Hello all.
First of all let me begin buy saying I was a chewing tobacco user for a little over 6 year. I quit the day before I got married and had quit for almost 2 yrs. Last November I started again. I battled back and forth with quitting Till May. In early June I noticed a sore throat and my glands swelled up a bit. At that point I waited a week or so and then went to my general practitioner. She felt as if the symptoms i presented were more of a viral infection. Things got progressivly worse over that month and the first week of july i would wake up with a really sore throat. At that point I was referred to a ENT who felt around and looked around, but didn't see any need for concern. Since that point, I can feel a few lymph nodes that are swollen. My initial swelling on the left side of my neck has subsidded, but i have a lump on the right side of my neck and two along my collar bone. One on the left and one on the right. In addition, i have felt a pian in the back of my throat around my right tonsil area. The doctors keep saying things look o.k. Last friday I had some blood drawn and they were going to check for anything in there. Over the weekend I noticed a small, hard, but movable lumps on the floor of my mouth. Earlier today, i went to an oral specialist and he said he wanted to see me in a couple of weeks to reexamine the lump on the floor of my mouth. The lump on my mouth is not exposed (open) as would a leison would seem to be from the pictures i have seen. There is not a white/red spot on it. Only a small hard bump that is under the skin. Has anyone had similar results? At this point, the thought of oral cancer consumes my every thought. My wife is pregnant with our first child, and that has only heighted my anxiety.

MeierEce, Welcome to our site. Sorry you had to find us, but if this is cancer, you are in the right place to get good info from some that have been there. Are you going to a cancer center? Is the ENT connected to a cancer center? If not, you should go to one ASAP. Given your tobacco use and the tonsil, lump situation, you should consult some experts soon. Don't panic, always remember that until a pathologist says its cancer, it isn't. It can be other things, but just to be prudent go to a center and get it checked out as soon as possible. I wouldn't wait a couple of weeks. Also, I don't believe cancer can be detected through a blood test, so that would not be of use to check for it. Again, not to panic, but if you aren't at a cancer center, I would go to one very soon and have the experts take a look. Keep us posted, OK, and I will add you to my prayers.

Thanks for you advice. I found out that the hospital my primary care has a cancer center, and I am calling and getting a referal to that center. In general I know that the anxiety is getting to me. When I am talking about it or reading this message board, I feel more relaxed because I am reading all of you testimonies and it is an inspiration to me. I have felt that up until recently that the doctor has not been listening to me. It is very frusterating. I think in the blood test she was going to be looking for an elevated amount of white blood cells.
I do have another question:
I want to go to this doctor and be a self advocate, but I am not sure what to ask for them to check out? Do I have them do a CT scan, an MRI to check the lump in my neck? What about the sore on the floor of my mouth? Does the MRI or CT scan show any abnomalities in the tonsil?

Also thanks for adding me to your prayers, you all will be in mine.

Andy

Andy,

You are never too prepared going to talk to the doctors. Everytime I get in the room my IQ goes down 30 points, and I'm only able to keep up due to all the research. In your case I can't imagine doing anything without a definitive diagnosis, which will probably be the result of a biopsy.

Let us know!

David

Andy, some diagnostic tools they can use, in order of less expensive to more expensive, would be feeling around/visual, ultrasound, apparantly a good ultrasound technologist can tell a lot. Needle biopsy, which is the most definiative way of telling what's going on. and PET/CT, scan.

Step after that which is more invasive is to remove one of the swollen nodes and do a biopsy.

There's probably other trics and things they can do, I'm not a medica professional but all of the above have been done on me.

Bob

Andy,
All your questions have been answered by our awesome board members so I'll leave that part alone.
Congratulations on expecting your first child! I have 7 girls and there is no experience in life that will ever rank above the birth of your children. A favorite saying of mine from Elizabeth Stone is "Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body".
Do yourself, your wife and your child a favor...........put the chewing tobacco out of your life.
Take care and please let us know what you find out.
Minnie

MeierEce,

I used to feel intimidated by my late husband's doctors. One day when we knew things were down to the wire, we armed ourselves with a list of questions so we wouldn't forget or feel silly for asking things. (You know how you have big worries at home that seem trivial when you get in front of a white coat?) Well, I am a secondary school teacher and my husband was a college professor, yet this doctor in a white coat made us feel not so smart somehow. I looked at my list of questions and decided that if my husband's life was at stake (and it was), there was no way I was NOT going to make that doctor stand there and answer every single question we had whether they were silly or redundant or time consuming, whatever.

So, that's how you have to handle this. Get the best facility you can, get the best doctor you can, then ask every question you can and don't settle for being shrugged off. If you feel like something's wrong (like my husband did for months before a big recurrence) go with your gut and keep after those doctors. It's your life and you have to protect it.

Christine

Andy,

Welcome to the neighborhood. Hopefully, your membership to this club will be revoked for lack of proof.

I did not have oral cancer consuming my thoughts as you speak of but I did have a nagging hunch that the lump and then the second lump in my neck were something more than a sinus infection. I spent much of December, Jan, Feb, Mar, Apr, May, Jun and July bouncing from doctor to doctor. I had four courses of antibiotics. I saw my allergist, family practitioner, 2 internal medicine specialists, dentist and, finally, a plastic surgeon. I asked him to just remove the lump to give me peace of mind since I could see it when I looked in the mirror and I could feel it when I turned my neck. He wanted a second opinion and suggested referring me to an ENT. I looked at my wife and she said take it out. I looked at the plastic surgeon and said there's your second opinion. I went to him because there are so many nerves in the face and neck, I wanted someone that could maneuver these nerves and remove the lump. He came out after the surgery and told me it was infected and puss filled and looked oddly enough like tuberculosis. He said he could see another swollen lymph node farther back and because he could not get to it in the room he was using, he opted to stuff everything back in and just take a biopsy. This was Friday, July 18, 2003. July 21, 2003 he called and told me I had metastatic Squamous Cell Carcinoma. Over the next few weeks I found out I had stage IV cancer with the primary tumor at the base of tongue.

I knew something was wrong but the important thing is that I never stopped until I had peace of mind that the doctors were doing enough to answer my question. Had I stumbled on this site in December 2002, I would have started treatment sooner because I would have known who to go to for positive confirmatin of what I was dealing with instead of trying to rule out what it wasn't.

Give yourself peace of mind and find the right place to go. Clear your mind and focus on the miracle of life that you are sharing with your wife. Nothing will ever compare to the experience of your firstborn child. I am wishing you nothing but the best of all possible worlds.

Ed

To update you. I scheduled an appointment with an ENT for the 17th of this month.
I do have a question for you all though.
What tests do I ask that they perform? They have all felt around the lumps on my neck and all determined nothing was wrong. But i feel like something is caught in the right side of my throat. If i push on my neck a bit, the feeling gets more intense. Reading the bottom of everybody's profile, some of you have indicated base of tongue primary. What were some of your symptoms?

MeierEce, generally base of tongue cancer victims don't present with any symptoms until it has metastastized to the regional lymph nodes. Then the symptom is a lymph node that has swelling that does not subside. This was my case.

When you see your ENT, you should expect a very thorough physical exam in that he's going to be feeling around the outside of your neck as well as all around the inside of your mouth. Chances are he's going to scope you, which includes running a small, flexible, lighted tube up your nose and down the back of your throat. From there he'll be able to inspect the base of your tongue, your lyrnax as well as other structures in your throat. If he finds the lumps in your mouth suspiscious, he may stick a needle in them and extract some cells for pathological review. This is called fine needle aspiration (FNA). Keep in mind that biopsy and pathological inspection is only concrete diagnostic method.

Best of luck...

-Brett

MeierEce,

To answer your question about symptoms. my daughter Heather had cancer in the base of her tongue. Her main symptoms were a sharp pain in her ear and a sore throat with a feeling that something was caught in her throat. She had no enlarged lymph nodes. A neck dissection revealed cancer in 4 nodes, but the largest was only about 1 cm.

Besides doing a visual with palpation, doing a scope like Brett said is a good idea. Depending on what that does or doesn't show, either a biopsy or a PET/CT scan would be preferable next. CT scans show some tumors, but not all (Heather's 3+ cm tumor wasn't detected). An MRI is better, but a PET/CT is usually better yet. Unfortunately, no diagnostic tool is foolproof.

The main thing is to have the doctor explain everything. If he thinks it isn't cancer, why not? If he says it's because you are too young or didn't use chew enough years, call him on it. Heather was 28 when diagnosed and never used any tobacco, but she died last October from oral cancer.

If the doctor has valid reasons for feeling the swollen nodes are no big deal, that's good, but make sure you are satisfied with his reasoning.

One thing you said leads me to believe that perhaps this is not cancer. You said that the initial swelling on the left side has gone down. Swelling doesn't usually subside once cancer is in a node.

Good luck and be sure to let us know the results. Hoping for good news for you.

Rainbows & hugs,
Rosie

MeierEce,

When I met with my DF doctors, it was apparant that 1)they were incredibly busy and 2)one of the doctors was incredibly bored by my questions. Normally I feel bad asking questions of doctors knowing how busy they are. This time, though, I knew the answers would (in your case only could and I pray it turns out a-okay for you) change my life, I couldn't care less about their schedules/boredom. They even told me the finger exams, CTs, etc. was incredibly underwhelming!!

Didn't matter to me, and it shouldn't matter to you. Beat down those doors and demand ANSWERS and RESPECT. They were answering every last questions I had. I was a split second from looking at bored Doogy and saying "Excuse me, but if you're bored. There's the door. Use it." To this day I still regret not saying it.

And their "underwhelmed" feeling dissipated when the second surgery turned up a lot more cancer their "finger exams, CT, etc." didn't show.

And ask for anything they've got. PET Scans, CTs, needle biopsies, whatever. You can bring those to the different docs to review. Like I mentioned - my scans/xrays showed zippo but the second surgery turned up a bunch. I personally don't think any non-majorly invasive test is overdoing it.

GO GETTUM!

Sabrina

MeierEce, Another test you may end up with is a sonogram-directed needle biopsy. If the small needle biopsy doesn't show conclusive evidence either way, then the sonogram biopsy may be required. I had two small needle biopsies which didn't come back positive, only "suspicious", yet the sonogram-directed biopsy was very conclusive and came back positive for SCC. That after CT/PET/MRI scans that were also "suspicious". Hang in there, don't know whats up until the results are sure.

Thanks for the advice.
My blood test came back and i had a slightly elevated white bolld count. Not sure if that means anything or not. I am going to be out of town for a couple of weeks and the anxiety is ruining me because I feel like soemthing is wrong but I don't know what it is. I have not been able to concentrate on anything but how I have been feeling. I am constantly feeling around my neck and my mouth. My biggest concern is that I have lumps on my neck, I feel like something is caught in my throat and I have one moveable bump on the floor of my mouth. Last night I had a long talk with my wife about how I was feeling. She has been so supportive. I find my self doing all sort's of research on what this could be and i keep coming back here looking for more information. Thanks to you all for who are posting.

Andy,
Interestingly enough people usually are freaked out in the stage where they are wondering whether or not they have cancer but calm once they know. I know that I was. As soon as I learned that I did indeed have cancer, then I calmed down and did what had to be done. It is not knowing that is so maddening.
Although I was Stage IV I had no symptoms other than a dry, scratchy throat, and was not finally diagnosed until I went to an ENT complaining that when I swallowed food, it would hit something and come back up. First he sent me for a barium swallow which showed something, but once I returned and he put that little scope down my nose, he could clearly see the big tumor at the base of my tongue.

I wish that your appointment was sooner so that you could be relieved of the anxiety, and , of course, I hope that it is something other than cancer.

Best of luck,
Danny G.

A slightly elevated WBC can be a sign of an infection. Lumps around the neck could be knotted muscles from tension or too much computer usage. Swollen lymph glands are usually almond shaped to the touch as well.
About your ENT exam - they should use mirrors, palpation and possibly a nasolarygniscope down your nose for a video look see. None of these are any big deal. They will numb you for the scope. Even if they do a biopsy - it's relatively painless. We always say "it aint cancer until the pathology report says it is".

I hope that you have made a decision to never use tobacco products again.

I was able to get an exam first thing in the morning. I know so much more about this disease than I did just a few weeks ago. I will let you all know how things turn out. I have kept each and every one of you in my prayers since I found the OCF site, so thank you for your thoughts as well.

Quick Update. I went to the Exam last tuesday and the did a scope and felt around for a bit. The doctor didn't see anything that he felt was out of the ordinary. He did prescribe some flonaise and somethign else for some congestion adn minor acid reflux disease i have. In addition He did as a precautionary measure order a CT scan. I have that next monday and a follow up to review the results. So i gues no new news is good news. I continue to wish all the best for each and every one of you. Your optimism has been a real inspiration to me to help me through the last few weeks. Thanks again.

Andy

Andy, Thanks for the update, there are plenty of people here just waiting to cheer like the ground crew of the Apollo 13 space craft.

Here is to hope!

Thanks for the prayers. Today, i was feeling around and I feel lumps on my lip. I am not sure how long they have been there but I called the ENT immediately. I have my CT scan tomorrow and the follow up with him next monday. Sabrina, I read what you wrote how you tests didn't show up anything but, something tells me I can't let this go just yet. My wife keeps telling me to relax and that is helpful, but I can't help but feel that I have something terrible about to happen.
On another note, in an earlier post I mentioned that part of my anxiety is around my wife being pregnant. Well we went for an ultra-sound and found out that we are having a little girl.
I will continue to let you all know how things are going.

Andy

Hi, Andy!
Wonderful, wonderful news about a baby girl! Tom and I are proud grandparents of a one-year old girl and a one-month old boy and, if it weren't for Tom's cancer, we'd be sitting on top of the world.
I had to rely on deep-breathing exercises to calm my anxieties while we waited to find out what was going on with him, and I'm sure we all understand your feelings now.
I hope all goes well, and that the next few months will be spent joyously awaiting that precious gift from God.
Prayers are coming at you!
Nicki

Quick update.
Last week I had two seperate appointments. One with an oral surgeon, who believes what I am noticing is normal in every person, that is slightly relieving. Also the precautionary CT for the lumps in my neck also happend last week. I go for the results of that on Monday at 1:30. I will let you all know what the outcome is. Thank you for your thoughts.

Andy

My fingers are crossed for you! I hope all is well; certainly get back to us with your results!

We're praying for good news!

Christine

Well I went to the Dr's today and got the results of the cat scan I had last week. He said they were all clear. The lump in my neck he said doesn't concern him either. The bump on the inside of my lower teeth is Tori (sp?) and it isn't something I should worry about. He said he does want to see me in 3 months just to follow up with him. This was the 7th dr I have had examine me in the last couple months so I guess I am going to trust the medical proffession at this time. The alergy medicine and acid reflux medicine does seem to be helping a bunch do I felt a great sense of relief after today's meeting. I wanted to thank you all for your suggestions, thoughts and prayers over the last few weeks. I will continue to pray for each and everyone of you. After the rounds of emotions I have had over the last few weeks, reading this forum has really helped. Thanks for all that you contribute to it.

Andy

Good news Andy, thanks for sharing, and God BLess You! Carol

Andy,
I hope that this is your wake up call for stopping the tobacco products for good. You may not be so lucky next time. As comforting as it can be here at times on the boards, this is a club I would rather have not joined.

What a wonderful piece of news for you and your wife, Andy At the very least, after all this, you will be very aware of what your body is telling you, and hopefully you'll encourage all your friends to make sure their dental and physical check-ups include a good oral exam. I can't seem to tell enough people about that right now - - and luckily, because they know I am not an alarmist, they are listening!
Good luck to you!
Nicki

Very Good news Andy!

Tori are bony growths that appear over time. They are harmless unless they get large. They can be surgically reduced.

Take good care and now you know a lot about oral health.

If the comfort you recieved here is valuable to you please consider a donation! (tell your family and friends too)

Andy:

I have been a smokeless tobacco user for over 17 years and never really thought about the consequences. I now have two children and have realized (finally, I hope) that I need to take care of myself, if not for me then for them. About 4-5 months ago I was getting soreness on both sides of my tongue and started paying attention, more closely to my tongue and oral area. I could definitely see mucousal damage along with leukoplakia, erythtoplakia, and excessive thrush on the tongue. I started feeling around my neck and jaws constantly. I felt bumps, abnormalites, pains and tinges I had never noticed. I could not keep my focus. In fact, I was a nervous wreck. I would see white spots on my tongue and think the worse. My DR referred me to an ENT (on my request, not his). After an initial visit and follow-up, the ENT assured me that I did not have cancer. It came down to that I was looking for something that was not there....made myself believe it.

Dan

Way to Go Dan..so glad to hear you finally found your brain....enjoy your smoke free life with these two great kids.
Take Care
Marica