Can I ask what length of time after a 80% brain tumour removal any of you had to wait for histology/biopsy to come back? At the moment we are on day 17. Did ring and ask 3 days ago and was told not all results were back as path were doing special staining now.
Dredging my memory to the first time I had surgery to remove my tumour I think it was about 3 weeks for the results. I've had a further debulking and the results came back faster. I think that the first time they are running a whole battery of tests and some of those, as I understand it, take several days to get a result on single result, and they are looking to rule in and rule out some options. By my second op they knew what the primary tumour was and therefore they were looking for what had changed, if anything. As its a first op 17 days may still be within the normal 'range'. There is nothing to stop you asking when they expect the tests to be complete.
I hope you get some news soon.
Some tumours have mixed cells so hard to identify.
My sons tumour at first was thought to be low grade but they weren't happy so sent sample for methylation testing which in the end came back as GBM4 Wild type Unmethylated.
The worst prognosis you can get.
We are on a horrible road ahead. Devastating disease.
Rang again today 21 days from crainiotomy. Still no histology back, said they are awaiting molecular markers. I have a bad feeling this isn't going to be good news when the results get back. Each day makes us worry more. Specialist nurse said awaiting molecular marker results and then it's going to MDT meeting.
I was told my biopsy result before I even was discharged after my op. I remember sitting there, in my dressing gown receiving the news, not completely taking it in actually. Sorry, that’s not terribly helpful to you I suppose but (as we all know), no two cases are the same. This was at King’s. My very best wishes to you X
Don't want to worry you but from the operation to FINAL test coming back was just over 6 weeks. It was really complicated and very rare.
The final test for methylation came back as tumour unmethylated wild type GBM.
the oncologist said it was transforming from low grade to GBM.
At first they told us it was Grade 1 but wanted to send biopsy to Germany. This came back as low grade or benign.then sent to USA for molecular tests.
Finally UCLH for the methylation.
Hope your story is different and that it s a low grade tumour.
really mean that. X
Today is histology result day, ty for all supporting me and my son with your answers, will let you know results asap.
The results where oligodenroglioma grade 2. He starts radiotherapy 2 September, 30 sessions over 6 weeks and then chemotherapy. He also has to freeze some sperm in case he ever wants children.
So sorry to hear your son is having emotional issues after the biopsy results.
It's quite common and he's probably looking things up on Google etc which doesn't help.
From hereon you will be focusing on good diet and exercise and reading up on supplements etc.
I found a really good forum in the States called
'Team Inspire ' at the American Brain Tumour Association '
Many people with similar experience ask and reply to queries about this devastating disease.
From now on it will be hospitals, tests , MRI''s and much anxiety about the slightest pain or headache. But it's grade 2 and that IS GOOD news. Hopefully sometime soon they will find a cure.
So todays we were informed the oligodendroglioma isnt grade 2 but grade 3, and we are skipping the radiotherapy and going straight to Chemo (PCV). So first hes going to St Marys Manchester to save a sperm sample, then next week the chemo starts.
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