Hi AK,

I don't mind answering any questions - just ask. You can see dates and treatment in my signature line. I've had 4 surgeries - first in June 2005, and then 3 more in 2010-2011 due to a recurrence.

I was diagnosed as stage 1 in 2005 and recommended treatment was surgery alone. I found out a few months later that my biopsy was misread and there was cancer at the margins. This doesn't happen often fortunately. I sought three opinions on what to do, and the final recommendation was "watchful waiting" or radiation. I opted for radiation. My doctor, the best ENT in our area, is still my primary doctor, however, I found out the hard way that where you are treated is also very important.

In 2010 when I had a recurrence, I also went for three opinions but this time I included Johns Hopkins in Baltimore - best decision I made. JH is one of the best head and neck cancer hospitals in the country. I had my last two surgeries there.

Most of us are treated by otolaryngologist or Ear, Nose & Throat (ENT) doctor. ENT's treat a number of conditions including oral cancer. One question to ask the doctor you are seeing how many oral cancer patients he/she has treated. You want someone with lots of experience.

Ask the doctor to explain the biopsy results. He should recommend additional treatment since the tumor is present at the margins. Poorly differentiated isn't good (sorry to say) - well differentiated is better. P16 I believe is related to HPV status - now a leading cause of oral cancer (but rarely positive in SCC of the tongue).

He should recommend additional tests - CT, PET and/or MRI to determine if the cancer has spread. SCC usually will spread to the lymph nodes in the neck first. Look into info on neck dissection (removal of lymph nodes).

As we've said, there is a lot of great information on the OCF website and forum. Use the search functions. You can find more information on my treatment (or other member) by clicking on my name to see my posts.