Hi all - I'm the daughter and patient advocate for my dad who has stage IV OSCC in the left cheek. History of smoking (quit 40 years ago), and alcohol use. Other than that, completely healthy 81 year old on no medications and very active.

He was diagnosed in June 2024, had tumor removed, neck dissection, flap, and reconstruction on July 15. Surgery went well, margins were good, no lymph nodes. Healed well. Delayed start to radiation due to error getting radiation shield from dentist associated with his original provider (we complained aggressively as this is unacceptable).

Turns out he had a secondary tumor growing at the border of the previous site right after radiation finished. We are confused as to how this was missed. Had post op MRI on 12/20, they called 12/23 to say he was in the clear. Post op oral exams noted nothing until January 3rd, when they noticed new lesions, took a biopsy and exact same cancer. Stave IV moderately differentiated, tumor grows rapidly. Radiologist re-read the MRI and realized they missed the cancer. Of note - Tumor growth seemed to accelerate rapidly after he started lymphatic massage.

I am so angry as this delayed us starting the next stage of treatment. I don't understand how when he went to the doctor weekly since October, either for speech therapy, swallowing therapy, lymphatic massage, or whatever - that no one thought the swelling on his face was a tumor or worth checking out. It seems from reading this thread that it's really hard to correctly diagnose oral cancers?

Options for care are either surgery (which we declined as he would have a poor QoL and he might not handle it as well as he first did), quad shot radiation, or chemo/immunotherapy.

We opted for chemo/immunotherapy as his PdL-1 level is %50 and we are hoping if the chemo can slow the growth of the aggressive tumor - Keytruda can extend his life, so long as he doesn't have any life ending complications.

I am trying to help him manage his expectations for the treatment - we are expecting joint pain, fatigue, skin rashes/itches, diarrhea, nausea. I know to be on the lookout for fevers, vomiting, aggressive coughing, etc.

Is there anything else we should think of at this time? Any alternatives that may help? Ketogenic diet or fermented foods etc?