I wish I had read this board 18 months ago. What do you do when you have been treating with several surgeries and a round of radiation and you have cancer in another area of your mouth. Treatments have basically failed after two mandibularectomies, 6 weeks of radiation, and most teeth removed. I have surgery scheduled again on Tues. Feeling sick to my stomache
Sharon

There are other options - Paul b can probably tell you what they are. We definitely have a few people here who've been chasing it. Paul is one. There is proton therapy - and more radiation delivered differently. For what I am hearing it's either a very aggressive cancer (to be honest this is usually quite aggressive) or you aren't being seen at a top cancer center. Quick recurrences do happen but this is usually because it wasn't all removed to begin with. This is where you get the quick recurrence time. It also sounds non HPV related to me just by the treatment you were given and the location. If you aren't at a CCC get to one for a second opinion. Hugs and I am sorry you have to be here.

This makes me want to cry. I am being treated at MUSC in Charlston, S.C. I hope I did the right thing..Sharon

Hi Sharon - welcome to the family. Sorry you seem to be having a rough go of it. I agree with CherylD above, a 2nd opinion might be just the thing that helps you keep some sanity about all this. And keeping your sanity, especially in the face of continued difficulty is the name of the game here. You are definitely not the first person to have a tough time like this. We have several others whose road has been easily as rocky as yours. They have all survived to this point and you will too; it may just be a little rockier for you.

Get to know Paul and Bart and for that matter Christina; all have had recurrences and have stayed active on the forum. Bart is perhaps the best forum member for teaching you how to maintain a positive attitude in the face of difficulty. He did a wonderful job teaching me the right way to think about this stuff; it made my journey much easier.

I wish there were other steps I could tell you to take right now, but I'll have to defer to the masters at this stuff. No matter what, we are all here to help you get through this. We've all been there done that, still have the tee shirt.

Tony

Hi Sharon, each patient and cancer is different, so is difficult to really say the best course of action, but being at a CCC is a must. They can do reirridation in select cases, I did 5x, and surgery is usually the first line of Tx for recurrences, like you're having with or without radiation or Chemoradiation.

There are many reasons for recurrences, due to field cancerization from exposure to carcinogens, being chemo or radio resistant due to a number of factors, the tumor was outside the surgical or radiated field, be secondary, synchronous or metachronous cancer, etc.

I don't see it mentioned, but was an endoscopy or pandendoscopy done of the upper aerodigedtive track for any other possible lesions, biopsies. It is sometimes done before surgery.

Most places follow NCCN Guidelines, but then it comes to a point that some are out of the medical books like myself, as my doctor said, and then it comes down to the experience and training of the doctor to be able to treat you or not. I changed doctors several times for various reasons, and will again due to my ENT and Radiation Oncologist leaving the hospital

Good luck

Hi Sharon,

I've sent you two Private mails. Look up to the Menu bar, nest to "My Stuff" you will see a flashing letter icon. Click on that and it will take you to my PMs.

I wish you the very best as you walk this path!

Bart