My father has been suffering from first tongue cancer (stage 3), after 35 radiation treatments and chemo, he was then told it was gone based on a PET scan, but incidently during a bronchoscopy the pulmonologist found a lesion which he biopsied and it was said to be a new cancer. 25 more treatments of radiation with chemo were order, he made it through 13 and ended up in critical icu and very ill. Dr's order him to have a temporary trach. At this point he was suffering from severe delirium and no one could tell us why. We opted to have them wait to do any further treatment as he was not stable. They went ahead to look and see if his airway was significantly obstructed, because he O2 sats were normal at room air. They found no more cancer instead! After about one year of him being in the hospital and nursing facility (where he ended up getting a staph infection in his blood), he made it home but with a persistant cough. In further follow ups with dr's we found out that multiple tumors had grown back right under the vocal cords in the trachea. On August 10th and Aug 11th they opted to laser off the tumors. The pain has never ended for my father and our family. Tomorrow he will be at MD Anderson because he has exposed bone and nerves in his jaw.
Currently I have been looking for a support group for myself, I am in the healthcare profession myself and understand what is happening but it doesn't make it any easier, actually I think it has been a lot harder. I have had a hard time finding any support groups for head and neck cancers, any suggestions would greatly be appreciated.