My brother (he is my twin) was diagnosed with SCCHN last June. A tumor had grown from the left side of his throat below his tonsil. It eventually got large enough to impede swallowing. By mid June it was causing him significant pain up his neck into his left ear. PET scan and biopsy confirmed it to be squamous cell carcinoma. He had no lymph node involvement. Tumor is HPV p16 positive. Beginning in the middle of July he underwent 7 weeks of radiation in combination with cetuximab (mid July-early Sept). At the end of radiation he had a feeding tube inserted. He had been trying to swallow liquid meal supplements but could not stand it any longer even though the original tumor had disappeared. His weight ran from 175 down to 141 by time of feeding tube use. The intense pain in his neck and ear initially regressed but subsequently returned. He has been on pain medications since as well as tube-feeding. After radiation and with the return of ear pain, an irregularity at the bottom of his tongue was initially thought to be associated with a radiation ulcer. However, possible tumor resistance, and so presence, could not be ruled out. Subsequent MRI and positron scan were not definitive although the PET showed a definite "hot spot". Biopsy was necessary for confirmation.

Last Friday morning the biopsy was performed which required tracheotomy. He is unable to open his mouth past ~1'. Frozen section of the biopsy indicated residual squamous cell carcinoma and although more histology will be done this is 99.9% definitive. Both he and I thought we would return home after the biopsy but he was admitted to hospital due to tracheotomy. He has been in since due to a UTI and some bacterial pneumonia from which he seems to be recovering. Initially he was unable to talk but has since gotten a cap to put over the trache which has given him some speech.

A CAT scan and an MRI were done over this past weekend. These are to determine if residual tumor is resectable by surgery. Initially we heard that it was and we were referred to ENT surgery for this. Last evening I had a chance to speak with the ENT surgeon who would lead this kind of operation. What I was hoping would be a small residual tumor from radiation which could be removed is not quite so. Although we need to have an in office consult he indicated the cancer had progressed significantly. It involves a lot of tissue area. Surgery will require removal of much of the base of his tongue as well as areas around below his vocal chords. This tissue will need to be replaced with tissue from his thigh. The replacement tissue will act as support without any organ function. That is to say he may be unable to swallow and tasting is questionable. He will need the trache for airway. He may be able to talk. It is a long involved operation lasting 8-9 hours. He is not a candidate for robotic surgery due to trismis (sp?) in his jaw. They will need to split his mandible to gain access. The surgeon indicated that this could not be done with any respiratory infection present. Although time appears to be of the essence here the risk for poor outcome with any infection present outweighs.

So the question becomes although surgery is indicated as the standard for care after radiation (which is 1st standard), how much of my brother is left afterwards. How sure can they be about complete removal, margins etc. If operation is not possible he would go back over to oncology for other possible immunologics. Check point inhibitors along with more EGFr antibody or in combinations have shown some benefit but I have been told these are to arrest progression. Surgery intends to cure. However, in 4 months will we be looking at significant oral compromise and debating immunologics? Should any of these be used while waiting to do surgery?

Our synopsis here is that it has taken way too long to get to the conclusion that all of the tumor was not eradicated by radiation. This is due to scheduling between departments through holidays. He also needed operation for resection of his sigmoid colon in Nov. which he has done well with. Right or wrong reasons aside, it has taken too long. So we feel we have to move on the remaining cancer quickly. But we are not exactly sure what to do.