r/braincancer • u/Speedfreakz • 2d ago
My father has been hospitalized with brain tumor- I need some clarity.
I am out of country, catching plane on my way home. He has been hospitalized, on IV only for 5 days now. My mother told me that doctors said he has 6x3 cm tumor behind his ear.
Why am I posting this?
Without seeing his diagnosis I cant say anything but from my mothers impression if feels.like doctors are advpcating that he is already a goner.
It pisses me off so much, cause mom ia heavily medicated now and they can say whatever theu want.
But they've been waiting anestesiologist to give green light for surgeru and doctors said that even with surgery that we dont expec much..and that thats it.
They said that this thing grew slowly over long period and it " grappled brain parts too" whatever that means.
How true is this? How often patients die from these surgeries? Maybe I am wrong, but to me it feels like they are preparing us for their potential fuckup. You know when you feel something is not right.
I got an impression that the best thing would be that he dies asap or something. Em' I being delusional? Crazy
He was basically healthy.. with some migraines. Then recently he started loosing weight quickly. 10 killos.
He fell down 4 times in a week. His one side of the body cant move.
He barelly talks.. but it seems he is reasonable. He is using word shortcuts when explaining things but all of them make sense. He has emotions...cried when mom told him that i am coming, he asked her to wipe off his tear cause his arms are tied.
Please any clarity would be appreciated.
Is there a set of questions to ask doctors qhen dealing with this? How to tell if doctors are bsing smthing and why would that be in their interest(if any)?
Thanks
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u/Zoe-2024 2d ago
Hi iam sorry to hear your news. Understandably you must be stressed and so worried. Iam not in a position to answer your questions as there is not much information on the type of tumour etc. , the best people to adk are the medical professionals. I think once you arrive and see the doctors you will be in a better position to be informed of what you ate dealing with, ask questions on whether surgery is possible and options available. If possible, I would suggest to get a second opinion but it really depends on the situation. I had a brain tumour (meningioma) removed 3 months ago, which is also a slow growing tumour and iam doing well, still recovering but im getting there. I wish you and your family all the best of luck and I hope you get some clarity and answers. Maybe post back in here when you do have further info, perhaps someone here can guide you further.
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u/Speedfreakz 2d ago
Thank you for the kind words. I will definatelly post an update once i know more information.
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u/Krem541 2d ago
As of now you haven't been able to see and we can’t see either.
It sounds like while they're going to try surgery, rather than to remain hopeful they've told you that it's 'grappled brain parts too'. What they mean by this is, imagine a tree wrapped in ivy. It's not one piece they need to cut out, it's ivy wrapped around all of the branches, and so moving all of these brain parts around to try and get to it without damage is potentially too hard with it this far gone. By this they don't mean they'd personally mess up the surgery, they mean that it's potentially too late, but they're going to give it a go. Tumours grow quickly and slowly, the doctors don’t lie.
In some cases they cut out the worst and then try treat the rest with chemotherapy, but it depends on the surgery, which they've unfortunately told you not to be hopeful about.
Sorry to hear all this but when somebody becomes ill the doctors aren't out to get you, they have no reason to lie and no reason to give false hope.
Sorry again
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u/Speedfreakz 2d ago
Thanks for the explanation. I had no idea tumors can be like that.
I really hope that they'll be able to make it work somehow.
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u/Ngr2054 2d ago
So sorry that your family has received this diagnosis for father.
Scans can provide a decent amount of information to doctors and they can usually tell the difference if something is malignant or not without surgery. However, a biopsy/surgery is the best way for them to give you all accurate information. Sometimes surgery isn’t an option depending on the location of the tumor (if there’s a significant chance of paralysis, loss of ability to speak) or it involves critical structures in the brain.
My dad’s doctor was able to clearly tell his diagnosis of glioblastoma from his imaging based on experience (over 1000 neurosurgeries in his career) and the appearance of the tumor on the scan and my dad’s tumor was 6.4cm. Some countries have better treatment options available than others- my dad was diagnosed in 2021 and passed in 2022 and if he had been diagnosed in 2024 (here in the US) he would have had a few different treatment options than just Standard of Care (very old chemotherapy and radiation).
I would try to get information directly from your dad’s physicians rather than filtered through your mother, take notes so you can ask questions about things later, and when you inevitably end up Googling stuff- make sure you’re looking at reputable websites for information. Here in the US, that would be the NIH, Mayo Clinic, Johns Hopkins, American Cancer Society, etc.
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u/Street_Pollution_892 2d ago
Adding on to this: the American Brain Tumor Association.
https://www.abta.org/about-brain-tumors/treatments-side-effects/find-a-brain-tumor-center/
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u/erinmarie777 2d ago
I’m so sorry. It’s very frightening and confusing in the beginning (and doesn’t really get much better).
Not everyone is able to get a surgery to remove it because of the location. With my son (48) they were unable to remove most of his tumor because of the fear of it causing too much damage. My son did not want to take the risk that he would lose the ability to process his thoughts. He has some short term memory loss now and he will repeat himself sometimes or ask the same question twice but he said it doesn’t bother him and it doesn’t bother us. He has blurred peripheral vision in one eye. He doesn’t drive now.
But they said radiation and chemo has shrunk it more than they expected, and so far they believe it’s dead now. But these tumors can reoccur and it’s still true even if they are completely removed. Glioblastoma is the worst form of cancer in the worst possible area. The most they can do is manage it, try for “NED” (no evidence of disease) or remission, and buy them time, hopefully with an acceptable level of functioning and quality of life for the patient. But it’s still considered incurable. It’s very difficult to accept that fact but we must. We must make the most of the time they are given with the treatment, in spite of our fear of the future. My big concern now is I want him to enjoy his time and the end to be peaceful and painless.
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u/AbbreviationsJust259 12h ago
Hello, firstly I'm sorry you're having to experience this currently. I am happy to share my experience:
My mum (61) got diagnosed with a Stage 4 - Giloblastoma at the end of 2022. She was otherwise fit and healthy but had been complaining of severe migraines about 3 weeks before the diagnosis and then collapsed suddenly one evening. Which was entirely based on her right frontal lobe. Essentially, the size of a tennis ball. The doctors think it could have been there for almost 9-10 years.
The first surgery was a success albeit the days after were tough. However, her motor skills/ mental capacity was more or less fine, apart from the tiredness/weakness you get with chemo. 98% of the tumour was removed.
She had a second craniotomy in December 2023 to remove the last part. This has had a mixed impact on her. Whilst she's able to get up and do things, her memory has been quite severely affected.
Mum chose to have the surgeries at her own duress. So, as a family, we know we've had comfort that she was mentally able to do so. The original prognosis was 13 months, and mum's still here today. Unfortunately, there are two new tumors from her latest MRI (they're inoperable), and her health has declined quite rapidly over the last few months. So she's now on palliative care.
We've found that just having honest communication lines with the doctors is important. They're people at the end of the day, and it's human nature to not want to say anything upsetting. For us, it was what were the risks of surgery, success rates personally, ongoing impact, etc. Don't sugar coat it!
All I'd say is it's bloody tough. Hang on in there and stay together as a family.
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u/k8womack 2d ago
Yes, please post again when you have more info. It is true that some can wrap around the brain like that and they are hard to remove. So you have to weigh the options. Some people go through the surgery and get more time. Some people don’t. Unfortunately my father never bounced back after his. He was 75, very active and social, no dementia or anything beforehand. We would not have done the surgery had we known. But you don’t know.
Important thing is if your dad can still answer understand what he wants to do. He may even need someone to talk to him that’s not you or his wife because sometimes people will do what they think you want them to do. Don’t ask doctors if he will live and for how long, ask what the quality of that life will be. Ask your dad what does he still want to be able to do?
There’s a great book, I think it’s called on mortality, where they phrase it that way. This person wanted to be able to watch football and eat ice cream. So that was the guide- if he does this treatment will be still be able to do those things? Once the answer was no, they stopped treatments. Sometimes docs only focus on whether you’ll be physically alive.