Support resources for families dealing with cancer and other serious illnesses

Emily Edwards19 said:My friend isn't doing well...😢
She cut her beach trip short and headed back home two days early because these headaches are just brutal. She hasn't even stepped foot outside the house for a couple of days. The last time I tried calling her, she couldn't even pick up the phone, so I ended up having to talk to her mom instead... It’s honestly terrifying. It feels like everything with her just spirals out of control so incredibly fast.😢

😢
She needs to get to the ER's neurology department immediately. I’m genuinely worried that the metastases might have spread to her brain. She needs an urgent CT scan right away, and if there's any swelling, she absolutely has to start anti-edema therapy. If they don't get ahead of it, that high intracranial pressure could easily trigger a coma.

Angela Wright said:😢
She needs to get to the ER—specifically neurology. I'm honestly terrified that those lesions might have spread to her brain. She needs an emergency CT scan right now, and if things have progressed, she’ll need anti-edema therapy... otherwise, that high intracranial pressure could literally send her into a coma.

What you wrote in bold is probably spot on😢
The tests actually showed there's "something" going on in her brain, and I'm scared it's nothing but bad news... I don't get why she didn't just head straight for an MRI or a CT instead of heading out to the coast... though, I guess I get it—being stuck at home or in bed all the time is exhausting, so maybe she just needed a change of scenery... plus, she'd been feeling totally fine lately, like, really good!!!

I found out this morning that she actually made it back home last night, but she isn't doing well. I haven't called her yet... I'm just scared... but I'll call her soon... I'll ask specifically about her blood pressure, since I don't even know what her baseline usually is..
If she even picks up at all😢 uhhhh

Thanks for the advice.... I'm going to check in with some of her closer relatives about what you told me.... I just really hope they rushed her to the ER the second they realized something was wrong!!
This is such a mess...😢

Emily Edwards19 said:That bolded part is very likely the truth. 😢
The tests actually showed there is "something" on her brain, and I'm terrified that it can only be something bad... I don't get why she didn't go straight for an MRI or a CT scan, instead opting to head to the coast... though I get it, being stuck at home in bed gets old, so maybe she just wanted a change of scenery... plus, she’d been feeling great lately, absolutely fine!!!

I found out this morning that she already made it back home last night. She isn't doing well. I haven't called her yet... I'm scared... but I'll call... I'll ask her specifically about her blood pressure, though I have no idea what her baseline usually is...
If she even picks up at all 😢 uhhhh

Thanks for the advice... I'm going to reach out to some of her closer relatives regarding what you wrote... I just hope they rushed her to the ER the second they arrived!!
Dammitttt 😢

She needs to get to an emergency neurological intake immediately. Intracranial pressure has nothing to do with arterial blood pressure.

Emily Edwards19... I am truly devastated to see everything spiraling downward like this. Honestly, I'm at a loss for words and I don't even have any advice to offer; I am simply praying that things turn out okay and sending you my most heartfelt embrace of comfort. 😢

vividsailor7 said:She needs to get to an emergency neurology clinic right away. Intracranial pressure isn't the same thing as blood pressure.

So, she was over in Washington, D.C. seeing her doctor today, and from what I can gather, they just handed her some heavy-duty painkillers and sent her packing.
But then her cousin calls me up saying she can barely even talk, let alone see straight...
I'm heading over to be with her tomorrow....
I don't know... everything is just moving at lightning speed right now, it's overwhelming.😢

Does anyone know if there’s actually a rule for when patients are critically ill—like, when doctors know things are looking grim—do they HAVE to tell them directly, or does it just depend on the specific doctor? Like, could they have just told her mom instead, and let her decide whether or not to break the news to her?

Kate Brooks2 said:Emily Edwards19... I am just so incredibly sorry things are taking such a turn for the worse. I honestly don't even have the right words or any advice to give—I'm just praying everything turns out okay and sending you the biggest hug. 😢

thanks so much!
I'm at a total loss too... just speechless...... about two weeks ago, she seemed so healthy and had so many plans lined up.... and then those test results came back........ a coma!

Emily Edwards19 said:Is there some kind of official rule for when patients are terminal and the doctors know they're running out of time? Like, are they actually required to tell the patient directly, or does it just depend on the doctor's vibe? Could they have just pulled her mom aside and let her decide whether or not to break the news?

Honestly, I don't think they're legally obligated to spill it all at once. 🤷
When my mom was diagnosed, the oncologist didn't sit her down and say, "Hey, you've got maybe three to six months left"—though, frankly, I have no clue if he would've if she had cornered him and asked straight up—but he did tell us everything.
Sadly, the guy was spot on. 😢

redridge13 said:I don't think they have to 🤷
when my mom got her diagnosis, the oncologist didn't mention anything about a 3-6 month prognosis—not that he would have said it if she hadn't asked him straight up—but he did tell us
unfortunately, he was right 😢

I feel so bad for redridge13....😢
I honestly don't know how much good comes from knowing—or how much damage is done when my friend finds out she only has a few months left... maybe even less... I mean, was it really necessary to tell her? Even if there isn't much hope left... it's still a lot to carry. She shouldn't have had to know like that. Unless she asked directly, which I highly doubt...
It's just a total nightmare, no matter how you look at it....

Emily Edwards19 said:She was at her doctor's office in Chicago today, and from what I can gather, they just handed her some heavy-duty painkillers and sent her home.
Her nephew tells me she can barely speak or even focus her eyes...
I'm going to see her tomorrow...
I don't know... this whole thing is spiraling out of control at lightning speed...😢

Is there actually a protocol for patients who are critically ill when doctors realize time is running out? Are they REQUIRED to tell them, or does it just depend on the individual physician? Could they have, for instance, just told her mother so she could decide whether or not to break the news?

If you ask me, this is a massive failure on her doctor's part. They clearly know she’s an oncology patient and that her recent scans showed brain changes, especially now that these neurological symptoms are so blatant. A doctor has a duty to send someone like that straight to the ER for urgent neurological workup. Even if she is likely in the terminal stage, sending her home with nothing but pills for the pain isn't just unprofessional—it's unethical. When dealing with terminal patients, the entire goal should be ensuring quality of life for whatever time remains. That means palliative oncology care, such as using Dexamethasone to manage edema or palliative radiation to slow tumor growth if surgery isn't an option.
A physician is obligated to inform the patient of their Exact condition. If the patient is unconscious or otherwise unable to process that information, they are required to disclose it to the family members.

Angela Wright said:If you ask me, this is exactly what’s going on here. I honestly can't stop thinking about this massive oversight her doctor made—it’s actually infuriating when you think about it. You expect these professionals to have everything under control, right? But no, sometimes they just completely miss the mark, and it leaves you feeling totally blindsided. It’s one of those situations where you just sit there wondering how someone with all that training could let something so crucial slip through the cracks. It really makes you question the whole system sometimes, doesn't it? Just... ugh. Look, the doctor knows perfectly well that she's an oncology patient—I mean, the latest scans clearly showed changes in the brain, and now those neurological symptoms are just impossible to ignore. It’s getting obvious. At this point, the doctor is actually required to send her in for an emergency neurological workup. Even if she's likely in the terminal phase of the disease... it doesn't change the protocol. Sending someone home with nothing but painkillers—honestly, it’s just unprofessional. It’s unethical, too. I mean, really? Just hand them some pills and show them the door? It’s a joke.When you're dealing with people at the end of their lives, the whole point is really just making sure they get some actual quality of life out of what's left—you know? It’s about dignity and comfort, and that means leaning into palliative oncology care. We're talking things like using Dexamethasone to keep that swelling under control, or maybe even palliative radiation if a tumor isn't something that can be surgically removed... we just want to slow things down and keep them comfortable. That's the goal.
Look, it’s pretty basic stuff—doctors are legally required to lay out exactly what's going on with a patient's health. They have to be upfront about their condition, Exactly how it is. And if the patient is unconscious or just... well, unable to process the news for whatever reason, that responsibility shifts. The doctors are supposed to pass all that information along to the family instead. It's just common sense, really, though I'm sure there's always some bureaucratic headache involved in getting it done right.

Thanks so much. Honestly, it’s clear you really know your stuff—I’m still just out here scratching my head, doing my own little deep dives and asking way too many questions... but I totally get where you're coming from. There are so many holes in this whole situation. And man, I couldn't agree more with that part in bold... like, seriously, why would they even let her come home? Is the goal to just let her pass away as fast as possible? Or are they expecting her to just trek to the hospital every single day begging for help, only for them to discharge her again? It’s just this endless, exhausting cycle. Makes no sense. 🤷
By the way, she was actually getting her treatment and doing all her chemo over at Mayo Clinic.

So, I’m heading over to see her tomorrow...

Emily Edwards19 said:Thanks so much. It’s obvious you really know your stuff—I'm basically flying blind here, just digging through info and asking questions because I'm trying to make sense of it all. And honestly? A lot of this doesn't add up to me either. I totally agree with what you put in bold...I mean, why even let her come home? Is the goal to just let her fade away faster?? Or is she supposed to be trekking back to the hospital every single day begging for help while they just keep cycling her in and out. 🤷
By the way, she was getting her chemo treatments over at Mayo Clinic.

I'm heading over to see her tomorrow...

Sadly, it’s almost impossible to keep a patient like that in the hospital long-term😢
That’s just the reality of the American healthcare system for you😢

From what I can gather, she saw her primary care physician, who just sent her home with some painkillers. That is a massive oversight!
She’s an oncology patient with a potential tumor in the brain that requires active treatment. As long as there's any curative option available, they should be keeping her in the hospital under supervision. Right now, she isn't receiving any actual therapy at all. In a situation like this, standard painkillers are basically useless; the only things that will actually make a difference are Mannitol and Dexamethasone treatments. Anyone with a medical degree knows that

Angela Wright said:From what I can gather, she was seeing her primary care doctor who just sent her home with some painkillers. That’s a massive oversight!
She’s an oncology patient dealing with a potential brain tumor that needs treatment. As long as curative medicine has anything left to offer, they’re going to keep her in the hospital under care. Right now, she isn't getting any actual therapy at all. In a situation like this, painkillers don't do much—what she really needs is Mannitol and Dexamethasone therapy. Honestly, anyone with a medical degree should know that.

Regarding the bolded part—maybe I misstated things, but she was at the hospital in Chicago seeing her doctors and oncologists... they gave her meds there and then just sent her home.....🤷

She’s got zero therapeutic options right now... damn... I guess we're all just waiting for a miracle or something!

Emily Edwards19 said:She was at her doctor's office in Chicago earlier today, and from what I gather, they just handed her some heavy-duty painkillers for the headaches and sent her home.
Her brother tells me she can barely speak right now, let alone see clearly...
I’m heading over to see her tomorrow...
I don't even know... everything is moving at lightning speed right now... 😢

Does anyone know if there's a standard protocol for patients who are critically ill—when doctors realize time is running out—are they REQUIRED to tell them, or does it just depend on the individual physician? Could they have, say, just informed her mother instead, letting her decide whether or not to break the news to her?

Angela Wright is Exactly right. We are legally obligated to inform the patient about their own medical condition.

Emily Edwards19 said:Regarding that bolded part—maybe I misspoke. She was actually at the clinic here in Chicago seeing her primary doctor and an oncologist... they just handed her the meds and sent her home.....🤷

She isn't even on any kind of treatment plan yet... damn it... I guess they're just waiting for a miracle or something!

Look, since I don't know the diagnosis, the current status, or what the actual treatment plan is, I can't really comment or offer any advice.

@ Emily Edwards19

I just wanted to say that, despite everything your friend is going through right now—which sounds incredibly heavy—she seems to have a truly wonderful friend in her corner, and that’s you 🙂
just keep being there for her, regardless of how much it might scare you.
I am so sorry for what she's dealing with 😢

redridge13 said:unfortunately, it’s almost impossible to actually discharge a patient in that condition 😢
that's just the reality of the healthcare system here in America 😢

It really is a disgrace.
The way our terminal patients and the elderly who have lost their independence are treated—it’s nothing short of a horror story 🙂

vividsailor7 said:Angela Wright hit the nail on the head. It’s our job—period—to inform the patient about their own health status.

So, we're obligated. Fine. Understood.
I guess my one little shred of hope was thinking maybe she hadn't found out yet—that if she didn't know, things wouldn't spiral so fast... but honestly? That's just wishful thinking at this point. Even if she hadn't found out, everything would probably have gone south anyway. It's all just a losing battle, really.😢

Angela Wright, I want to extend my sincere thanks to you for showing up here so consistently and offering guidance to those who are clearly in desperate need of it. It is truly disheartening how this entire struggle reveals the reality that so many people would love to help but simply lack the know-how, while those who actually possess the expertise and capability choose to stand idly by and do absolutely nothing.
Hang in there, Emily Edwards19, and make sure you stay close to your friend; I am certain your presence will mean the world to her. It honestly warms my heart to see that there are still individuals like you out there. Best,