Many of you have written about your distressing journey to diagnosis and treatment. Mine was no different: possible fungus, possible SCC, SCC and severe dysplasia with a strong suspicion of SCC. A negative CT scan and normal panorex xray left me more confused and deeper in denial.
But every diagnosis also included a recommendation to remove the lesion so, my ENT surgeon removed the equivalent of 4 teeth and a slice of my jaw. He discovered cancer between the roots of the affected tooth ... not in the area of the original biopsies. As he said, "It didn't present itself as a typical oral cancer."
Tell me about it!
It was small, and he said he got it early, along with 1 cm of clar margins. The bone was clear, too. I don't need treatment, other than 3-month followups with CT scans & panorex xrays. I pointed out that the original scan & panorex were normal. He said these were the only tools he had (in addition to visual examinations.) If I were paranoid I could have lymph nodes and the rest of my jaw removed. I declined. I realize there are no guarantees.
What started as a bump near a molar on the buccal side of my gum in Feb. has deeply affected me, but my surgery and recovery has been easy. My surgeon said I would have a numb lip, but that didn't happen. I even was MC at a convention for young magicians over Fourth of July weekend, where I performed several ventriloquism routines. The surgery hasn't affected my speaking.
I am grateful that each doctor was aggressive in getting me to the next quickly, while I was denying anything was wrong other than this "thing" on my gum - until I got the diagnosis, and then I became a basket case. But look at me - and look at you! No one wants to belong to this club, but I don't think I could have made this journey without you. I'm glad I found you.

Marlene

Marlene,
Congratulations on your good fortune in finding this early. Mine was also found at the root of a tooth in the bone. It is amazing how effective early detection can be and frightening to realize that we often tend to ignore or block out symptoms that something is not as it should be and that many medical professionals overlook the obvious or misdiagnose. Thanks to Brian and all who participate in this forum and in the Oral Cancer Foundation as medical advisors.

Marlene,

Happy to hear that you got to do the convention and that you are feeling so great. We do have a lot to be thankful for and each day is a blessing.

Keep dropping by to let us know how you are doing.

Jerry

Marlene, I was told I had no need of chemo or radiation because my margins were 1.5 mm... don't believe it at all. within 4 weeks or less, either the cancer came back or it never was cured. Ended up losing my teeth, then rads and chemo combo for 4 weeks, then radiation seed implants in my tongue. That could have been prevented if I would have listened to the Local RO instead of the guy at the big well known place. I had a BDay the 21st of Feb and implants the 29th of Feb,, I remember nothing about my BDay or up until the 6th of March. I was put out of it for the pain, but they had trouble getting me to come around and wake up. Was heading for the resthome to recoop when I came to and was discharged 2 days later. Dr said I was the miracle patient. LOL Got you in the prayers.

Hi, Jim -
Yours is the story and diagnosis none of us want to hear or have. We and our doctors make choices based on the facts as we know it. But this is the problem with statistics: You may have a 10% of being in am extraordinary category, but when it happens to you, it's 100%. Still, it's not a gamble, nor can we second guess our choices. This is a sneaky beast.
I'm so sorry about your additional ordeal, but I'm glad you became the "miracle patient."
I will pray for your continued good health, as I do mine.

Marlene

Hi, Malka -
The oral surgeon said I had soft tissue between the root - where bone should be. The in-hospital oral surgical team said that the SCC sat on top of the bone. What mattered was clear margins.
This week, I saw my dentist for an unrelated issue. He told me about a patient that had a white patch on the gum biopsied 2 years ago. It came back negative, but the patch is still there, and it seems to have gotten larger. He ordered another biopsy for this patient because he knew of my experience.
Vigilance plays an important role in early detection - but people and even tests can be imperfect. The secret is to keep on keeping on and be grateful for every day.
Good luck!

Marlene

Those patches are worth checking. In my husband's case, his dentist noticed a white patch on his tongue that hadn't been there when he had his previous checkup. It was biopsied almost immediately by an oral surgeon -- that report (by a lab that does only oral pathology) showed moderate dysplasia, but warned of a "skip effect," meaning that cancer cells could be hiding in areas not caught up in the biopsy.

A month later an excisional biopsy of the whole thing by an ENT showed SCC in situ, with a tiny bit superficially invasive. After SCC was found he was seen by an OC specialist at Johns Hopkins (who had access to all the previous doctor/lab reports, and we sent slides to the Hopkins lab for confirmation) and was told no further treatment was required at that time.

He's now two years out and is checked regularly by the ENT at Hopkins, the local ENT who did the second biopsy and his dentist, who uses a VELScope. All clear so far.

-- Leslie