Hasty glioblastoma diagnosis - what do you think?

Yoddleman
Regular Visitor

Hasty glioblastoma diagnosis - what do you think?

Age: 68
Sex: male
Height: 170cm
Weight: 75kg
Race: caucasian
Duration of complaint: around a month
Location (Geographic and on body): Poland, left side of the body
Any existing relevant medical issues (if any): diabetes type 2, atherosclerosis; deep vein thrombosis two years ago
Current medications (if any): metformin for diabetes

 

 

Writing on behalf of my grandpa. For the past few weeks, we've observed slight change in how operable his left hand and leg became - he would knock something over more often in the house when reaching for something (like a mug, a plate), his gait when walking at home became more unsteady (for example hitting the door frame with his arm or making the corners in a wider manner than he used to) and his walking up and down the stairs became way worse. We attributed a lot of it to some muscle problems, especially since he said himself that a lot of his walking and stairs walking problems are because his hips are kinda sore. He also started having problems with small motions with the hands (like buttoning up his shirt or fastening the seatbelt) and getting in and out of the bathtub on his own, though other than that, there were no changes with the behaviour, mood, reflexes, memory or anything

Since it did not really get better and the constant knocking of stuff became even more visible, we went to the neurologist with him. After careful examination and interview, the neurologist said there is a slight paresis on the left side of his body which could mean grandpa suffered from a ministroke and directed us to the hospital for examination. While there, grandpa was first examined with a non contrast CT scan of the head, then a couple of days later with blood tests, intravenous contrast brain MRI, chest RTG and abdominal ultrasound. After all of this, the doctor at the hospital decided that all this "gives rise to the suspicion of stage IV glioblastoma" and that grandpa should undergo a brain tumor surgery within the next weeks. He was given Dexamethasone 80mg/day, pantoprazole, potassium, and dalteparinum injections and then they discharged him from the hospital, telling to continue taking those meds at home until they call him that they can take him in again, for the surgery this time, after which grandpa will be given radiotherapy.

[Here are all the MRI photos](https://drive.google.com/drive/folders/19M6L0uEJWq65Wqdvy0bIxAMJiPvm0TT5?usp=sharing) and [here is the chest RTG](https://drive.google.com/file/d/1bgyQrumEpNPH4qKYTinZ73fg7u-RU33s/view?usp=sharing). The papers we got from the hospital read that (all translations mine) there is nothing wrong with the lungs and that the ultrasound was "conducted in a limited manner" due to coronavirus circumstances but that it "did not find anything evidently canerous within the liver, kidneys or solid organs". As for the description of the MRI, it says that the "parieto-occipital border of right brain hemisphere shows a lump change the size of around 64x48x53mm (APxSDxCC)" which "suggests primary cancerous change". All the diagnoses also read that patient's "general condition is good" which is true cause grandpa is completely normal, like he always used to be, the left side motorical problems being the only ones. Also, he's never had any cancer-related problems or the history of cancer in the family.

So this is what we know for now. What makes us a little cautious with the hospital is the fact that the doctor in charge of grandpa there was, well, of doubtful reliability to say the least, throughout his time there. He changed his diagnosis (which he was "sure of" each time) at least twice, said different things to grandpa than to us (many of them being completely terrifying visions, only to change them a day later like they were nothing), scheduled calls or meetings with us and grandpa for times when he wasn't at the hospital and so on - not something you would expect in a serious situation, to cut a long story short. We're also cautious about their diagnosis because of the constant verbs like "suggets", "gives rise to the suspicion" and so on - there is no _one place_ in all the docs that clearly says what their diagnosis _is_ as opposed to what is _suggested_ it is. And finally, the very same doc told us right the first day, after taking grandpa to the hospital and them doing a non-contrast CT, that it surely was a brain metastases, most likely originating from the lungs, causing both our and grandpa's despair, only to say a few days later - after the MRI, RTG and ultrasound - that it is primary, after all, but "these are way harder to treat than if it really was a metastases". This caused us to take what he says with a heap of salt and to seek second opinion.

Of course in the upcoming days we'll also take all the papers and photos to a neurologist to consult but since time is pretty crucial right now (nobody knows when they'll call from the hospital to take grandpa in for the surgery), it'd be good to see other opinions online, too. What are your thoughts on that? Would you say that the diagnosis seems OK, considering all the information and photos? Would you also say that surgery and then radiotherapy seems like the best idea? What are your thoughts on the prognosis of all of this? I'm not dismissing the whole diagnosis of course cause the photos seem to indicate that something is there, even for a layman like me - but I'd just like to hear other people's opinions after the shady practices in the hospital, I hope you understand. Thank you a lot in advance for everything you share about your outlook on this case.

1 REPLY 1
Anonymous
Not applicable

Re: Hasty glioblastoma diagnosis - what do you think?

@Yoddleman 

It can be quite a shock when there is a diagnosis of a life threatening condition especially when communication has not been optimal.

 

When a tumour is small a patient can present with mild symptoms and these increase as the tumour grows and are variable from patient to patient, certainly the neurologist sending your grandpa to the hospital for further investigations was wise. Having the scans and any blood test results with you when you return to see the neurologist will help them to give you a further opinion with the additional information now available.

 

In relation to medical imaging, radiologists frequently use the terms "suggestive of ..." or "in keeping with ..." as a CT or MRI scan cannot give a definitive diagnosis on a mass lesion although contrast enhancement does help define features such as if the lesion appears cystic or solid etc.  CT and MRI help differentiate the nature of lesions in different ways.

 

Pathology will give a definitive result.

 

I am afraid the questions you are asking are well out of the scope of most carers as we are not medically trained and rely on the expertise of doctors on relation to the care of our loved ones. I have found it useful to write down the questions or concerns we have, there are respectful ways to ask for clarification.  I  not sure what the situation is like on Poland, here in Australia a dedicated family member/ primary caregiver with the patients consent is able to attend doctors appointments with them. 

 

Please do continue to reach out for support as the path ahead will likely be emotionally, physically and spiritually draining. 

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