My goal is to gather information, assimilate it and develop a strong, strategic plan.

My story: I had a knot on the inside of my right cheek for about a year from a cheek bite that never healed properly. It was slowly getting bigger (but not fast and not much) and very painful. I tried everything before finally going to the dentist. He took a cursory look and said all I needed to do was get my wisdom teeth pulled. I pressed him - couldn't you remove it, or biopsy it? No, it will go back to normal after you have your wisdom teeth out. Since I make my living over the phone, it took me awhile to find the right time to get them pulled. As soon as the oral surgeon saw the 'knot' he said I definitely needed to get it biopsied. A few weeks later, I followed through and had it removed. Came back positive and I was referred to an ENT whom I happen to know from a previous visit.

Scans are being set up this week (PET & MRI, with & w/o contrast), then staging. ENT also ordered the biopsy be tested for HPV. I am 52, healthy, non-smoker, non-drinker (now - I can't tolerate alcohol or wheat), exercise 3-4x a week (swim 10-38 laps) but could be more physically fit.

I am trying to research how to prepare for C&R, wondering about getting a second opinion (what to look for, where to go in Orange County, CA), and what the best complimentary (naturopathic) practices are to support this condition and what is to come.

All suggestions are welcome as this is new and very unfamiliar territory.

Welcome to OCF, Heather! A second opinion would always be a good plan. Here is the NCI list of top comprehensive cancer centers.

NCI CCC List

In the meantime, read both here and the main OCF pages to better educate yourself. An informed patient makes for a strong advocate.

Best wishes with all your appointments.

Hi there and welcome - I can't give you advice on the hospitals unfortunately - but there is a lot of info here on chemo and rads. It's highly unpleasant (okay it sucks in a big way) but you will get through it. Naturopathically my advice eat healthfully - bump up your protein, and avoid antioxidants. Ideally this is treated by surgery first, and hopefully they will sample some nodes as well. If there is any concern after surgery they will recommend rads and chemo, hugs

Welcome to OCF! This is the greatest and most valuable site for oral cancer patients. Thank goodness it is early days for you so you can research all the info here and take advantage of all the folks here on the forum.

One thing is not to get too far ahead of yourself and it is early for you now. Do read and get informed but until you have your staging, it is very difficult to know what the likely treatment options for you.

Don

Thanks folks - appreciate your words & encouragement. Great to know you all are there, venerable veterans of this process.

PET scan tomorrow, will update with results.

If you can add at least your country/state then we can direct more specific replies. Treatment and insurance options vary a lot by your geography.

For example, scan results can be had inside a couple days in the USA, a couple weeks in the UK is not abnormal.

Thanks for the suggestion, I have updated my location (southern CA - OC to be more specific).

Scans back, SCC has not spread. Doc thinks we can get away with just surgery (oral & functional neck dissection?), remove nodes for testing, etc. Reconstruction will require flap from wrist.

Has anyone had this procedure? Curious as to what to expect, outcomes, etc.

Great news that it has not spread. I've had the surgery you are about to have: removal of cancer from the inner cheek (buccal mucosa) and patching with a flap from the wrist. Of course there's a neck dissection too to check nodes and join blood vessels to the flap. In my case the cancer was at the back and bottom of the cheek and a tooth socket was involved so all my bottom teeth on that side came out. That was also because of the planned radiation therapy. Sounds as if you won't need that.

The surgery is a big thing, not as bad as a glossectomy but still requiring hours of intricate surgery and reconstruction which means it takes about three days to get over the anaesthetic. You will have your affected arm in a cast and a bandage on your thigh or donor site. This is where they get the skin to cover the area in the wrist where the flap graft has been taken. All the wound sites have drainage tubes and bottles so you feel like a walking Christmas tree for a while. (I always walk as soon as I can.)

For a lot of or most oral surgery, nutrition is via a naso-gastric tube for a week or so to give the mouth time to heal. It's okay. Lovely when it comes out!

In my case I had a shaving off the mandible too because the tumour was sitting close to the bone. Maybe it's because of this that I ended up with trismus or limited mouth opening. If you end up with this it's necessary to faithfully follow instructions for stretching.

Hope this is not too much information. Surgeons have this free flap surgery down to a fine art and it's really quite miraculous how they can remove a cancer and patch up the patients mouth, preserving function.

Keep us posted.

Yes it's not a fun procedure but very doable - it is a fairly extensive surgery and recovery time is about a week at the minimum, but if you have a great surgeon (surgeons) it should be a fast recovery - post op. I've explained the procedure numerous times on here... If you can't find one of my earlier posts pm me and I'll recap it for you. Best of luck. And hugs