To say we are devastated is an understatement. From what looked like nothing, but we visited A and E anyway, went from being a mild stroke to a brain tumour in a week.
My hubby is 58, fit and healthy, never had a hospital appointment, let alone having brain surgery.
They have found signal change all over his brain with one area which showed up brightly on MRI. They biopsied that area using guided imaging and with a craniotomy as it was in an eloquent area. The initial results came back as high grade but they weren’t sure exactly what. He was then sent to oncology who confirmed it was a grade 4 glioblastoma with diffused area all over the brain.
He has started TMX chemotherapy last week - all of this has now taken 11 weeks from the initial scan - with no mention of radiotherapy to the area which has shown more brightly. He is really well in himself and once recovered from surgery has had no other symptoms.
The neurosurgeon showed us scan after surgery and eluded to the fact that he had debulked as much as he could, but the oncologist said it was a biopsy. The letter has finally arrived from the surgery 10 weeks again and no mention of debulking in the letter. We are very confused and worried and starting to feel like we should ask for a second opinion. By the way, the part of his tumour they biopsied was also unmethylated. Although the oncologist admitted that it could even be two different tumours and the overall signal change everywhere in his brain could even be a lower grade.
We are both aware that his prognosis isn’t good but we still feel like we should explore all avenues.
Does anyone have any advice or experience of second opinions as we don’t want to delay any treatment any more than it already has been.
