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.

Michael welcome to OCF! Im very sorry to read everything your brother has been thru. We will do our best to help you with info and support.

Has your brother gone to another facility for a second opinion? If not, I would recommend trying to get him into a Comprehensive Cancer Center (CCC) asap! CCC's are our country's top cancer treatment facilities. Off the top of my head .... Moffitt, Sloan-Kettering, Johns Hopkins, MD Anderson are some of the best CCCs. A team based approach is used so all specialists are on the same page. CCCs are usually more up to date with things and better equipped to deal with complicated cases and recurrences. Im pretty sure I read a post saying MD Anderson does second opinions by email for patients who are far away.

Thanks Christine
We are at U Penn in Phila.PA. which I believe is CCC. Talked with surgeon this morning and surgery prospects are meant to be curative but by no means assured- 50/50 at best also with extensive oral disabilities. We need to talk with palliative care team while lungs recover. Maybe a second opinion on palliative care after we get first. I was hoping for any T cell receptor engineering against squamous cell but have not seen anything on that. Car-T was supposedly done at Penn. What a mess this has become.

Unfortunately oral cancer (OC) is not one of the more well known cancers. There has not been tons of money poured into research for OC like what breast cancer, skin cancer, lung cancer, etc receive. OCF tries to fund research projects and was a driving force behind much of what is now known about HPV thru Dr Maura Gillison's work. OCF is a very small nonprofit organization that depends on donations to keep running. We do wonders on a shoestring budget and wish we could do more to fund OC research projects but we can only stretch a dollar so far.

I still advise a second opinion for your brother even though he is currently at a great facility. Johns Hopkins isnt far from your area and may be a place your brother could go? Im sorry I cant remember which is a CCC in Philly, HUP or Fox Chase. Both are excellent facilities. I know people who have been treated at both with great outcomes.

I also recommend a second opinion as Christine B suggests. JHU is outstanding.

If you’d like another set of eyes, UCSF does a treatment protocol review (note this is not conveyed by insurance.)

I am so sorry that your brother is undergoing such an ordeal. Sending you both best wishes for healing and strength.