Hi Folks!

I hope everyone had a Great Turkey Day! Craig (my husband of 36 years and high-school sweetheart of 40 years) and I spent the day in Newport News, VA with our parents (my mom, his mom and dad) and his brother�s family. In 2008, we helped our octogenarian parents sell their two houses and move into two independent living apartments in a �continuing-care-retirement community�. We celebrated Thanksgiving in the dining room at the community. We started the process of their �big moves� a year ago, and finished with the �settling in� last June. I am so glad my OC tumor did not appear until August!

Thank you all for your help with my questions in my introductory post. You definitely got me headed in the right direction.

I am still very concerned though about the delay in the staging process. Please bear with me as I repeat what has happened up to now (presented in my introductory posts):

�I was diagnosed with SCC on the floor of the mouth 10/03. An oral surgeon preformed:

�a biopsy of a midline floor of the mouth lesion. The lesion was initially approximately 2mm in diameter, gray, raised, nonpainful, approximately 1 month duration, at the base of the anterior ventral tongue, and involving the lingual frenum. An excisional biopsy was accomplished on 23 September 2008 and submitted for histopathologic exam to Medical College of Virginia. The diagnosis of superficially invasive Squamous Cell Carcinoma was returned. Surgical margins of the examined sections were reported to be free of tumor.�

I have been told, based on the evidence so far, that this cancerous tumor was caught very early. That idea is presented as good news, but until staging is done, the true extent of the cancer is still unknown.

I had my first appointment with the ENT at MCV (a CCC) on 10/23 (the earliest appointment I could get). He examined my mouth, looked at my esophagus with a mirror, and felt for nodes along my jaw line. He also looked in my ears and nose. He asked about symptoms like pain, swelling, hoarseness, change in voice, acid reflux and swallowing problems (none then). He said I had erythroplakia on the floor of my mouth. The only evidence of the 2mm tumor that was removed a month prior was some scarring from the sutures.

He told me to stop all alcohol usage. [I no longer drink alcoholic beverages.]

He said I had two options:

Come back in six weeks for reevaluation. OR

Undergo an excision surgery on the floor of the mouth involving an undetermined amount of tissue and a possible graft. I wonder if I should have asked about other biopsy options that would not be as invasive. It was clear he favored the non-surgical option.

I was expecting a cancer staging process with additional tests to start with this first appointment.�

(END OF OLD INFO-BEGINNING OF NEW)

I have an appointment with this ENT on 12/18 (eight weeks, not six). In the interim, my voice has exhibited some hoarseness, and I have to clear my throat more often. I have some discomfort at my right jaw area below the ear (could be grinding teeth-stress?). I have called the doctor to see if I can get an earlier appointment but have had no luck. Despite several phone calls, I have not been able to speak with him directly, he relays info through nurses who return my calls.

I mentioned Craig (my husband) for a reason. We grew up together. We lived less than a block apart, started dating our senior year in high school, got married before our senior year at W&M, went into the Peace Corps (in then underdeveloped South Korea-TB control jobs), backpacked the long way back to the States for 7 and � months (sleeping many nights in a pup tent) through Southeast Asia and Europe, and both got federal government jobs upon returning home. We decided early in our marriage that we did not want children; a non-mainstream life choice we have never regretted. He always sees the glass as half-full while I tend toward the half-empty. Normally we compliment each other in this respect. There is nothing we cannot discuss, but we don�t always agree in the end. We are true soul mates, and he will be an excellent caregiver.

Craig does not share my concern that there will be at least a three month delay from diagnosis to the start of staging. He thinks that the original excision of the small tumor will be all the treatment needed unless another tumor or affected lymph node is discovered in one of my future (for the rest of my life) visits with the ENT. To him, this is the advantage of early diagnosis.

I don�t agree. I quote Brian here from his article on �Early Discovery� (http://www.oralcancerfoundation.org/about/pdf/Editorial_Hill_07.pdf):

�� early SCCs, which make up about 85% of all oral cancers, are highly vulnerable to existing treatment modalities when found and addressed as early stage disease. Survival rates in the 80% to 90% range accompany early stage detection.�

The way I interpret this is that the �existing treatment modalities� involve surgery, radiation and chemotherapy; separately or in combination. The advantage to being diagnosed and treated early is that the cancer has less time to spread, and hence the better survival rate. Craig thinks I can avoid treatment now. I feel that additional tests are needed (PET/CT, MRI, etc.) ASAP. Only after staging can treatment options be accessed, with the involvement of a team (RO, MO, etc.). Right now, how do I know if the excised tumor was the primary tumor or if there is lymph node involvement? As Brian said in his article, �Delay is deadly.�

I don�t know what to do. It seems that I will not see my MCV ENT before 12/18 and I am having difficulty communicating with him. The oral surgeon who gave me the diagnosis on 10/03 was ready to make an appointment for me with an ENT (not associated with a CCC) which he felt would have occurred in only a few days. Should I call him and ask for him to arrange this in the hope that this ENT would order the tests and do the staging? Would this qualify as a second opinion even though I don�t yet have a first opinion? I have no idea what my insurance coverage (FEPBlue) requires in this area, but I will find out.

Neither Craig nor I are pushy people. He said last night that I am obsessed with this cancer. Yes, I AM OBSESSED! This is my Life! I feel I have to be more aggressive than the cancer to beat it. I am just not sure how�.

Well, if you stuck with this tirade this long, I greatly appreciate it. I have read so many stories at this site to know how truly fortunate I am. I really don�t want to blow this! Please help me if you can.

Peace and Love,
Catherine