u/Otherwise-Relief5963

• April 2026: MRI found the tumor + biopsy confirmed squamous cell carcinoma (moderately differentiated)
• May 4 – June 16, 2026: Completed curative-intent chemoradiation:
• Radiation: 66 Gy to the tumor + nodes (IGRT technique), 30 sessions over ~6 weeks
• Chemo: 6 cycles of Cisplatin, given concurrently with radiation
• Side effects during treatment: skin irritation, mucositis (mouth/throat inflammation), and pain — all rated moderate (Grade 2)
• June 16, 2026: Treatment completed; discharged with advice to continue swallowing/mouth exercises, skin care, salt-water gargles, and follow up with speech/swallowing clinic
• No surgery has been performed at any point so far
• Aug 8, 2026: Follow-up MRI showed strong response to tumor and lymph node both shrank significantly, though a residual area remains

The tumor went from ~5.7 cm before treatment to ~4.3 cm The lymph node dropped from ~3.1 cm to ~1.3 cm — over a 50% reduction.

What’s confusing me:
1. Despite the “no restricted diffusion” finding, our treating radiation oncologist examined the patient directly and says this looks like residual disease, not just healing — largely based on direct exam (visible ulcer) plus two new symptoms: a significant bleeding episode during treatment (10 June) and a new small blood-tinged clot in mid-August, plus return of peak-intensity referred ear pain (present at diagnosis, resolved during treatment, now back).
2. He’s recommended a PET-CT, but it’s being scheduled at ~61 days post-radiation — from what I’ve read, the standard guidance is to wait at least 12 weeks (84 days) to avoid false positives from radiation inflammation. Curious if others have had PET-CT done this early and how reliable it turned out to be.

What I’m hoping to understand from this community:
• Has anyone had a similar “large ill-defined residual area + negative DWI + but doctor still says residual disease” situation? What did your PET-CT / biopsy end up showing?
• Any experience with PET-CT done earlier than the typical 12-week mark — how did your doctors interpret it?
• If your case ended up needing salvage treatment after chemoradiation, was surgery considered, and what determined whether it was an option?
• Any general perspective on new bleeding + returning referred ear pain at ~2 months post-chemoradiation — was this mucositis/healing in your experience, or did it turn out to be something more?

I’m a 42-year-old man who was diagnosed with squamous cell carcinoma (SCC) at the base of my tongue in April.
My initial MRI showed a large tumor at the base of the tongue that crossed the midline (about 5.7 x 4.8 x 4.5 cm), with involvement of nearby tongue muscles and cancer spread to lymph nodes in my neck. A PET-CT showed the primary tumor and affected cervical lymph nodes, but thankfully there was no evidence of distant spread to the lungs, liver, bones, or anywhere else.
Treatment:
● Treatment was given with curative intent.
● 30 fractions of IGRT radiation.
● 6 cycles of Cisplatin chemotherapy.
● Radiation was completed on 16 June 2026.
During treatment:
● My weight dropped from 120 kg to 100 kg.
● Severe difficulty swallowing.
● Thick mucus that required frequent spitting.
● Mouth and throat ulcers.
● Significant changes in my speech, which also became painful.
● Ear pain after eating or swallowing.
● Persistent runny nose.
A CT scan was done midway through treatment because of the significant weight loss. My oncologist later told me that the tumor appeared to be shrinking and that most of the swallowing difficulty was likely from radiation-related inflammation rather than the tumor blocking my throat.
Near the end of radiation, I suddenly had an episode of coughing, spitting, and vomiting multiple blood clots along with a significant amount of blood. I was evaluated in the emergency department. My vital signs were stable, the bleeding stopped on its own, and no active source of bleeding was found. After review, the oncology team felt it was most likely related to radiation injury or ulceration rather than active tumor bleeding. Radiation was briefly paused for observation.
Currently:
● Radiation is completed.
● No further bleeding since that episode.
● Still dealing with thick mucus, frequent throat clearing, swallowing difficulties, speech changes, and mild ear pain after meals.
● My doctors remain optimistic, and the treatment was given with the goal of cure.
Questions:
1. How long did thick mucus and constant throat clearing last after radiation?
2. When did swallowing start improving?
3. Did you have ear pain, and how long did it last?
4. How much weight did you lose, and how quickly did you regain it?
I’d really appreciate hearing from anyone who has been through curative chemoradiation for base-of-tongue or oropharyngeal cancer and is willing to share their experience.