I’ll try and keep this brief. My 88yo mom had inferior maxillectomy with free flap reconstruction surgery last March for OSCC, stage 4. Recovery has been difficult, but she is amazing and doing ok. Top notch care. She did not have precaution follow up radiation because they felt her body couldn’t handle it and they were confident they removed the tumor. Clear margins, no additional tumors were found in lymph nodes and 3-month follow-up scans all look good! But I’m still worried about recurrence. She has oral lichen planus which causes her mouth to be extremely raw and inflamed, so it’s hard to know whether her newest issues are simply from that. She has canker type sores constantly and can barely eat and treatment not helping. So my questions are… should she get a biopsy or another scan? How often after cancer treatment should one get scans - every 3 months? 6 months? Am I jumping the gun? She has seen an ENT doc, prosthodontist, and oral surgeon about the sores but none seem to think the sores are cancer.

Hi Jam1411,

Welcome to the OCF forum and I am so sorry to hear of your mother's cancer. Sounds like surgery went well. I had surgery and follow-up radiation in early 2020 for stage 4 SCC on my tongue and in one lymph node. As for how often to get scans and evaluations, mine were approximately every three months for the first couple years. Now, I am nearly five years out. The last few years have been every six months.

The doctors should be able to help with the sores with some medication, mouth rinses, etc. Is pain in her mouth the main reason she has trouble eating? Getting enough calories and staying relatively active are key. Plus, making sure to have a social life and time with loved ones. I found it intimidating headed into the general public with a significant lisp, etc. Restaurants early on were especially hard. It was hard enough to eat much less be social and eat in public. But, I kept trying and practicing, and using lots of napkins! Have you considered a feeding tube? If she can eat enough calories normal, I think everyone here would advise to keep fighting for that. Is she well enough to travel out to social activities?

Biopsy? Hmmm. Reading your note, it appears you have seen multiple doctors about these issues and all seem comfortable. But, nobody knows your mom better than herself and her caregivers (you!). So, if you are still worried, I would keep pushing for one.

Thanks for posting here. Please keep us up to date.

Best,
Nels