Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:..... and Dr. Herceg at the rebro....

Which Dr. Herceg are we talking about?
I have some relatively recent experience where he made an absolutely dreadful "rookie" mistake—unless, of course, he was simply trying to balance the hospital budget by cutting corners. 🤷

I certainly hope it isn't him...

mistyjackal842 and steeleagle152—I am honestly not certain if it is even feasible to transfer Dad to another hospital at this stage. Based on our previous experience, when Dad was under the care of the specialists over at Mayo Clinic, the emergency department at Johns Hopkins Hospital refused—or perhaps simply could not—accept him. There was actually some rather blunt, heated phone calls exchanged between the staff at Mayo Clinic and Johns Hopkins Hospital. In the end, the doctors at Mayo Clinic were the ones who ultimately admitted him. 😢

It isn't really a matter of whether they can or can't help, it’s more about whether they actually want to. My dad is quite a wealthy man, and we're all well aware of that, but I don't think that gives anyone an excuse to just let him suffer and give up on him. Most doctors are just clocking in and out, doing what they're forced to do. I guess that basically means they don't really care that much.

Sent from my iPhone 13 using Reddit

Ashley Murphy said:Which Dr. Herceg?
I actually have some pretty recent experience where he made a massive "rookie" mistake (unless he was just trying to save the hospital budget 🤷)

I really hope that isn't the guy...

Davorin.
He’s definitely not the friendliest guy to deal with sometimes, but he and Santek are highly specialized when it comes to rare tumors.

steeleagle152 said:It isn't a matter of "can we" versus "can't we," it’s a question of whether they actually want to. My dad is a pretty wealthy man, and we aren't blind to that fact, but being well-off shouldn't mean we just let him suffer or give up on him. These doctors are essentially just punching a clock; they're working because they have to, not because they care. It feels like they're just going through the motions without any real empathy.

Sent from my Android device using Reddit

The reality is that once someone is admitted, they basically become a permanent patient of that specific hospital system. Getting them transferred elsewhere is an uphill battle, mostly because administrators are always looking for ways to cut costs and keep things in-house.

mistyjackal842, I’ve got a bone to pick regarding your posts where you drag Johns Hopkins Hospital through the mud. Look, what happened to redwolf4 was undeniably horrific and absolutely warrants some doctors being kicked out of their medical boards, but your posts overall paint this entire hospital in such a dark light that it just isn't fair. There are still plenty of competent, top-tier physicians working there under terrible conditions—conditions that often prevent them from providing the absolute best care possible for their patients. By spreading this much negativity, you're unintentionally putting people in a really precarious spot; they read your claims and start second-guessing their own doctors, which is a complete disaster, especially when someone is dealing with a cancer diagnosis. A situation like what redwolf4 went through isn't some isolated phenomenon unique to Johns Hopkins; things like this happen every single day all over the US for a million different reasons. I think it would have been enough to share what happened and how you're handling it moving forward, without needing to smear the whole hospital in such a gruesome context. I hope you get where I'm coming from and don't take this personally. 🙂

Angela Wright said:Davorin.
He isn't exactly the most pleasant individual at times—certainly not his most charming quality—but he and Santek are highly specialized when it comes to rare tumors.

Fortunately, we aren't mentioning the doctor with that same name. 🙂

Angela Wright said:Actually, there is an unwritten rule in this country—once you’ve been admitted to a facility, you are officially considered a patient of that specific hospital. It becomes quite difficult to get transferred elsewhere later on, mostly because administrators are always looking for ways to cut costs.

They’ve implemented this new system—essentially classifying patients as outpatients—which effectively shuts the door on you ever being admitted to another hospital. Even theoretically, there's no way in. You start running into administrative walls the moment you try to check into an ER at a different facility. It doesn't matter that our specific situation at the local clinic doesn't technically fall under those constraints, or that we're technically within the jurisdiction of Johns Hopkins Hospital based on where we live. The fact that the attending physician couldn't consistently prescribe antibiotics for steeleagle152's father leads me to believe we are looking at the exact same systemic issue.

Ashley Murphy said:thankfully, we aren't mentioning doctors with the same name 🙂

I guess they’ve got this new scheme going on now where they just list patients as outpatients, which basically means you don't even have a theoretical chance of getting admitted to a different hospital... problems start popping up the moment you try to admit someone to an ER at another facility... it doesn't really matter that in our case the local clinic doesn't do that, or that based on where we live we belong to Johns Hopkins Hospital... the fact that the doctor at the clinic couldn't consistently prescribe antibiotics for steeleagle152's dad leads me to believe it's all part of the same process...

The doctor at the clinic wrote my dad a prescription for an antibiotic that the doctor at Johns Hopkins Hospital had requested, even though it technically goes against protocol, but at the same time she sent a memo to her colleague noting that she'd handle the next round of antibiotics herself. It's just one person blaming the other for the mistakes. 🤷

Sent from my Android using Reddit

This is my first time actually posting here, though I’ve spent most of this year lurking and reading through everyone else's thoughts, experiences, and advice. My family went through a brief, brutal fight with glioblastoma earlier this year, but now I’m left dealing with the long-term fallout the tumor left behind in me... I used to call the thing "trash" back when my father was still alive, but now it's just a different kind of struggle. I'm basically running on autopilot right now, but it's going to take some serious time and effort to feel like myself again.🙂Anyway, I just felt the need to get that out there.

I guess even zrixy-in's father ended up in a situation just like my mom's. They wouldn't even give him antibiotics; they just pushed everything off onto a primary care doctor instead. It’s just... it's hard, because he’s a seriously ill man who can’t even swallow, and it should be their job to help him while he's already being treated in the hospital. If you look at other forums—like where parents of little kids post—even there, they say the only place where staying by a sick child all day is strictly forbidden is Johns Hopkins Hospital. I spent so much time in that hospital, not for myself, but while Mom was being treated. People actually started recognizing me in the hallways; they'd ask me for directions to specific buildings. My observation is that, generally speaking, things just don't function at that hospital because there's zero real cooperation between departments. Apparently, it’s considered a nuisance if you try calling a doctor from another department to help a patient. Is it really normal that in a General Hospital, I'm running through the corridors chasing down doctors, practically begging and pleading for them to help my mom? And they won't, because it's Sunday and it's their day off, so we just have to wait until Monday, or so they told us. And once, an internist did respond before Mom even had a fever; he came into her room and noted she was cyanotic. But he didn't do anything about it. He didn't prescribe any therapy; he just... well, he just said it. That was the first sign that something was wrong, because she had never been cyanotic before. That was two days before the fever spiked, and that was a Friday, so it wasn't even his day off yet.

Now, don't get me wrong, there are good doctors there too. This younger doctor who operated on my mom is actually good and kind, and he doesn't lie like those others on the vascular surgery unit. But even he doesn't always dare to take action when he should, mostly because he's afraid the others on his unit will throw him under the bus later. If someone already trusts their doctor at that hospital, then they'll keep trusting them regardless of what I write here. I just wrote this to warn people so they know where they're going, and they can decide for themselves if it's worth the risk. I've seen so many elderly people waiting there, thinking they've come to top-tier specialists for treatment. They have no idea what could happen to them. A few days before Mom went into a coma, there was an older lady—much older than my mom. Should I even mention that they only bothered to call a neurologist for her once her condition had become extremely critical? The nurses there sometimes administer medication on their own initiative, and the surgeons during rounds only look at the surgical wound; they only act if the wound gets infected. They don't pay attention to anything else. There were problems back in the second month when Mom was hospitalized for the amputation of her right lower leg. The nurses again gave the wrong IV on their own, though luckily they reacted in time, even though it was a weekend and it wasn't sepsis. I really thought things would change after that, maybe they'd received some guidance on how to proceed so they wouldn't be risking the lives of immobile patients through ignorance. I wanted to change hospitals, obviously, and wanted Mom to go to the Mayo Clinic instead because I have so much more faith in them. But there was a strike starting right then, and Dad decided we should stick with the doctors who had been treating her so far. Even though Mom wanted to switch hospitals, too. Back in the second month of this year, they were decent to her, even though I know she wasn't easy to deal with. But now, with the strike happening, the attitude has shifted for the worse; they won't talk to us at all, and there's no way you can ask them anything. They kept everything secret, basically. The only one who was decent was Mom's anesthesiologist; when he was on duty, he would actually give us information about her condition. That was also the day he helped her get a blood transfusion because she was anemic after the surgery. She lost so much blood after this last operation because she was bleeding so heavily. And that happened because, because of the strike, they were only doing emergency surgeries and rushed her procedure through that very day, even though, by all accounts, it should have been postponed at least one more day since Mom had been on heparin to prevent clotting right up until the surgery. The reason they gave me was simply that there wouldn't be a free operating room available.

Me again, probably boring myself already 🙂 but I can't find anything useful online...
Does anyone know where I can pick up a wig in Miami?? Is there a specific shop?

slypuma said:Me again, I'm already bored of my own company 🙂 but I can't find anything online...
where in Miami can I get a wig?? Is there a shop nearby?

Check the pharmacy near Beverly Hills over by the American district. They should have them.

Thanks, turkey 🙂))

Angela Wright, I think I messed up our DM, not sure if you even saw it...
Anyway, my doctor in NYC reached out to some specialist who deals with rib sarcomas (Dad can't remember his name), and from what I gather, the spots on the lungs are small enough that this chemo should basically wipe them out. She couldn't get an appointment with Joe Rogan, but she said she’ll try again.

slypuma said:Me again, I know I'm being a total bore at this point 🙂 but I can't find anything useful online...
where in Miami can I actually buy a wig?? Is there a specific shop?

Just a little bit of advice from someone who’s been through the oncology ringer—you actually HAVE a right to get a wig covered by Medicare, unless you’re in a massive rush and need one right this second. Just ask your primary care doctor; honestly, they should have mentioned it already—don't go wasting your money when you've already got enough bills piling up! cheers.

Casey Booth3 said:Just a little bit of oncological advice—patients actually DO have a right to a wig through their insurance, provided you aren't in a massive rush and need one this second. Just ask your primary care physician; they really should have mentioned that to you already. Don't go wasting your own money when you've already got enough medical bills piling up! Cheers.

That’s spot on. Insurance usually covers the cheapest options, which honestly aren't great quality. Back in 2006, we picked up my mom's wig at a specialty shop near Vatican City; they had a contract with Medicare, so we just paid the difference to get her something a bit higher end.

Hey everyone, I was posting here about 10 months ago when my mom first got her breast cancer diagnosis. She’s finished six rounds of chemo plus radiation, and since her tumor is hormone-independent, they’re basically done with the active treatment phase. We were all expecting she’d head straight for a PET scan once everything wrapped up, but her oncologist actually suggested a mammogram, some lung imaging, an abdominal ultrasound, blood work, and a routine OBGYN checkup instead. When Mom actually asked if she needed a CT scan, the doctor just gave her this totally bewildered look... so, I guess I'm wondering, is it actually possible for those tests to be enough to catch any potential metastases?

I mean, if you can, just run as many tests as possible to be absolutely sure everything is okay. When my mom was dealing with neurological issues involving her head a few years back, they didn't even suggest an MRI at first. It wasn't until I specifically asked the neurologist if we should schedule one for her six-month follow-up that she finally brought it up. It felt similar this year during her four-month check-up, too—they wouldn't even agree to order a Doppler ultrasound for her leg vessels over at Johns Hopkins Hospital. I had to practically beg for it, just so a senior internist could give me a straight answer, because otherwise, it wouldn't have changed anything for her. So, after that whole ordeal, we ended up taking my mom to Quest Diagnostics to get the Doppler done instead. And, of course, there was a valid reason to do it, because the radiologist there actually referred her to a surgeon afterward. Personally, I actually preferred doing the Doppler at Quest Diagnostics since it’s an independent clinic. I really have to give credit to the young, conscientious doctor working there.

Sent from my iPhone 13 using Reddit

Just a heads-up for anyone looking into this... at Mayo Clinic, you can only get a Doppler done as a private patient, which means you have to pay the full amount out of pocket. That’s exactly what happened with us when we went for my mom. We ended up with an unused referral because, I guess, they don't even perform lower limb vascular Dopplers if you're just using a standard insurance referral. Just thought someone might need to know.

Sent from my iPhone 13 using Reddit

Linda Ortiz49 said:Hi everyone. I posted here about 10 months ago when my mom was diagnosed with breast cancer. She’s finished six rounds of chemo plus radiation, and since the tumor is hormone-independent, they're wrapping up her treatment. We were expecting a PET scan once everything concluded, but her oncologist suggested a mammogram, chest X-ray, abdominal ultrasound, blood work, and a gynecological exam instead. When Mom actually asked about getting a CT, the doctor just gave her this blank stare... I'm wondering, is it actually possible for those tests to catch any potential metastases?

If there weren't any metastases at the onset of the disease, they won't order a CT. It's enough to monitor markers regularly and repeat the screenings mentioned above—though if it were me, I'd also make sure to get an ultrasound of the axillary area.