Although I have been an active "lurker" on the forums, and have replied to quite a few postings, I haven't ever started my own post. I wasn't sure if I should post this under the recurrence topic but I think I am still hanging on to the hopes that maybe this is not a recurrence... but I just feel the need to get this all out and I am trying not to burden my family or friends with it at this point.

OK, so here goes. You can see by my signature that I was diagnosed with SCC of the tongue in April 2006, surgery at MD Anderson in May 2006, no radiation or chemo. Because of some markers found in my tumor tissue that indicated I had a 65% chance of recurrence, I am also involved in a clinical trial for prevention so I am seen every 3 months. (and believe me, between those visits my flashlight and I have become best friends - I've never looked in my mouth so much!) On my last visit, I told my Dr. that my neck had a strange "tight" feeling - didn't seem normal. He thought it was related to my neck dissection and wasn't concerned. He said everything looked fine.

The neck tightness didn't go away - in fact, got worse. By December it was feeling tighter, sometimes with a "burning" sensation. In view of what my dr. said, I thought it was probably related to the fact I was doing a lot of intense computer work. I thought it might get better during the holidays, when I wasn't at my computer 12 hours a day. It DID seem a little better over Christmas, but right after New Years I noticed a small lump which I think is a swollen lymph node. I've had an enlarged lymph node before - in fact last year around the holidays has both an ulcer on my tongue biopsied - benign! and an FNA in January of an enlarged lymph node - also benign. But now I am really panicking.. not sure why I just know it's not good.

Called my ENT here right after New Year's day - first appt they could give me even after begging to get in ASAP is tomorrow. In the meantime emailed my nurse at MD Anderson and let her know what was happening - I was already scheduled for my F/U on Jan 23 with the MO who's following me now. Based on my symptoms, am now scheduled for a CT scan on the 22 and to also see my surgeon on the 23rd. Depending on what my dr. here relays to the MDA docs, may have more tests.

I know from everything I've read here that "it's not cancer until the diagnosis says it is" - but I'm having a really hard time convincing myself of that. I can't sleep at night, and I can't concentrate on work during the day. I re-read the post Donna did about the Worry/Anxiety 10 Commandments - I know it's all so true, but I can't do a thing about it right now. Plus, I don't want to scare my husband to death about all the dark thoughts I am having so haven't shared much with him. Not told anyone else in my family yet... don't want to worry my daughter/sister/mother. Am going to ask my dr. tomorrow for something to help me sleep - that might make me feel better. The waiting is what REALLY gets to you... I just want to know what the facts are and then figure out how we can deal with it.... but of course, my mind jumps off into scenarios that I can't stop...

sorry to go on and on but just had to get some of this out of my mind and onto paper... it helps a little... I know many of you know what I am going through first hand...

Oh Ginny - I am so sorry for the worry and anxiety you are having to deal with. But it's good that you are seeing the ENT tomorrow. You've taken the right steps, but wouldn't it be much better for you if you could confide in your husband? Sharing something so difficult really helps to lessen the load you are carrying. And I know as a caregiver, it really helped me a lot to know what my son was going through and especially being able to do something even if it's just making a phone call or holding him in my arms. You really won't know until someone gives you a definitive diagnoses what's really happening, so try to think about all the positive things that could happen, not just the scary stuff. You've already done a lot to get things moving and in the right direction. When you talk to your doctor tell him exactly how you are feeling. If you can take someone with you to your appointment, it would really help to be able to remember what you find out and to ask the right questions. I'm so glad you came here to express your fears. THere are lots of good people ready to support you and offer good advice. Let us know what happens tomorrow.

My heart goes out to you - and boy haven't we all been there whether it was a first diagnosis or a reoccurance. You are doing all the right things and while those 10 commandments are for sure TRUE, its pretty tough to put your faith in them enough to reassure yourself. Sometimes you just have to let go and let the professionals do what they do. You don't like it, the waiting is from HELL, but you really don't have much choice. Its not like you have your head buried in the sand - you have done everything you can and I sure hope that venting your feelings helps to ease your worries. As trite as it sounds, none of us can cross a bridge that we are not at. Try some deep breathing exercises to calm yourself, distraction is good as is busy work. Try to not let this thief (cancer and the fear thereof) steal even another second from you. You've done what you can - now put that worry away and try to enjoy this day. If not, cancer - whether here or not - has stolen another day from you! Protect yourself against thieves!!

Donna

I sure understand where you are coming from. Been there and still doing it. If I had a magic wand I would wave your fears away . Vent here if you can't talk to your hubby and we will read the vent and answer. I try to keep busy all day and evening, when I'm not here reading posts. Good luck with your dr tomorrow

Anne Marie - thanks for your kind words and advice. I agree about lessening the load - I finally told him last week how concerned I was (but didn't really give him the full details) as I had been keeping that from him - and it did help. But I hate to burden him with my darkest fears as I hope and pray it's just my anxiety running away with me.
- And Donna - wow - what great advice about not letting cancer steal another day from me - it IS a thief! That really made me feel better when I read it... made me want to fight back!
- Jim - I have been following your story and thank you for offering your support while you are going through so much. Although I know you have some hard road ahead, I admire the way you are trying to deal with all of it while offering others support. You are one great guy!
- I knew it would make me feel better to get some of this out of my internal thoughts and fears and it has - thanks to everyone here.... thinking positive thoughts for tomorrow and beyond.

Ginny,
the only way I'm coping with the thought of next Wednesday's biopsy and the follow-up on the 30th is by coming on here, doing stuff I enjoy, and telling myself that whether it's new metastases or not, worrying isn't going to affect the outcome.
My partner knows that I'm worried sick about both the procedure and the chance of being given the 'even palliative radiotherapy wouldn't help at this stage', but continues to be upbeat for me, bless him, whilst not dismissing my fears.
Am so thinking of you Ginny and stay with us to help you through,

Brenda

Ginny,

Talking to your spouse is helpful to both of you. You need to share everything with him especially your fears. I feel that you are probably feeling a little upset keeping it from him and it's adding to your anxiety. Just hearing your spouse's comforting words is soothing to the sole.

Thanks to everyone for your thoughtful replies. Brenda - I read your most recent post - so sorry you are having to go through this biopsy and tell that d#%%* doctor to give you some drugs!

I am feeling a little better as I went to see my ENT here today and she didn't freak out when she felt my neck. (she's really great - very honest with me and although she is not associated with a CCC, I feel really comfortable with her following me at home) I do have an enlarged lymph node but she says it could be just another one like I've had before - I've had a couple that enlarged but were fine... Of course she said I am doing the right thing by getting this checked more when I go to MDA in a week. She said some of what I am feeling is just because I am thin and have no fat in my neck, esp. on that side.

So I will try not to worry so much and just wait for the results of the tests they are doing at MDA on the 22 and 23....

P.S My husband brought me a dozen roses home tonight - I think he was just as relieved as I was that she didn't find anything drastic...

Good news ginny

love liz

Aw--roses--how lovely!
Look at them, enjoy and relax now for a week!
Brenda