As most of you know, I have only had glossectomies, no radiation or chemo. I still have some random pangs of pain where my glossectomies have been. Common sense tells me this is normal but I don't seem to get a straight answer from my doctor.

Any thoughts on this are appreciated. I guess just knowing radiation may be in future SCARES me, and these pangs makes me think it's back. My doc said she doesn't want to do it now because I could be a candidate for it in the future. If I have to do that I know I can with all the support here but man...it scares me so much.

I am only 8 weeks out of surery, but my ENT told me that I may have pain in the tongue area for 6 months or more. He said that it make take that long for it to completely heal. I know what you mean about pangs of pain. I have them quite a bit and always worry about whether or not it could be more cancer.

Hi Angelina,

Thank you for such a speedy response!! Looks like we have had similar treatment so although I don't want either of us to have "pangs" it makes me feel better that I'm not alone. My last surgery was in Feb 2009 and it was my 4th one. I think I should anticipate some pain. Thanks for letting me know what you ENT said. That's another questions I have...most people here have seen an ENT, and I see a surgical oncologist. This is Suzanne's Stupid of the day....are they the same?

Suzanne, it's been just about 2 years for my surgery and my tongue really feels no better than it did. Everything and everything make it hurt and burn, I hate to be so blunt, but if you are like me, you want the upfront truth and not some prefab story from some that really don't know.

An oncologist is your cancer Dr, an ENT LOL who knows.

I have not seen an oncologist yet. I May be stupid in the area, but I really trust my ENT. He has done research in head and neck cancers and studied under a head and neck cancer Dr.

I had pain for around 6 months - it took forever for the mouth sores to heal - they took the longest time. I also had numerous bouts with thrush, which caused a lot of pain and burning sensation as well. From my own personal experience I found the MO to be the most understanding about the meds I needed, but maybe your ENT, surgeon or even PCP is the right one to ask, try them out and see where you get the most satisfactory results. Many institutions now have pain management specialists as well.

I guess my problem is whenever I feel something I think "oh no..it's back" I try to reel myself back to reality and remember my last appointment in June where the doc said "all looks good" but....after my last surgery, it was severe dysplasia on right tongue and moderate dysplasia on my left cheek. Am I just supposed to live with this? How do I know when it's changing to cancer? In my experience when I have more pain that's when we do surgery.

Suzanne,
I am sitting in my bed doing the same thing. I woke up this morning with a pain in my hard palate, near my last molar on my right side. This pain shoots off into my ear every so often. I am trying to tell myself that I just have a spot that's healing, a nerve or something. I just had a ct scan that showed not one thing to worry about. So why am I worried? I'm afaid it's going to be like this for at least the next couple of year.
Amy

Suzanne, as mouthy as I get and as tough as I act, I worry too and just about everyday. It seems the pain is always making a reminder to us,.One day tho.... " POW RIGHT IN THE KISSER" as Jackie Gleason used to say to Alice LOL.

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.

Velscope and Vizlite are not very accurate. They are a prescreening device only. They will indicate a pizza burn as a suspicious area. The biopsy is the gold standard.

Most H&N tumors are asymptomatic,(pain free) so most of the time pain is actually a GOOD thing - meaning that it's an infection or some other cause.

I never got a post Tx PET and it is not indicated in the NCCN oncology practice guideleines so many insurance companies will not pay for them. Post Tx PET's are somewhat controversial. some institutions do a lot of them and others none at all.

The doctor typically makes the fianl call and, in my experience, the ENT's and H&N surgeons don't like scans anyway - they prefer the manual exam, scope or mirrors with palpation. The manual exam as part of watchful waiting is SOP. My MO and RO are the ones who always ordered thwe scans. It makes sense if you consider that SCC is a disease of the squamous cells, which are any cells in the body that are exposed to air. So direct visualization is pretty effective especially for recurrence at the original tumor site, which is the most common.

My CCC wanted an annual MRI and chest x-ray done and that was it for scans. The purpose for that was checking both for local recurrence and locregional metastesis.

I still have semi-annual blood work done.

The first PET scan I had was for triage purposes to see if I was, in fact, treatable. It revealed no other uptake than in the tumor area so it was a great relief.

Boy could I go for a Pizza Burn about now. Even a hot sausage burn would be nice, LOL Right Christine?