Anyone had the oncologist tell them that the post chemo/radiotherapy ct scan had shown unexplained "patches" on the surface of the the brain?
Worried and a tad anxious..probably overthinking too.
My husband has a grade 4 GBM. He had it debulked in Sept, we did the 6 weeks of chemo/radiotherapy and two weeks ago had the post treatment ct scan done. It wasn't his usual oncologist - yet another stranger- who said the main tumour looked as expected but there were unexpected "patches" on the surface of his brain. He said he didn't know what they were and was taking the scans to their weekly MDT last Wed.
We have another video call lined up for Monday but all of this is preying on my mind.
I'm bitterly disappointed in the level of support we've had - I've had as his primary carer - since we were handed over to the cancer hospital. I feel quite isolated here and feel as though getting answers is way more challenging than it should have to be. Yes, I can make excuses because of Covid etc but at the end of the day, we still need to know. The oncologist had had the results for over a week - plenty of time to consult a neurosurgeon for their clinical opinion.
This journey is hard enough without getting vague answers.
Sorry - kind of letting off steam but I'm beyond frustrated. My husband's communication skills and understanding have been compromised as a result of the original tumour and he's "oh it's nothing important. It'll be fine. He said the tumour was looking as he expected it to look." He's in his own wee bubble here and can't understand my concern. I keep hearing the neurosurgeon's words from when we saw him post- op back in Sept and my gut instinct is saying these "patches" spell bad news.
Any words of guidance and reassurance or explanation welcomed with open arms.
Wee Me
x
Hi LC 50
Frustrated doesn't begin to cover it today! We sat in the "online" waiting room for an hour waiting for the video call with the oncologist then the whole system crashed. He called a few minutes later and basically said the MDT meeting that included the neurosurgeon who operated on him last Sept couldn't decide what these patches were. He said there were 3 options - bleeds, infection or tumour activity. No shit Sherlock! I'd worked that out for myself! So now we get to wait 4 weeks until they do a repeat of the scan then a further 2 for the oncologist appt. Less than impressed today. I know its not an exact science but to be fobbed off a second time really didn't help but c'est la vie!
In general he's doing ok. Physically he's still really fit which is a good thing as it means he can still run for now. Running has aggravated the blood clots in his lungs so we've an appt on Thurs at a hospital over an hour's drive away to get a ct scan done on them. That will be hospital number seven we've attended. Think we're doing an NHS Scotland tour!
He's declined all further chemo so it's just time regardless of what the scans show.
Mentally some days are better than others. His reading ability is all but non-existent now which he finds very frustrating. I can see a dip in his cognitive abilities but I guess that's to be expected. Speech etc is worse after he's exercised or if he's been chatting on the phone. Emotionally he's had a few dark moments which are totally understandable.
Things could be a lot worse I suppose.
How are things with you?
love n hugs
Wee Me xx
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