My dad was diagnosed with SCC base of tongue last year. He completed 35 radiation treatments + 2 high strength radiation treatments. He also completed 7 rounds of chemotherapy. During treatment, he was rx'd oxy-acetametophine and a fentanyl patch. During chemo, he also received IV fluids and steroids. His pain started to subside during treatment. He completed treatment in November of 2025, and after this he only dealt with minimal pain, thrush, and tongue burns.

Around February, he felt another bump and off for a PET scan and biopsy he went. Scan showed color and biopsy showed infection. He was treated with an antibiotic and sent on his merry way. We thought that he was in the clear as far as pain as he was still on the same prescribed pain medicines. However, post biopsy he has been in a ridiculous amount of pain around his previous cancer area. They rx's gabapentin to see if maybe it was nerve pain, and that hasn't worked along side his current pain regimine.

I have called and called for a visit with his oncologist, all they do is continue his normal pain medicine or increase the gabapentin (he is currently up to 300mg/3x a day). It doesn't seem like they are taking his pain seriously - his radiation doctor was the one who rx'd everything in the first place, but they discontinued care once his radiation was finished.

We frequently follow up with an ENT, and he fully believes him about the pain (I do as well, I see it daily.) Since the oncologist wouldn't fit him in for a visit, we ended up at the ER once a week for the last 3 weeks just so he could get a little relief from a score of 12 to a 7. His ENT saw him 2 weeks ago, and referred him to a Head and Neck surgeon for a deeper biopsy and possible surgery. We had the biopsy today, so we are awaiting the results. It seems like every month is a higher level of pain since treatment stopped. I feel as everything that I read, everyones pain gets better, so I can't help but wonder why his keeps getting worse. We can't get into the local palliative care, I feel like we keep hitting roadblocks and he is loosing hope every day. I don't want him to give up this fight solely because of the pain that we can't get anyone to focus on. Just last week an NP oncologist advised she was going to send in a different prescription, and sent in Narcan instead. HE IS A CANCER PATIENT NOT A DRUG SEEKER. God, I just want to scream at them, but I am here instead. We were referred to a pain clinic, but they advised that what he is currently on is about all that they can prescribe, apparently in our state, oncologist have more lee-way than a pain clinic does when it comes to prescribing.

-If the biopsy shows cancer, they will remove it surgically this time. If it is necrosis, they think hyperbaric oxygen therapy will help with the dead tissue pain. Hopefully we will know more this week from the surgeon, but if not we follow up with oncology in a week and if we are at another crossroad, I might actually scream.

Is anyone else on this painful road post-treatment? Has anything worked for you specifically? Did your pain get incredibly worse before it ever got better? Is there a light at the end of the tunnel?

Signed,
A daughter who is just trying to help her dad and is feeling defeated. Thank you for reading this far.