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

Catherine,

If I were in your shoes, I would insist on scans ASAP, if not sooner. This is not the time to sit on your hands. BE PUSHY! If this doc won't order scans for you, find one that will. A team approach to treatment is better anyway.

And no, don't worry about being obsessed about this cancer. You need to be more stubborn than it is if you're going to beat it and if you need further treatment, lemme tell ya, its a full time job!

Good luck to you.

- Margaret

With the limited info you have given I would guess that you would be Staged a 1 at this point assuming the Primary was the subject of the surgery and there are no nodes involved. This cancer IMO is at least 50% mental so if I were you I would continue your quest to get a QUALIFIED diagnoses and treatment recommendation. I got 5 opinions before I was satisfied that I could make a decision. Unfortunately no 2 cases are exact so it's hard to play Monday morning quarterback. Only qualified oncology physicians who see many similar patients each year would be who I would value their opinion(s).

I attended W&M's P/T law school while commuting from Richmond back in the day.

Six weeks after my first surgery I had a small bump (looked like a pimple) show up on the right underside of my tongue. I immediately went to my oncologist to have it looked at. She wondered wy I was there since my next appointment was only six weeks away and I told her this new bump worried me. She said it not cancerous and nothing to worry about.

The peace of mind was well worth the trip. Find a new oncologist that will be more proactive in your treatment. If for nothing other than peace of mind you need to be checked from top to bottom. I tend to beleive that doctors know best but I have found that sometimes the treatment plans become routine for them and they forget they should be treating the whole patient.

My advice is to find someone who will listen to you more even if you have to yell at them to get their attention. There is nothing wrong with getting angry with your doctor. Basically I view the process the same as hiring a plumber. If I dont like what I hear from one plumber I find another one who can get the job done when I want it done.

It is your life and you can be as pushy as you like.

Dear Catherine,
You live so close to many excellent cancer facilities, please go to a Comprehensive Cancer Center and proceed with a full exam and diagnosis with them. With the symptoms you have, you need a good workup, including some scans, and there is no need to continue with a less-experienced doctor for this. IF you have more problems turning up, you are going to want treatment from a larger center anyway, and if they do a full workup and find that you DO NOT have more cancer, then you'll have the confidence that you have really been throughly examined. I don't like the options your doctor gave you. There are other, better ones!

--Colleen

Catherine,
that does seem like a bit of a wait. Early stage cancers are often treated by surgical resection only. Radiation typically doesn't come into play until stage 2-4 and 2 is on the fence.

You've already had a biopsy - why the second biopsy?

Staging for OC is typically based on 2 factors (there may be others but this is based on the TMN system TXMXDNX (T= tumor size, M =metastesis or spread beyond original site and N = Nodal involvement) There is also a grading system for the tumor:

1. Tumor size (in centimeters) and
2. Lymph node involvement (yes or no)

Without knowing the particulars of your case (and I am not a doctor), you could very well be a T1M0N0 (which is as good as it gets):

A 2mm tumor is the smallest size that can be detected on any scanning modality. Since the area is healing from the biopsy a PET may yield false positives because of the increased uptake from the healing process. Problematic lymphnodes can be detected by palpation, MRI, CT ot PET scans. Usually it takes a while for lymph node involvement, as in a more advanced stage. I had no lymph node involvement and my tumor was a stage III/IV that they estimated had been there for over 2 years. So even large tumors may well be "well differentiated" - no spread into adjacent and different tissue types, in otherwords contained in a small area. So how differentiated your tumor actually is, is just as important as the staging (if not more important than staging). Poorly differentiated tumors tend to be more invasive and agressive.

I was Dx'd on Nov 22, 2002 and didn't start treatment until late January 2003. So some delays are typical. It can also be a little harder in December when key people take time off for the holidays.

What Brian gave you was a general rule and early detection is vital to improving outcome (particularly the intial diagnosis), however, your situation is a little different, you already had it detected, biopsied and, unless the doctors are totally incompetent (VERY unlikely since you are at a CCC), they must not feel it is a not a clear and present danger or they would be acting faster.

Oncology departments are on overload - it will shock you once you get into the system just how many people are being treated for cancer. They may have done a triage on you, determined that the outcome won't change with a minor delay in time.

Post Tx follow up visits are at 6-8 week intervals initially because the NCCN has determined that nothing will change radically enough in that time period to render it untreatable.

Anti-anxiety meds helped me a lot as well.

Take a deep breath. Enjoy your holidays as best you can.

Margaret, David, Bill, Colleen and Gary,

Thank you all for your kind replies and excellent suggestions. After a few days reflection, I have come to realize that I need to relax, reduce stress and try to get my mind-set focused. I am normally a very organized person, who works through everything using lists and notes. Since this diagnosis, I have not been able to concentrate in a logical way. I agree with you, David, that a lot of this is mental, and Gary, anti-anxiety meds may well be a needed aid for me to adequately cope. In fact I should have posted this topic in the �Coping Forum�!

Margaret and Bill, I agree with you that I need to receive satisfactory answers from the doctors as well as have the appropriate tests. I will try to be more persistent in my requests, as well as more specific. When I have my annual physical with my Primary Care Doc, I always type up any changes I have experienced since my last visit, as well as a list of requested tests, and a list of questions. I make two copies of this and hand one copy to him as he enters the room. He (jokingly) says I make it too easy for HIM, and I tell him I do this because it makes it easier for ME not to forget anything! I did not do this with the ENT; I was so scared that a didn�t even ask the handwritten questions I had for him. I will have two copies of my typed list ready next time (and maybe a tape recorder) and will go to the appointment prepared to do battle (at least be more aggressive)!! And Bill, I love your plumber analogy!

Colleen, I do need to feel confident that I have been thoroughly examined, and I also did not like the answers the ENT gave me. I have begun to look at options for a second opinion.

Gary, thank you for your clarifications re: the typical treatment of early stage cancers, the usefulness and limitations of the scanning tests, and your explanation of the usual timeline for testing and treatment. I feel that I am better informed, and better able comprehend the big picture.

David, we were at W&M 1969-73. Craig wrestled there, and also played rugby with the law school team. Our paths may have crossed?

Once again, you all have demonstrated what a caring community OCF is. I cannot express how valuable your advice has been for me!

Thank you kindly,
Catherine

Catherine, consider having someone else go with you, preferably someone who is used to dealing with doctors, like someone who has been a primary caregiver. They will not be dealing with the emotions that hit us victims as we take in new information!

Catherine - I like your idea about having a typed list and handing it to the doctor when they walk in. I have taken a written list for myself but then I chicken out and don't ask all the questions. Your way is much better. Great Idea.

I forgot to mention it, but when I was at my primary doc recently, I took in a list, he grabbed it and started right down it answering my questions. That worked well, except I forgot to put one thing on the list...Duhh!