Just signed up and first time on board. My husband was diagnosed with Stage II/III SCC mobile tongue in late July. One week later he had 1/3 mobile tongue removed, lymph node dissection both sides (clear), trach, feeding tube, etc. He is 48 and we have never been very sick or hospitalized. He is doing fairly well and back to work already. He has an extremely dry mouth and neck cuts hurt and pull. I am the basket case, very fearful, crying alot. He now has another "spot" on his tongue further back from the surgery. They will scope and look closer next week. I just wanted some advice on how to cope with each new possible "problem". I am a Christian and have God in my life and good friends. But I feel so alone in this life/death health issue. My husband (Dan) and I talk about the cancer, sometimes laugh (to get through), but I think about it all day and night. People tell me they knew someone with this who died and I don't think they mean it, but it's really the last thing you need to hear just 2 months post surgery. Just wanted some advice.
Thanks,
Debbie/Caregiver
Columbia, MD

Welcome, Debbie, from a fellow caregiver, 5 years now. I feel totally alone with the life/death issue also, even though my spirituality has gotten through 6 surgerys and now a tumor in the sinus. Personally, I have never gotton over the fear and anxiety, every little symptom scares me...........So, you aren`t alone in all this, there`s a whole bunch of us here who just try to take one day, or one hour at a time. You`ll get a lot of support here.........Dee

Thank you, Dee, for your reply. It's so hard to know how to cope. I started reading this site just yesterday and it is good to know that there are many people out there struggling with my same issues. It does help make it through the day. You know, I come to work everyday as before, but I feel like I am in a world by myself since no one is going thru this here. Anyway, thanks so much!

While this response does not address your coping question, since refurrence is relatively common in oral cancers I thought I would add these points. It is important that all possible diagnostic work ups have been done, this includes not only head and neck scans, but ct scans of the lungs as well. Approximately 30% of those that have stage one and two oral cancers have occult metastasis of the cancer ot surronding tisssues that can not be picked up by conventional scanning techniques. That is why combined thereapies such as surgery and readiation are frequently the most successful long term treatments. I would have a conversation with your doctors about these issues when you go in for your next visit. Recurreences are frequentyly these micro-mets that were there all along from the original cancer, and are not actually a recurrence. Sometimes surgically oriented doctors have a perspective that needs to be balanced by oncologists from other specialties like radiation, or chemotherapy.

Brian,
Thanks for the info. Dan (hubby) had no cancer show in the lymph node dissection, so they did not do radiation. He had the 1/3 mobile tongue removed (side), and a graph from his upper thigh attached to his tongue. A few things I read on this site talked about a PET scan. What exactly is that? Dan had a CT scan and a chest x-ray before surgery two months ago and that is all. He does have something else same side of tongue further back. The doc tried to check it but Dan kept gagging. Doc said to wait two weeks and they will scope him and check it out. I wanted him to scope Dan right away. I have trouble with waiting for anything...seems like it just gives it more time to grow. Anyway, wanted to know if there are any more tests we should be checking into next doc visit next week.
Thanks,
Debbie

Hi Debbie,
Just wanted to let you know that sometimes CT scans don't always give you an accurate account of the cancer. The CT scan on my husband didn't locate the base of tongue cancer. The MRI did. Also the PET scan showed that there were only cancer cells left in the tongue and not any new growths in the nodes. Better to catch any new growths at their earliest and the PET scan does just that. Keep up posted.
Take care,
Wendy

Hi Debbie:

Welcome to OCF and the virtual family of good people you will find here to help you through this experience. I am not sure there is a magic answer to your question about how to cope with new problems and/or the fear of them. I would say, at the risk of sounding trite, that time does help lessen the panicked frenzy of each new day when the time of diagnosis and treatment seems like utter chaos. I still become a wreck when my fiance, Dave (one year out from surgery and radiation for tonsil cancer) complains of anything or has a follow-up appointment. My way of coping sometimes is to acknowledge (with some humor and alot of truth)that "Kim has gone ballistic yet again" then breathing a huge sigh of relief when all is okay. The reality is that it is okay to be fearful but when fear rules your existence, it is time to give it a gentle nudge over to the side. It is okay to be vigilant and do regular follow-up and with that comes trepidation. For me, striking the balance between what is real and what is my crazy anxiety is the challenge. Keep also in mind that cancer is a great equalizer of previously young healthy people and you are also grappling with being thrown head first (no pun intended) into a huge vat of your husband's (and you rown) vulnerability and mortality. Keep breathing...we'll hold the paper bag today.

Kim

Thank you, Kim, for the feedback. I agree that it gets a little easier to deal until something "new" shows or time for the ole checkup. We took a little trip to New York over the weekend and it was hard at first to let go of the fear, but by the end I wasn't hardly thinking about it at all. I really appreciate your words of encouragement!
Deb

I was in New York City over the weekend. Did you notice any good looking British guys with cute neck scars with petite brunettes trying hard to stay calm while haggling with street vendors?

Hey kcdc-
Too bad we didn't meet in NY...you would think with 6 inch neck scars on both sides, we could have found each other!!! I'm sure you will agree, it does help to get away! Thanks for writing!
Deb/Caregiver/hubby DX 7/03 SCC mobile tongue, stage 2/3, tumor removed, lymph node dissection both sides 7/30/03.