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Hi there everyone, firstly, I'm very sorry to be posting here. I'm sure many of you have gone through this conversation with the oncology team, and that it is not an easy conversation to have for many of us.
My father is in the process of being diagnosed with a potential GBM (preliminary diagnosis) at 49. We are waiting for the confirmed diagnosis, however the oncology doctor has told us that we are waiting for the methylation test before we can know any more. Unfortunately, when he explained this part we were all a bit stuck on the thought of the GBM as, as we are all aware, it is much more aggressive than the alternative grading.
Unfortunately, I am away next week when we hope to have the firm diagnosis (however I am aware these things take time), and so my father will be calling me to let me know more, and either way the results go, I do not want to probe with questions at that time, or get the wrong end of the stick. I completely understand this should be a question for the oncologist, however I hoped that someone may be able to provide a little light on the situation before we next meet with him.
This has all come about very quickly, seizures on the 5th June, surgery then 21st June and he is due to start radiotherapy tomorrow.
I hope this is the right place to ask this question, I do apologise if not, I am just feeling a little lost in trying to understand and prepare for this in terms of treatment outcomes as well as prognosis.
Thank you all,
Hi A52341 and welcome to the online community
I'm very sorry to hear that it looks like your dad is going to be diagnosed with GBM. It must be a terrible shock for all the family.
I can't answer your question about what a methylation test is but I noticed that your post had gone unanswered. I typed it into the search facility in this group and while it didn't get any recent hits in this group it did in the GBM group. It might be an idea to join that group and post your question there. Clicking on my link will take you there if you want to join.
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From what you have said it is very likely to be a GBM or Grade 3, otherwise they would not rush in to do radiotherapy. I do not understand why you do not have the biopsy results yet, but it is very easy to ask to get a copy (well your dad can). If you did have the biopsy results, as well as the MRI report, it is very easy to know what exactly it is you are dealing with. Of course the neurosurgeon and/or neuro-oncologist ought to have a sit down with you/dad to explain everything, not only general information on GBMs, but also the particular details of your dad's case.
The methylation test is a DNA test that in layman's terms tells you how effective temozolomide might be against the cancer. Temozolomide is the number 1 chemo-drug for gliomas and if you are un-methylated it usually means it will not work very well. But it is not black and white, it is expressed in a % and the higher the % the better off you might be.
There is no much else for gliomas unfortunately, except CCNU which is older and still used when temozolomide is off the table. In the UK it is given as PCV, a combo of 3 drugs one of which CCNU. PCV is very harsh and not many patients will manage to complete the course.
Outside of those there are studies and a couple of clinical trials on alternative treatments, one is a combo of temodar and CCNU https://academic.oup.com/neuro-oncology/article/19/suppl_6/vi13/4590343
There are more studies and trials, you go to research.
As your dad is already deep in the system you need to get an all round understanding of what the future holds part of which is what they will do to him. My guess is 30 days radiotherapy (+low dose chemo) followed by 3 or 6 months of chemo. If he is "methylated" they will give him temodar, if not then probably PCV. It will also depend on his general condition as he goes through the rounds.
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