6+ years later I STILL have those fears, just not as often. It's part of the "new normal" or whenever I have a sore throat, cold, pizza burn on my tongue, etc.

It's been said many times here "You can be cancer free - but you're never free from cancer".

I am 3 years out, and still have those fears everytime I have an unusual "pang" or feel something different in my tongue. I have been convinced several times in the past that the cancer is back (and my drs very concerned) - but it wasn't. I've had enlarged lymph nodes and had FNA's (fine needle aspirations) of them, to find it's nothing. I've had an ulcer on my tongue that one of my docs even admitted to me she thought it was the cancer returning - and it was also benign and disappeared (this was 7 months after my surgery!) So, unfortunately, Gary is right in what he said. The only comfort is that as I experience these things, I realize that MOST of the time it's nothing, so I panic less, but I still always get them checked out if it hasn't gone away in a few days... I think the one good take-away here is that even though you may think it's a recurrence, often it's nothing.

Thank you all for your understanding of my stress. I hope I can get to that stage soon. Everytime I thought I saw/felt something suspicious my doctor wanted to do a partial glossectomy. I left that doctor and now see my current doctor at Fox Chase. So now, she looks at it and determins what she thinks when I see/feel something. This worries me because we all know you can't diagnose visually. My mom asked my current doctor why she can't do a needle biopsy and she said they are not good for this cancer. I have seen several people here say they have had them. Does anyone know why my doctor may have said that? The only good thing is a surgical biopsy doesn't hurt.� So far I've had one appointment where I feel fine and my doc agreed with me. I just hope I will have more and more of them and then I can start to relax.I still want to know why the medical profession doesn't spend more time with the mental stress of cancer. That has been SO MUCH HARDER for me than anything else to date. I realize that is not what they do, but I feel they should touch on it.
Gary, I like your quote, it makes a lot of sense.
Me2 I see in your signature you have a 65% chance of recurrence, what type of test is done to determine that?

Jim...you are right, I don't like things sugar coated:) Here's hoping nothing comes back and gets me in the kisser!!!

Suzanne, hope you are doing ok. Im sorry I missed your posts. Darn doctors sure can make you a nervous wreck so easily. I think since we have OCF that we are all very knowledgable about OC which makes us more aware of their terms. As patients, we are able to speak up for ourselves and get the proper care and treatments. You are so right on target about the mental aspect of cancer being so difficult.

Have a great 4th !!!

It is stressful, isn't it? Thank goodness we have OCF...it really makes a difference in my life.

Thank you Christine...hope you enjoy your 4th too:)

Suzanne, I understand what you mean about the metanl stress of Cancer. Drs. should spend more time in that area. I know mine gave me a 5 minute phone call and the next time I saw him was in the hopsital getting ready for a second surgery. Then I did not see him again until the two week check-up. Seems like they should give you some support or refer us to some mental support places. I know for me I have sought counseling, but I can not get my next appt. until August. I am wait listed in July. I know we will get to the point when we do not feel scared all the time, but it may take awhile. We are all here together.

Suzanne, I don't understand why yoyr Dr said needle biopsies aren't good for this disease. I have had at least 3 of them, and it let my Surgeon know what was going on. It sure wasn't the most pleasant of things, Everytime I looked the needle was larger LOL

There are multiple types of needle biopsies.

During a needle biopsy, your doctor uses a special needle to extract cells from a suspicious area. A needle biopsy is often used on tumors that your doctor can feel through your skin, such as suspicious, enlarged lymph nodes. When combined with an imaging procedure, such as X-ray, needle biopsy can be used to collect cells from a suspicious area that can't be felt through the skin. Often they will take more than one sample.

Needle biopsy procedures include:

Fine-needle aspiration. (FNA) During fine-needle aspiration, a long, thin needle is inserted into the suspicious area. A syringe is used to draw out fluid and cells for analysis.

Core needle biopsy. A larger needle with a cutting tip is used during core needle biopsy to draw a column of tissue out of a suspicious area.

Vacuum-assisted biopsy. During vacuum-assisted biopsy, a suction device increases the amount of fluid and cells that is extracted through the needle. This can reduce the number of times the needle must be inserted to collect an adequate sample.

Image-guided biopsy. Image-guided biopsy combines an imaging procedure, such as X-ray, computerized tomography (CT) or ultrasound, with a needle biopsy. Image-guided biopsy allows your doctor to access suspicious areas that can't be felt through the skin, such as abnormalities on the liver, lung or prostate. Using real-time images, your doctor can make sure the needle reaches the correct spot.

You'll receive a local anesthetic to numb the area being biopsied in order to minimize the pain.

Susanne

For what it is worth, while I worried about pain in my tongue, my jaw, teeth, ear, etc , I went the whole year after TX okay. It is so human to worry about the pain meaning the cancer is back. Ironically, when my cancer did come back, it was totally painless. For your comfort, my ENT was the one who spotted the recurrence solely through what she could see and feel in her exams. In fact, one month before she felt "something worrisome", I passed a PET/CT scan with flying colors (be skeptical about PET scans). In my case, pain was not an valid indicator, in fact the recurrence was painless.(the subsequent surgery and second round of radiation and chemo unfortunately very painful) So don't let the normal tongue pain, jaw pain etc get you frazzled. Keep seeing your ENT and doctors and let them worry about watching for a recurrence Have a Happy Fourth of July.
charm

Gary, thank you for the details of the needle biopsies. I'm going to have to talk to my doc again. Can Velscope and/or Vizilite be used for this?

Charm and Jim, you guys are always great. Charm, it's kind of scary that you had no pain and a clear PET. I actually don't get PET's anymore. My first doctor thought they were great and I had one every 3 months. My current doctor does not find them useful. That said, they do not do any kind of imaging, my appointments are simply light in the mouth and she feels around my neck. I just think by the time you feel something it's too late. Do I have this wrong?

I went to Sloan Kettering in NY for a 2nd opinion. Since SK is supposed to be one of the best cancer hospitals in the world I thought this was a good move. I saw the head doc for head and neck cancer and he said what my doc at Fox Chase says. No PETs and just watch it. This should give me some comfort and it does....I just can't shake the thought of it coming back. Maybe I just have not had enough appointments where it looks good. I've only had 1 in the past 3 years and that was last month.

Angelia, I really wish the docs spent more time on the emotional part. I do see a therapist and she is wonderful. The first therapist I saw was very "you will be ok. I don't need to see you again" I thought, well this isn't going to work. So I see a woman in the same practice and the very first appointment, we went into her office, closed the door, sat down and I sobbed for the entire hour!! Man that felt good...there was just something about her that I felt comfortable with. Same thing when I found this site....I can't say how the people here have helped me.