple of years. Husband has now reached the point where the doc told him last February that he'd see him in a year. His dentist is very proactive in terms of oral cancer screening, and he does get a VELscope twice a year when he goes for cleanings.

He was very fortunate that the margins were good on the excisional biopsy. I'd second what Catherine (RPCV) said -- if you can get to a top-ranked CCC for a second opinion (apart from MUSC), that might help clarify things. In the US News rankings, Hopkins is #1 for ENT and #4 for cancer, and the doctors there see this every day. Seeing doctors who are very familiar with this disease is critical.

No nead to apologise. Any type of cancer diagnosis is scary, I do not care how small it is. Welcome to the group.

What Angelia said.

David2

Yes, welcome to the site. No need to apologize. This is a great site. I will put you in my prayers.

Thanks everyone! Will look into second opinion from another CCC. I was referred to the Cancer Center of the Carolina's by my oral surgeon who performed initial biopsy. They ordered the PET aned CT scans and referred me to the ENT who performed the second excision. Wishing to be proactive (not necessarily meaning wanting more surgery) I asked my ENT if he knew of any studies that were ongoing and of interest. He contacted Dr. Bruce Neville, an oral pathologist at MUSC. Dr. Neville and Dr. Day cowrote a paper, "Oral Cancer and Precancerous Lesions" which was published in CA-A Cancer Journal for Clinicians in July/Aug 2002. Dr. Day is suggesting I need more surgery based on path results from 2nd excision. They are also suggesting herbatox (sp?) as a possible substitute for surgery. I go for a more detailed consult on Jan. 3, 2011.

Does anyone here have any information or experience with herbatox?

Thanks again for all your uplifting words.
Merry Christmas!!

Don't ever appologize in this forum unless you deliberatly hurt someones feelings. We are all here, I would bet and learn a lot from hearing how others feel and what they go thru. I notice you never said you were biopsied or treated at a CCC. It was probably done for you and I was just too nosey reading your post. Keep on the Drs as it is your body and post everything here for us so we can follow what is happening with you. You sure are in a lot of prayers and thoughts. Good luck.

Catherine,
My cancer was in the soft palet at the back of the roof of the mouth and was minimally invasive. I also had a big area around that that was in situ. Unfortunately surgery was a last option for me as a large hole in the soft palet leaves a less then desirable quality of life so I went with a full round of radiation. I was spared the chemo so I fared better than most here.
I�m doing great now and life is good. I think the fact that they caught this early on really made the road for me much less difficult and the long term prognosis is always better when the cancer is caught at stage 1 or so.
I�m glad you got this early and hope you can avoid the radiation .

Catherine,

Our hardships and struggles are all relative. Our experiences shouldn't diminish what you are going through, but should give you hope as we are examples that it's possible to beat this disease and live a fantastic life afterwards.

Welcome to OCF my dear, we are here to help, support and listen.

Eric