This is my first post. 5 yrs ago I had tonsil cancer. Successfully Treated with 7 chemos and 35 Radiations. Thought all was well. Then in Jan. 2016 developed sore under tongue. Turned out to be cancerous. Surgically Removed at Mayo with clear margins. All went well until May. Oral exam showed firmness. Biopsy of this showed microscopic cancer cells on perimeter of prior surgical site. Another piece of tongue removed. Good clearances established. Surgeon sent us to my radiation oncologist as recurrence had him concerned. RO told me reradiation was not recommended
Due to high risk of damage to carotid artery and jaw. Thought maybe pencil proton could be a possibility (Mayo did not have) so off to MD Anderson. MD Anderson thought there may be more cancer. If so, they would do partial tongue removal, possible partial jaw removal, lymph node removal and then reconstruction all in one 11 hour surgery. Radiation not recommended because of same risk. Went in to surgery 8 AM. At 10 AM surgeon came out to talk to my wife. Said multiple biopsies were done. All were negative. I should be watched every three months. Risk for recurrence was high. Now I'm one week out and already wondering when is it coming back. Have a call scheduled with my Mayo surgeon in two weeks to discuss treatment plan going forward. Not feeling good about this.

Welcome to OCF, Lewis! Im very sorry to read about everything you have been thru.

Recurrences are everyones worst fears. They can be difficult to manage so its important you are going to a top CCC where they have the most experience with complicated cases. Would a third opinion from another CCC be something you could do? Its worth a shot to at least hear any options.

Best wishes with everything!

Hi Lewis,

I, too, would like to welcome you to the forum. My husband was given 70 grays of radiation and, at the time, we were told that it was the lifetime maximum. Eventually he received two more radiation treatments -- 20 grays each time over five sessions -- once to zap the swollen nodes in his airway and the second to clear the bacteria in his lungs from recurrent pneumonia. The RO was hesitant about the final radiation treatment as John was using up his "allowance" of radiation. You might be in a similar situation with regards to radiation.

Recurrence is an uncertainty and your doctors are right to want to monitor you closely. It maybe jumping the gun but do ask about the possibility of getting immunotherapy or getting into clinical trials if and when the need arises.

I wish you all the very best moving forward and if possible, please come back and update. The cancer treatment field is moving forward so quickly that it will help all those who are coming after to know what new treatments/options are available.

Do they have a counseling department at Mayo? It may help with your sense of uncertainty if you could go and talk to someone who has worked with cancer patients.