Wendy,

Welcome to OCF and very sorry you had to be here.

I was diagnosed with oral cancer (SCC of my lateral tongue, stage 1) in 2005. I also did not have any risk factors and never even heard of oral cancer before. I went to the best ENT in our area, had CT scan and all the other tests, and had my first surgery (hemiglossectomy) within a few weeks of first learning I had oral cancer. After this surgery I was given the all clear - told they got all the cancer. What a relief!

A few months later, after I had time to do more research, I decided to go for a 2nd opinion and ended up at a larger hospital in a larger city. During this process, all my records were reviewed by the this other hospital and I learned that the pathologist at the small, local hospital "misread" one of my biopsy slides and in fact there was "cancer at the margins" in the one area.

I then ended up going to a another hospital (larger and only did cancer) for a 3rd opinion. My options included more surgery (tongue and/or lymph nodes), radiation or "watchful waiting" and combinations of these. I was sent for more tests (PET/CT scans, etc) and there wasn't any signs that the cancer remained. Over the next few months I visited multiple doctors to determine what should be done. Even the doctors that initially recommended more surgery, were now in the "watchful waiting" camp or radiation camp. I opted for radiation because I felt I had to do something.

Then in 2010 I found out that the cancer had returned to the same location and again went for multiple opinions. This time I ended up at Johns Hopkins (Baltimore, MD) - one of the best head and neck cancer hospitals in the USA if not the world. One hospilat wanted to do major surgery, but the doctor I saw at Hopkins did not agree. He recommended surgery initially, but at Hopkins and most larger hospitals that treat a lot of H&N cancer patients they do "frozen sections" during surgery - this is a term for a biopsy done during surgery to make sure that clean/wide margins are obtained. This was not done at the first two hospitals (small, local hospital) where I had surgery. The surgeon would continue to remove tissue in the area until clean margins were obtained. So when I went into this surgery I had no idea how much of my tongue would be removed. Fortunately it was minimal. One of the hospitals this time wanted to remove half my tongue, plus lymph nodes on both sides of my neck (a repeat PET scan did not indicate that the cancer had spread). Since I already had RT in 2006, this was not an option.

If I was able to have a "do-over", I wish I had gone to Hopkins at the beginning. Who treats you and where you are treated are extremely important. In spite of doing research and asking lots of questions back in 2005, I did not know any of this and I did not find out about the OCF website and forum until a year after I was initially diagnosed.

One of the things I love about the OCF forum, is that all the posts made over the years are saved and searchable. I would often do searches of prior posts to look for other patients that had a similar diagnosis as me. You can obtain a list of posts made by any OCF member by clicking on their username, or search posts in the various forums. You can read about my "OC adventures" from 2010 by searching posts that I made.

Wendy, I would recommend a 2nd opinion at a major cancer center (use the list Christine gave you to find one near you). Ask lots of questions and make sure they do frozen sections during your surgery. Oral cancer generally spreads first to the lymph nodes in your neck, so many doctors recommend a neck dissection to check the lymph nodes for cancer. A PET or CT scan is a good tool to see if the cancer has spread, but from my understanding you need a certain volume of cancer cells to be present before they will show on a scan. Wishing you the best!