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?

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?

Hi Bowser,

Welcome to OCF forum. I am so sorry for what you and your husband are going through. I saw a question about handling mucous and this one about general support following treatment. The answers will depend on the diagnosis and treatment. Please advise where the cancer was found? what stage? surgery? If so, scope of surgery? radiation treatment? Chemo?

For me, I had stage 4 cancer on my tongue, they removed half of my tongue, all nodes same side of neck, rebuilt my tongue with flesh from my forearm, got a trach tube for breathing, nasal feeding tube until I healed enough to eat through my mouth, then about 6 weeks after surgery, I got radiation treatment.

I will offer my experience with mucous management. Mucous was an issue mostly during my stay at hospital as I recovered from surgery. Nurses would come suction out the blockage, through the trach hole in my neck, to clear my throat as needed. Sometimes multiple times an hour. By the time I went home, in my second week of recovery, they gave me an at home suction machine that worked fairly well but I was no longer choking on it. AT home, I would suction the back of my throat carefully fairly often. They provided me the small tubes etc to deal with this at home but, again, at home it was not nearly as bad. I taught one of my sons and wife what the nurses did in case I had major blockage like in the hospital.

Hope this helps. Please keep reaching out with questions.

Best,
Nels

What to do, remove all the time when it grows up or wait and see approach?

I am new to this forum on behalf of my husband. Looking for ideas and suggestions to deal with the aftermath of oral camcer.

Does anyone have a stratergy to clear mucus from my husbands throat and moith?

Did you completely removed it?