Hello all,

I am new to this forum. I was just diagnosed on 6/16 with verrucous carcinoma and hoping you can help me on understanding the results of the biopsy and advise me if you believe my ENT is correct.

Here is my story. I found a small growth on the bottom of my tongue around towards the back the 2nd week of May. Went to the dentist the 3rd week of May. He said it looked like a papillomia virus but was 97-98 sure it was not cancer and not urgent but I may wish to get it removed. Went to the oral surgeon on June 11th and he said the same thing. I said let's get it out now so he numbed me and cut it out and sent it for biopsy.
Pathology report came back as verrucous carcinoma. A cancer that from what I can find is very rare especially for a woman. I am finding it hard to find much specific information to this type of cancer in a non-smoking, moderate drinking woman.
Clinical impression was squamous papillomia.
The lesion was nonulcerated and measured 1x.04 cm and is corrugated.
Microscopic description:
Stratified squamous epithielium overlying fibromuscular tissue. The epithelium revevles hyperparakeratosis with a papillary configuration accompanied by broad and confluent rete ridges and parakertin crypt formation. A mile transmigration is noted within the lower layers of stratum spinosun. The connective tissue demonstrated a chronic inflammatory infiltrate.
Gross description:
An irregular fragment of tan-mink mucosa measuring 1.2 x 0.5 x 0.3. The specimen is friable.
Note- The neoplasm extends to the margins of the sections.

I guess they didn't check the type of HVP virus.The ENT that I went to suggested that we just go back in and cut a bit more out. Do it in the hospital so they can check the pathology right there and see if he needs to take more. I requested that we do a PET scan 1st so in case it was anywhere else we wouldn't have to back in again. PET came back showing no other cancer and a mild uptake in that same spot where we are going back in. I am scheduled next week to have the additional tissue removed.
I asked him about radiation or chemo and he said not necessary and I also asked if I needed to see an oncologist. He said no.

I would appreciate any information you think may be helpful. Thank you.

Welcome to OCF! Im sorry you have had a need for our forum but Im glad you found us. We will help you as much as we can with info and support.

Your cancer is a rare form of what most of us have had (SCC- squamous cell carcinoma). Im unsure if this type is caused by HPV. But the location of it being on the bottom of your tongue makes me think its HPV-. As you found out doctors can not tell visually weather a tumor is cancerous or not. Only the biopsy is what tells you what it is.

I suggest going to a major comprehensive cancer center (CCC) for treatment. This is especially important when dealing with a rare cancer. Below is a list of CCC's. They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and then also get another opinion. Remember, once a surgeon cuts it cant be put back.


CCC list

US News Best Hospitals List

Best wishes!

The 4 page pathology report from my surgery in 2006 mentions this in a couple of areas.

"The features are suggestive of Proliferative Verrucous Leukoplakia.
Features are in keeping with Verrucous Carcinoma."

I also mention it in my signature.

Also sending you best wishes.
Gabriele

Yes it is HPV but they didn't check the number 16, 18, ect. Since the PET came back with nothing else I just wasn't sure if I needed to get a 2nd opinion.

A second opinion can never hurt! Do your research to look for highly recommended Otolaryngologist (ENT) who is a recognized oral cancer specialist. You might need to have a family doctor do the recommendation or they might just need a copy of your pathology report to start the process.

Go with a written list of questions to make sure you don't miss anything. Even if it is a situation where you find out you were getting proper care all along at least you'll feel more comfortable with your current provider.

I have PVL, an aggressive condition that regularly results in Squamous Cell Carcinoma. I went to two oral surgeons and two ENTs before settling on the second ENT; all while the cancer was working its way along my jawbone. The problem with rare conditions/cancers is finding a medical professional that has knowledge of the condition or is willing to learn. I like my ENT; even with his impressive resume he is always willing to learn more even if it includes following up on information that comes from the patient.

First remember everyone is different. One thing I have learned is that radiation for me on or near my jaw would be rarely successful. Radiation usually destroys the jawbone without much effect on the cancer. Chemotherapy might be recommended if the cancer has spread to areas where surgical removal is not possible. Ask your physician what their take on this is and if radiation will eliminate the cancer alone or if it needs chemo to help it work better? Also check if chemo by itself will cure you or if its just for maintenance to stop the spread.

Good luck!