Support for families dealing with cancer and other serious illnesses (Part II)

I’m probably not helping you much here, but I know they mentioned back at the vineyard location on Friday that oncology patients get all their checkups done regularly, so maybe things work the same way over at Jordanovac.

We managed to pull some strings and get a hold of someone through a contact. They’re claiming they’ve also taken a hit from the earthquake, so we’ll just have to wait and see if that holds water...

I honestly have no idea how all these orders and appointments are going to play out. My scans start at the beginning of May. I've got an MRI and a neurologist scheduled in Chicago, then an ENT surgeon over by the vineyard area, and finally a neurosurgeon and oncologist at Rebro Hospital. Getting that MRI done is my top priority right now—I just need to know exactly where I stand.
I’m really hoping I can pull this all together and get some answers.

Generally speaking, hospitals prioritize patients coming in for their initial screenings or those currently undergoing active treatment. They tend to push back appointments for people who are just there for routine check-ups or are on preventative therapies—essentially anyone with a low risk of a relapse. Of course, every medical facility operates by its own internal logic, but that’s the standard approach you'll see most often.

The virus is spreading way too fast right now. Honestly, I don't even trust that I'll actually get my MRI when they say I'm scheduled. If they just keep pushing my appointment back, I'll be waiting forever. At some point, you just have to pay for the scan out of pocket—then you're actually at the front of the line.

Someone who needs an urgent initial oncology consultation can't even get an appointment because the only oncologist available right now is out with the flu, and they have absolutely no idea when he'll be back on the job.

The LOM staff just laughs it off, saying, “Hahaha, you guys really have no luck,” while politely offering some painkillers.

So, what now?? With this virus going around, who knows how long the wait will be. And then, when (or if!) the appointment finally happens, the first thing they’ll probably ask is—where have you been all this time? Why did you wait?

The situation is just abysmal. As if dealing with COVID-19 wasn't enough, now we’re stuck navigating this earthquake uncertainty too. They basically told us our only option is to sit around and wait for them to call. Honestly, I have a feeling it'll be more of the same waiting we've endured so far, while they waste months running him through endless, inconclusive tests. His markers aren't showing any cancer, yet the PET scan shows something, and then he has to undergo a bronchoscopy—which he’s already had three times now—only for them to come up empty-handed again.
I went through this exact same ordeal with my dad regarding lung cancer, and frankly, I’ve got the distinct impression that nobody actually knows what they're doing.

Jack Diaz4 said:If it doesn't show up on a PET scan, what on earth is it supposed to show up on?? It’s honestly bizarre that a PET scan wouldn't pick it up, and

A PET scan isn't designed to flag bone tumors. And no, just because something lights up doesn't mean it's cancer, just like how not everything that glows is a tumor.

silentskipper3 said:Someone who needs an urgent initial consultation with an oncologist can't get seen because the only specialist currently available has the flu at home, and nobody knows when they'll be back on the job.

The hospital staff just laughs it off, saying, "Hahaha, you guys really have no luck," while politely offering some painkillers.

So what now?? With this virus going around, who knows how long the wait will be. And then, if (and when!) they actually get that appointment, the first thing they'll hear is, "Where have you been all this time? Why did you wait so long?"

Which facility is this?

I called the local hospital this morning, thinking—maybe, just maybe—that the poor guy might finally get some actual news about seeing an oncologist. Sadly, no luck there. He ran into some incredibly abrasive staff who wouldn't give him a straight answer; all they’ll say is "call us back every single morning and we'll see."

Robin Diaz4 said:The whole situation is just terrible. As if dealing with COVID-19 wasn't enough, now we have this earthquake mess on top of it; they basically told us we just have to sit around and wait for them to call. Honestly, it’s going to be the same old story as what you've been waiting for so far—they've been dragging their feet for six months now with all these useless tests. His markers don't show any cancer, but then the PET scan shows something, and then he has to go back for yet another bronchoscopy... he's already done it three times and they still haven't found anything.
I went through this exact same nightmare with my dad regarding lung cancer, and honestly, I get the feeling that nobody actually knows what they're doing.

The entire Jordanovac staff has been moved over to Rebro Hospital, and they've transferred all the Jordanovac numbers over to Rebro too.

silentskipper3 said:The local hospital in San Diego—I actually called them this morning hoping the poor guy could somehow get an appointment with an oncologist. Unfortunately, no luck there. He ran into some really frustrated staff who wouldn't give him any real info, just telling him to call back every single morning and "we'll see."

Have them reach out to me via the website www.onkologija.net or the Facebook page onkologija.net so I can figure out the specifics and gauge how urgent the situation is.

Just passing this info along, thanks.

Could someone please share their thoughts on this pathology report? Is it actually possible to wipe out any remaining cancer cells with the recommended radiation therapy? Also, if we're talking percentages, what are the realistic odds for a full recovery?

The specimen consists of a bile duct measuring 3 cm in length and 1 cm in diameter, featuring a branching structure with two proximal ducts—each 0.5 cm long and 0.8 cm in diameter. At the central junction, the outer diameter of the duct expands to 1.6 cm, showing thickened, firm walls. Histologically, there is transmural infiltration by tumor tissue composed of clusters and pseudo-glandular formations of moderately differentiated atypical epithelial cells within a desmoplastic stroma. Lymphangioinvasion and perineural invasion are present. The tumor tissue involves both layers of the duct, transmurally infiltrates the walls of all examined bile ducts, extends into the surrounding fatty tissue, initially infiltrates the edge of the visible liver tissue, and reaches the lateral (circumferential) resection margin. At the proximal resection margin of both ducts, tumor tissue is present, reaching the lateral (circumferential) margin. At the distal resection margin of the bile duct, the wall contains proliferated connective tissue with multinucleated foreign-body type giant cells and foreign material (surgical sutures), while the resection margin itself is partially artificially damaged. No tumor tissue was found at the described resection margin.

Hello everyone,

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Let’s talk a little bit about mental health and how COVID-19 has shaken things up. It's a heavy topic, but one that deserves some real attention.
https://www.onkologija.net/post/koro...1kih-bolesnika

Kimberly Ward said:The entire Jordanovac staff moved over to Rebro Hospital, and they’ve transferred all the Jordanovac patient files there too.

Hi everyone,

My dad was scheduled for chemo at Jordanovac back on April 8th. We actually managed to get through to a floor nurse over the phone, and she mentioned that the chemotherapy sessions would now be happening at Rebro (on the 1st floor, the green building)—but we just have to wait for them to call us with an actual appointment time. That was a week ago, and honestly, we haven't heard a peep since.
On top of that, she couldn't tell us who will be managing his care moving forward—especially since our usual pulmonologist was transferred over to the ICU at Rebro.
From what I hear, they've basically redistributed the doctors from Jordanovac across various other hospitals.

Does anyone happen to know if the pulmonologists at Rebro will be taking over the patients coming from Jordanovac?

Thanks to everyone for any info you can share.

granitepanther45 said:Hi,

My dad was scheduled for chemo at the Jordanovac location back on April 8th. We finally managed to get a hold of a floor nurse over the phone, and she told us that chemotherapy sessions would actually be moved over to Rebro Hospital (1st floor, green building), but we just have to wait for them to call us with an appointment time. That was over a week ago, and we haven't heard a peep from anyone since.

On top of that, she couldn't tell us who will be managing his care now, especially since our regular pulmonologist was transferred over to intensive care at Rebro.

Word is they’ve been redistributing doctors from the Jordanovac location to other hospitals across the city.

Does anyone happen to know if the pulmonologists at Rebro are going to take over patients coming from the Jordanovac location?

Thanks everyone for any info you can share.

The Jordanovac location falls under Rebro's jurisdiction, and while all those pulmonologists are originally from Jordanovac, they're likely all tied up dealing with COVID-19 right now. It’ll probably end up being handled by one of the oncologists instead. Your best bet is to call the day oncology unit at Rebro directly and ask them how they're handling the transition.

Megan Lopez5 said:Please, if anyone understands this report, what is your opinion? Is it possible to destroy any remaining cancer cells with the recommended radiation? What are the chances of a cure, expressed as a percentage?

The specimen consists of a bile duct measuring 3 cm in length and 1 cm in diameter, featuring branching and two proximal ducts, each 0.5 cm long and 0.8 cm in diameter. In the middle section, within the branch, the outer diameter of the duct is 1.6 cm, with thickened, firm walls histologically infiltrated transmurally by tumor tissue. This tissue is composed of clusters and pseudo-glandular formations of moderately differentiated atypical epithelial cells within a desmoplastic stroma. Lymphangioinvasion and perineural invasion are present. The tumor tissue involves both walls of the duct, transmurally infiltrates the walls of all examined bile ducts, extends into the surrounding fat, initially infiltrates the edge of the visible liver tissue, and reaches the lateral (circumferential) resection margin. At the proximal resection margin of both ducts, tumor tissue is found reaching the lateral (circumferential) resection margin. At the distal resection margin of the bile duct, the wall contains proliferating connective tissue with multinucleated foreign-body type giant cells and foreign material (surgical sutures), while the margin itself is partially artificially damaged. No tumor tissue is found at the described resection margin.

Generally speaking, in all metastatic cancer cases,
the primary goal is to achieve maximum regression and/or disease stagnation. Total remission is, unfortunately, still a very rare occurrence.
You have to keep fighting for every single new day and take every chance available, whatever happens.

Angela Wright said:The Jordanovac clinic is right under Rebro Hospital—honestly, most pulmonologists come from there—but since everyone’s likely tied up dealing with COVID-19 right now, things might be shifting. It'll probably end up being managed by one of the oncologists soon. Your best bet is to just reach out to the daytime oncology ward at Rebro Hospital and ask them directly how they're handling everything.

Thanks so much.