Hi Folks,

My name is Catherine. Thank you for this wonderful site!

I am a former smoker. I live in rural Essex County, VA, 80 miles from Newport News. VA and 45 miles from Richmond, VA.

I was diagnosed with SCC on the floor of the mouth last Friday (10/03) in Newport News, the location of my dentist. I was referred to an oral surgeon there who 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.�

The staging has not taken place. I live in the country and I am having difficulty finding an ENT in the Richmond area. My family doctor is contacting the ENT department at MCV, but he seems to have no specific knowledge of any one doctor to recommend. I am also trying to find an ENT in Newport News for possible treatment there. If anyone can share their treatment experiences with me for these two cities, I would be very grateful. Are there any websites available that give information about ENTs in VA and their experience with SCC? Private messages welcome!

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. Has anyone had success with a surgery-only treatment (no radiation) with a tumor similar to mine (assuming no additional cancerous involvement)? Or, is radiation always used as a follow-up?

Like many of you, I am sure, while at the beginning of this process, I feel lost. Any information you can provide as to what to expect would be gratefully appreciated. I hope I have found a new extended family!

Peace,
Catherine

Hi Catherine -
Even tho my husband's oral cancers were never on his tongue, but on gums and cheek, he was always diagnosed as either Stage 1 or "in situ" when one was on his lip, because of the same diagnosis that you had, which was "superficially invasive", and clear margins (also, "well differentiated"). Like yours, his were also caught early so in each case, it was decided no radiation or chemo. He never smoked, but his seem to originate with the lichen planus or leukoplakia he has had for years. A few months ago, he had laser treatment quite extensively inside his mouth to attempt to rid him of most of the lichen planus/leukoplakia. He just had a regular check-up today, in fact, and was given a great report. Hope this information helps you - if you have any questions, please feel free to message us. Good luck and keep us in the OCF forum informed. Warmly, JaneP

Catherine --

Here are some links to head and neck cancer programs in Virginia and nearby:

-- Virginia Commonwealth University in Richmond
-- University of Virginia in Charlottesville
-- Eastern Virginia Medical School in Norfolk

In Washington: Georgetown University's Lombardi Cancer Center (no specific link to head/neck cancer program, but OCF'er Charm2017 was treated there and could provide info)
In Baltimore: Johns Hopkins University's Sidney Kimmel Cancer Center

These are all comprehensive cancer centers, meaning that each case goes before a team of doctors from a variety of specialties to come up with a treatment plan. You want people working together to treat this and not be left in the position of finding each specialist you may need on your own.

There are several people here who had only surgery, following by close monitoring. Once you know your staging (it does sound early) you can check the National Comprehensive Cancer Network's protocols for the latest treatment recommendations. As you can see from my signature, my husband's cancer was largely in situ, with a tiny bit superficially invasive. His was all removed in the excisional biopsy, and he has been checked regularly by the local ENT in Northern Virginia who did that biopsy as well as by an oral cancer specialist at Hopkins -- no further treatment necessary (knock on wood).

If you are interested in physicians in Richmond, look for postings by RichmondGirl -- perhaps she might be able to help you. I am assuming she was treated there but do not know that for a fact -- you could always PM or e-mail her to find out.

You've found a great place to help you through all this. Welcome.

(An aside to JaneP: That's great news about your husband's latest checkup!)

Catherine,
Welcome, (I really wish I didn't have to say that to you.)
I am glad however, given your recent diagnosis and circumstances that you found this site it will certainly become a family for you and a great source of advice, information and compassion.
Staging can be difficult to understand and since evry cancer and every individuals reaction to cancer is different and unique it may or may not be helpful in every case. As a general rule it allows the doctors to determine how agressive the cancer is and how far it has progressed and the potential for future spread. Here is a link from this site that explains the basics of cancer staging. Brian Hill, this sites founder, has done a great job with explanations of many issues concerning OC and I encourage you to read them. Brian will also jump in and offer up anything he feels needs clarification or an update. He is by far the most up to date, knowledgeable and approachable person I have ever come into contact with on this subject and I have a great amount of respect for his continued efforts in maintaining this site and his neverending work to push Oral Cancer to the forefront as a major issue affecting our communities.
http://www.oralcancerfoundation.org/facts/stages_cancer.htm
I myself have not had OC but, being a dentist feel that this was the best place that I could help out and offer advice.
I am sure someone who has had a similar experience will be quick to provide you with some personal experience and help you along.
If you ever have any question that you feel I can answer please feel free to contact me either on the forumn by PM or via my e-mail address in my profile. I'll certainly do my best to answer your questions and help you along.
Keep a positive attitude and look after yourself.
My thoughts and prayers are with you.
Cheers,
Mike

JaneP,

Thanks for you kind words and information. I am exited by your husband's story and wish you both continued success!

Thanks for your support!
Catherine

I know that this has been partially answered above, but I wish to restate it is not as important to have one exceptional doctor from some discipline, but to be with a TEAM of doctors from different disciplines at a high quality comprehensive cancer center. That is where you will end up with the best ideas and the best treatment plans.

Leslie,

Thanks for the links! I have been to the VCU (Massey Cancer Center) page, but somehow missed the "Head and Neck Surgery" page you referenced. This is a good start for phone calls tomorrow.

I did see "RichmondGirl" and looked at her posts. I tried to PM her, but her message box was full and I did not see an email address for her. Hope she is doing well, if anyone is able to contact her, please ask her to contact me.

My best to you and your husband and thanks so much!
Catherine

Mike,

Thank you for your reply. I appreciate your encouragement. I have read Brian's page on staging and found it very informative. I guess when I find out my own staging results I will be better able to evaluate my own situation.

Kudos to you and Brian for your support!
Catherine

Brian,

I read your story last night from a link on one of the forum posts. Thank you for you efforts in helping the rest of us through a confusing and frightening situation. With my extremely limited experience with this site, I find it to be truly amazing! The rules for posting are excellent. In 2003 my husband had a heart attack, and I tried to find an informative support group. What I found were members selling "cures" and non-factual posts.

Thanks for your inspiration,
Catherine

Catherine,

You may be able to get some help from Joy aka pharmgirl at [email protected]. She recently lost her father to OC and lives in Richmond. She is a wonderful, caring person.

Good luck with your treatment.

Jerry