Hey, I just found out this great website this morning. I have been living in panic for the past 6 months.

My name is Jenny(31 female) with no history of smoking and drinking. I have been having chronic sore throat, numbness of the tongue, pain in neck and ear for about 6 months. I went to 4 different ENTs (including 1 head and neck oncologist), 1 dentist and 1 oral surgeon. None of them are able to tell me what the problem is. Even I knew HPV-caused oral cancer is fairly new subject, still I brought up my concern with HPV and oral cancer, but I was told there is no such connection. My condition has gotten progressively worse lately, I could not focus on my work, could not sleep and I am living in fear every day. I do not want to wait here doing nothing until the cancer comes. I have been doing a lot of research regarding oral cancer, HPV and their connection. The more I read, the more I am concerned that I may get infected with HPV around my neck and mouth, and seriously worry that I may be in dangerous situation.

The following is the history of my present illness:
1. Started feeling bump on the roof of the mouth, as well as numbness of the left side of the tongue and facial pain, along with chronic throat pain. CT-neck (12/07)shows no significant complicating process was seen in the CT of the neck. Less than 9mm size left single jugulodigastric lymph node. Tiny to small to be characterized by hypodensity in the left lobe of the thyroid. I was told there was nothing to concern about.
2. Continue to have the above symptoms and start having neck pain, swelling lymph nodes, something stuck in my throat.
3. US-thyroid (2/08) shows small hypoechoic solid nodule with central calcification the the left lobe of the thyroid gland. Bilateral small cervical lymph nodes.
4. Last visit to ENT(3/21/08) was told stomach acid reflex and priscirbed prilosec. But I do not have any reflex problem. Continue to have neck pain and swelling lymph node.

Based on the symptoms I am having, I really look forward to having myself fully diagnosed to know whether I have been infected with HPV in my oral and whether I am in early stage of oral cancer. I am so frustrated I could not find a good doctor who can tell me the problem.
Therefore I hope to get more information regarding where I can get this kind full check up. and what I should do now.

Thank you very much

Jenny

Jenny, what area are you in? All those docs and they still do not know? Maybe if someone here on OCF lives in the same area , meaning state, they can lead you to their Doc.

John

stage 4a tonsil and back of tongue and lymph nodes

Jenny,

There are people in this forum that can direct you to a CCC - Comprehensive Cancer Center in California. As John asked, can you be more specific on the area you live in.

Jenny,

I hope by now you have read about the connection of HPV to oral cancer as many of us here can attest to it firsthand. I also encourage you to find a CCC and get some answers.

This is Jenny2008, for some reason I am having some trouble logging in. So, I re-registered again with different ID.

John, Tom and David, Thank you very much for the message. I feel that finally someone believe me. One of the ENTs I went to even thought me having some kind of mental issues and recommended me to see a counselor. I have requested tissue biopsy for hpv couples of times, but never got it.

Life is not fair. I will finish my PhD in 2 weeks and I am suppose to be very happy now. But I feel like my life is about to be over. I keep telling myself that I need to be positive, but this is so hard.

I am in michigan, close to Karmanos cancer center and University of michigan cancer center. Also, I have friends in LA and I will go there if needed.

I have an appointment with another ENT tomorrow, I hope he will agree to do biospy for me. If anyone living in the same area may recommend some docs, I really appreciate it.

Thank you again, this is really an wonderful website

Jenny

Jenny:

I wish you luck at this scary time. Only a biopsy will tell you for sure if its cancer. I hope you find tomorrow's appointment will go better than your previous ones. Good luck.

Christine,thanks a lot. I am listing some questions that I am going to ask the ENT on my next appointment.

Jenny

Jenny,

Your life is not over even, and I emphasize EVEN, if it's cancer so stop thinking all these negatives. I was a Stage IV, and there isn't a Stage V, and I'm posting today feeling just as well as I felt before they told me I had cancer.

Keep us posted and ask away.

David, Thank you very much. You have such a such wonderful spirit.
I have an appointment with my ENT today,and I hope he will give me biopsy this time. Do I need schedule an appointment with CCC now Or wait my ENT referral if needed. I just do not want to wait here doing nothing. Is it better to do the biopsy at CCC than ENT office?

Thank you very much

Jenny

Thank you

First you need to see IF you have cancer and what type. Moffitt wouldn't schedule an appointment without a cancer confirmation so that may be true of other CCC's.

I jusut am getting so frastrated because of the bad experiences with the previous ENTs. Do you know anyone here lives in michigan, I really want to find a good ENT. Thank you