Hi, Darrell. Hope you are faring well through this. I've been thinking about you. Amy

James,

"Everything seemed OK until Dec. 23, 2003 (I remember exactly when I first realized I could have a recurrence). I noticed a small "place near the bottom part of front of tongue and my wife noticed my breath was similar to that when I had my first SCC."

I too had noticed a very distinguishable and quite nasty breath smell before my husband was diagnosed and for a few weeks into treatment. The smell is now gone. I was wondering if that smell was related to the cancer myself.

Darrell,

Glad to hear you are doing well! Praying for continued miracles to drop in your path.

Ed

I also fear re-occurrance. I had small white patches that I FOUND MYSELF all during 2005. I went thru 3 surgeries at the Local Oral Surgeon's office for biopsies. Each time they came back calling it Leukoplakia, blah, blah..that could turn in to cancer. That alone was bad enough.

Finally the 4th time I saw a small white patch, I insisted on someone with more expertise. So I chose Sloan Kettering in Feb 2006. I had surgery, I recoverd (more or less) and went thru 2 checkups.

Now it is August, and I found some white patches a couple weeks ago, watched them, went to the dentist, and then made an appointment. Someone here said don't wait..let them diagnose. I agree, so I made the appointment (Thank you to whomever for that advice)

These lousy spots, they seem to come and go.

Am I crazy?? I look in my mouth, with fear, all the time.. praying no new thing will pop up. Meanwhile, I have an appt. 9/1/06 for Sloan Doctors to look at it. I had 2 good checkups..this will be #3..and it scares me, but this morning I look in, and its almost gone? I think I lost it?? Maybe it jumped out on to my toothbrush. I wish!!

Life is so busy, I have elder relatives I take care of, I don't have time to be sick.. I hate it and I hate the paranoia .

Thank God for this website. I feel so much better, I learn from each of you, and I pray for you all. I may be at the beginning of a battle, but I refuse to lose the war.

Nanci,

Keep following up with the white patches. Being dilligent will only keep you on the right side of progression. Try hard to relax between visits and they probably recommend follow up every 1-3 months depending on who you see. Stay with the experts (i.e. Sloan-Kettering) and remember it aint cancer till they can prove it. Have them educate you on Leukoplakia and which types are more aggressive and warrant watching closely.

Ed

Nanci --

My husband is in a similar situation -- his dentist noticed a small leukoplakia on his tongue in early May. The report for the initial biopsy, by an oral surgeon, indicated moderate dysplasia but warned of a possible "skip effect" and strongly urged a more thorough examination; a subsequent excisional biopsy by a local ENT showed SCC in situ and a bit superficially invasive. A followup PET scan had no areas of concern.

At that point, he began being seen by a Johns Hopkins CCC ENT and had his excisional biopsy slides re-read by the Hopkins CCC pathologists. So far he has not required additional treatment (knock on wood).

He has had two "everything's fine" checks at Hopkins and is being seen there every four to six weeks for the first six months. During the second six months, that will stretch out to every eight to 10 weeks, assuming everything stays good (another knock on wood).

The doctor noticed a small white dot during the first check, but he was not concerned and it was gone at the second visit. Both my husband and I know that oral cancer is pretty much all that these physicians see, so they recognize what could be a problem and what likely isn't. My husband is also checking his mouth himself to be on top of anything that might crop up.

As Brian wrote back when I first asked on the boards about leukoplakia (before we knew it was SCC): "Keep an eye on this from now until forever."

I wish you the best.

-- Leslie

Uptown, Leslie,

Thank you for your input. My checkup at Sloan is Friday, this week. I had my local dentist look at the new white spot, we waited 14 days, ( he waitted, I watched intently for 14 days) it was still there, so I pulled my Oct. appt. into September.

Someone here suggested Green Tea swishing. So now I brew a cup of tea, add a small portion of Splenda, and keep it in the refrigerator. When I go past, I open up, take a swig, swish and swallow this lovely brew.

Ever since, Guess what!!! ...the white spot has been getting smaller. I think, when I get to Sloan on Friday, it may be gone. So, maybe the anti-oxidents in the TEA are helping???

Well, what a surprise!!!! I know lots about Leukoplakia, God Bless the internet, and WEBMD and the Merck manual, and I guess you are right, WE WATCH FOREVER.

Thank you all.. for your support.

I would like to add that my hubby's recurrence was found on the first annual PET scan. No one has been able to determine "conclusively" that it is cancer...but highly suspicious. I wish they had done a PET scan right after he finished surgery and treatment so they could see the "new" landscape in his neck. I do not feel confident that the recurrence in his neck is not a false positive. A biopsy has not proven conclusive. He feels fine and looks fine. ?*&%$

TomM,

From everything I've seen on this site, I think it's quite typical NOT to have a PET scan soon after treatment -- there can be so much scarring (and other irregularities) in the treated area that doctors can't get a meaningful read and can too often get false positives, which is why they will wait awhile to do followup scans.

Cathy

My first post treatment PET/CT was at three months, with followups every 6 months. My ENT will do a visual/palpate exam tomorrow.