my partner (26m) had a grade 2 oligodendroglioma idh mutation 1p19q co deletion removed in May 2024 after being discovered from a seizure in February 2024. His neurosurgeon at the time said he removed atleast 98%. His scan in March 2025 & October 2025 were both stable with no changes just the same tiny bit of abnormal signal in the resection cavity that remained the same. His surgeon has said to us it could either be residual tumor or scar tissue and wouldn’t know until years of scans to monitor the growth.
He had his 6 monthly MRI last week and doesnt have a call with his neurosurgeon until the 18th of June to go through it.
Well today we had an appointment with his neurologist reading his medication review (it ended up being with someone else, I think a junior neurologist) everything is good in terms of seizures, they’ve gone from being 1 minute long to 10 seconds and now he only twitches rather than his arm go up in the air & shake etc). But then he pulled up my partners MRI scan and I tried reading the screen and saw something along the lines of progression. Instantly I was worried as everything had been stable and ok. I asked the neurologist but he didn’t really say anything, then said he will get my partners actual neurologist to come into the room. We then went through the scan and he said there is a slight change from the previous one last year around 1mm and is still low grade. He didn’t really give anymore info and said to speak to his neurosurgeon.
Obviously we all know these things can grow back etc it just really shook me up, especially as we was hoping it would be scar tissue.
Any similar experiences or advice?