Inconclusive scans

Hi Lucylocket79, so sorry about your brother. Yes, it is very common for scans at this stage after radio/chemo to be unclear. Sometimes they'll give you an MRI scan with perfusion / spectroscopy to give a clearer picture. The reason is that there can be pseudoprogression at this stage, where the brain looks as if there is tumour growth, when in fact it is just reaction to treatment (which can be a good sign). Perfusion / spectroscopy will show whether there is actual tumour growth rather than just treatment change. If your brother didn't have that kind of scan, they'll probably watch and wait - if it's gone down by the next scan, it was probably nothing to worry about. I hope that's the case with your brother.

Good luck. 

Thank you, that is really helpful x

Not in my experience, no. i an now 10 months post surgery and each scan, from the one right after to the last one in March has been perfectly clear to the doctor who points out where the tumour was, and whats now dead cells from the treatment. I have my final one on Monday and am expecting to now be fully healed although I dont see the doc until July. Best wishes to your brother

My husband’s Oncologist explained that a scan cannot be entirely clear because of oedema and scarring. 

Thank you, long may the clear scans continue for you ️

Hi Lucylocket79

a warm welcome to the group. Sorry to hear about all that your brother is going through. Life's cruel.

I supported my late husband throughout the 3 years of his GBM journey.  Like you've experienced, we had several inconclusive scans along the way. The standard protocol seems to be to do a maintenance scan every 3 months. This is a double edged sword. Scanxiety becomes real. Obviously you want the scan to still show no regrowth or no fresh growth but inconclusive scans are frustrating. We also had one instance where the dye didn't run through right so the scan was useless and had to be repeated. One consultant also explained to me at one point that the gap between the images can vary from machine to machine too depending on the setting. We're talking tiny measurements but if the gap is too big it could in theory miss some important image. Long and the short of it , scans can be a bit of minefield. G found them very stressful and at one point asked for a 6 month break between scans. I guess what I'm trying to say here, is be led by what your brother wants and can cope with. A GBM journey is an emotional rollercoaster ride for all involved.

We had periods where as a family we could see subtle changes in G day to day yet the scan would be fine.  That brought its own frustrations because you start second guessing yourself about the changes you are seeing in behaviour etc. 

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now I'm sending you a huge virtual hug and lots of positive energy. Take this journey one step at a time and please try not to fixate on scans. Focus on spending quality time as a family. This journey will run its path no matter what any scan says at  the end of the day. Apologies if that sounds harsh.

love n hugs

Wee Me xx

Thank you ️xx