Support resources for families dealing with cancer and other serious illnesses

My mom came home from her oncologist today feeling completely overwhelmed and confused. 😕
The report says:

... we realized that E-cadherin was incorrectly dictated as positive when it was actually negative, which would point toward invasive lobular carcinoma of the breast....

Honestly, if they had just put a comma after "negative," things would have been much clearer. 🤷

Anyway, she starts chemotherapy this Wednesday, and they'll be running it alongside radiation therapy.

My father, who is 68, was hospitalized ten days ago after turning yellow and dealing with some digestive issues (pale gray stools and trouble passing anything). He’s also lost weight quite suddenly.
Exactly one year ago, he was admitted for similar digestive problems, and that's when they found a pulmonary embolism. They ran a colonoscopy and a CT back then, but aside from the embolism, nothing else showed up. Over this past year, he’s been consistently taking Mary Martin and keeping an eye on his blood work. However, ten days ago, his INR suddenly spiked to 7.

They've done a gastroscopy and an abdominal ultrasound (the doctor didn't have much to say about those results), but they couldn't perform a colonoscopy because of a large hernia in his groin area.

I'm looking for some insight on these CT results.

Multi-phase MSCT of the upper abdomen:

The liver is normal in size and density, with no focal lesions.
The intrahepatic bile ducts are dilated and narrow down near the liver hilum, where an infiltrative mass measuring 4.2x4.6 cm is noted.
The hepatocholangiodeuct is dilated up to 1.3 cm and extends down toward the pancreas. The pancreatic duct is not dilated. In the head of the pancreas, there is a more homogeneous, knot-shaped area measuring roughly 23x36 mm of unknown origin.

An infiltrate is seen following the portal vein and the superior mesenteric artery (specifically its hepatic branch); the portal vein is narrowed and encased by this infiltrate, though there are no signs of thrombosis.
A neoplastic infiltrate is also visible in front of the aorta and between the aorta and the IVC.

In the hepatoduodenal ligament area, two significantly enlarged lymph nodes are visible, measuring 1.2 cm and 1.5 cm.
In the ventral omental area, several mesh-like formations are seen, which could correspond to carcinomatosis.
Scans through the lung bases show several nodular lesions on both sides, which could represent metastases.

The other parenchymal organs of the upper abdomen and pelvic organs show no focal changes.
There is no sign of ascites in the entire imaged area.

Brandon Taylor10 said:...
Could someone please provide some insight regarding this CT report?

Multi-phase MSCT scan of the upper abdomen:
.....

I am afraid the findings aren't good news 😢.

The scan shows a tumor mass along with a cluster of enlarged lymph nodes—which likely represent metastases—as well as small nodules visible in the lungs (since an abdominal CT naturally captures the lower lung bases), which also suggest metastatic spread.

It remains somewhat unclear whether the primary tumor is located in the hepatic hilum (perhaps hepatocellular or cholangiocarcinoma?) or if it's originating near the head of the pancreas.
One of those two locations is most likely the primary site, while the other is likely a metastasis.

Because the tumor process is putting pressure on the bile ducts, the bile can't flow out of the liver properly—which explains why there have been changes in stool color.

It is absolutely essential to first determine which process is the primary one; this will require a puncture or biopsy of the lesion in either the liver and/or the pancreas.

Depending on the patient's overall condition and bilirubin levels, doctors may also perform biliary drainage to help relieve the buildup of bile in the system.

So...
My sister showed up at the ER quite late in the game... (breast cancer has already metastasized to her abdomen)
Chemotherapy isn't even an option right now because she’s just too weak.
The directive is basically that she has to get stronger before they can even consider starting therapy.
Eating is a massive struggle due to the abdominal pain... she’s mostly just sipping on those nutritional shakes (Prosur).
She barely eats anything... what can we actually do?
.. I don't live with them myself—I live with my daughter, who is my niece in this situation.
My niece is looking into some alternative treatment involving Maple syrup and baking soda... she sees it as a lifeline. Personally, I’m a bit skeptical, but honestly, I don't have a better idea...

I’m feeling a bit lost here... is there any actual way to help her "strengthen up"? All the doctor said was that she needs to gain strength. Before that, no therapy is on the table (and apparently, she might only have about a month, maybe two at most)... She's always had a very ectomorphic build, so even when she wasn't sick, she struggled to keep weight on.

And one more thing... I know it’s a tangent, but maybe someone has some perspective...
How do you tell your parents? I can't talk to them on the phone without breaking the news that their daughter is dying (god, that sounds so grim... it hasn't fully sunk in yet...) but I can't bring myself to say it either. They are elderly and in poor health themselves (in their 80s)... and my brother passed away a few years ago (not from cancer)... everything just feels like it's falling apart.

Thanks for the reply, wanderingcobra76.

nimblepanther14 said:So...
my sister is showing up at the ER when it's already looking pretty grim (breast cancer has metastasized to the abdomen)
chemotherapy isn't an option right now because she’s just too weak.
Basically, she has to get her strength up before she can even consider therapy.
Eating is a struggle due to the abdominal pain... she's sipping on those nutritional shakes (Prosur).
She barely eats anything... what can be done?
.. I don't live with them (I live with my daughter, my niece).
My niece is looking into some alternative therapy involving Maple syrup and baking soda... she thinks it's a lifeline. Personally, I'm skeptical, but I'm out of ideas.

I'm lost here. Is there any way for her to "strengthen up"? The doctor just said she needs to gain strength. No therapy is on the table until then (and apparently, we only have about a month, maybe two max)... She's naturally very ectomorphic, so even when she wasn't sick, she struggled to keep food down.

One more thing... I know it's not directly related, but maybe someone has advice...
How do I talk to my elderly parents? I can't call them without telling them their daughter is dying (god, that sounds so horrible... it hasn't even fully sunk in yet), but I can't just leave them in the dark either. And they aren't exactly in great health themselves (they're in their 80s)... plus my brother passed away a few years ago (not from cancer)... everything is just falling apart.

Prosur is a supplement designed to provide all the nutritional requirements of a standard meal, which is why it's used for patients in this state who can't eat. You should try starting slowly with soups and light foods, but you can't force it. However, she absolutely must take the Prosur; if she falls into cachexia, things will go downhill fast. 😢
None of this baking soda or Maple syrup nonsense is going to boost her immunity. That's just pseudoscientific garbage that, unfortunately, a lot of people fall for. I'd much rather recommend complementary supplements that actually have some studies backing their efficacy, like Beta-glucan, native propolis, etc. There's plenty of this stuff on the market—ask around at a local pharmacy—but don't give her more than two different supplements at once. Just let her pick one and stick to it.
It's hard to say exactly what can be done without seeing her specific medical history, but in cases like this, doctors sometimes prescribe Xeloda to help slow things down slightly while the patient recovers enough to handle actual oncological treatment.

As for the parents, that is a truly heavy and tragic situation. 😢 My take is that in situations like this, it's best to tell them half the truth—that she is ill and undergoing treatment. You have to judge for yourselves exactly how much to say and in what manner; excessive details are out of the question. People need to be able to adjust to the reality and prepare for the worst-case scenario, because if they aren't, things become much harder later on.
In any case, I recommend seeking a second opinion from a major specialist clinic elsewhere. The world's leading expert on breast cancer is Jose Baselga.
Try getting the medical reports translated into Spanish or English and reach out to him for a consultation and a recommendation on the next steps.

Thanks for the reply...

Angela Wright said:Prosur is a nutritional shake designed to cover all the bases of a standard meal—that's why we give it to patients who just can't manage solid food right now. You really have to ease them back in with soups and light fare, though—you can't force anything—but they absolutely must take the Prosur. If they slip into cachexia, things will go downhill very quickly indeed.😢
Neither baking soda nor Maple syrups are going to boost her immunity. That’s just pseudoscientific nonsense, and unfortunately, plenty of people fall for it. I’d much rather suggest complementary supplements that actually have some clinical backing behind them—things like Beta-glucan or native propolis. There's a lot of that available out there; just ask at your local pharmacy. But please, don't overwhelm her with more than two different supplements. Just pick one or two and stick to it.

I’m a skeptic about all these supplements too, but you know how it goes... when someone is in this position, they’ll try anything—even me, and I’m not exactly a believer in that sort of thing.
... I have heard that Beta-glucan might be worth using... I'll try to suggest that.

Angela Wright said:It’s hard to offer specific advice without seeing her full medical history, but I do know that in cases like this, doctors often prescribe Xeloda to help slow things down slightly until the patient regains enough strength to resume their primary oncology treatment.

I don't know the exact specifics of the tumor itself... but from what I gather, the main issue is the tumor that has spread to the abdomen. It's causing edema—swelling—which puts pressure on the organs and causes abdominal bloating... which means she has to undergo drainage periodically. And it’s a miserable situation, because the pain it causes makes eating and moving around incredibly difficult.
She was always a bit thin and struggled to put on weight to begin with... and now she desperately needs to stabilize her condition... time is running out, yet she's too weak to start the actual therapy.

Angela Wright said:As far as the parents go, it truly is a heartbreaking and tragic situation.😢 My take is that in these moments, it's often best to tell them half-truths—that she is ill and undergoing treatment. You have to judge carefully what to say, how much to disclose, and in what manner; excessive details should definitely be avoided. People need time to process the reality and prepare themselves for the worst-case scenario, because if they aren't prepared, things become much harder when the situation worsens.

Right now, they just know there's "something" there—but they aren't quite sure what it is yet..

Angela Wright said:In any case, I’d strongly suggest getting a second opinion from one of the major specialized clinics abroad. If you're looking for the absolute best in the world when it comes to breast cancer, Jose Baselga is the man to see.
Just try having the medical reports translated into Spanish or English and reach out to him directly to ask for his take on the situation and how to proceed.

Thanks... we'll certainly look into that... though, for starters, we just need her weight to begin trending upward again..

Thanks again.

nimblepanther14 said:Thanks for the reply.

I’m skeptical about all these supplements too, but you know how it goes... when you're stuck in a situation like this, you'd try just about anything. Even someone like me, who doesn't buy into that kind of stuff.
I've heard that Beta-glucan might be worth looking into... I think I'll give it a recommendation.

The biggest issue here is that even if it doesn't cause direct harm, using baking soda could seriously mess with her stomach, making it even harder for her to actually eat.

I'm not entirely sure which specific tumor we're talking about here, but from what I can gather, the real nightmare is the tumor that has spread into the abdomen. It’s causing this massive edema that puts pressure on the internal organs and makes the belly swell up constantly. Because of that, they have to go in for drainage every so often just to manage it. To make matters worse, the sheer level of pain it causes makes it nearly impossible for them to eat properly or even move around.
She was always naturally thin and struggled to put on any weight... and now she’s in a position where she actually needs to bulk up to fix things. But the clock is ticking, and she can't even start her therapy because she’s just too frail.

I get exactly what’s going on here, but like I said before, it’s not enough for me to just give you an opinion on whether this is a lost cause or not. The reality is that when things get this heavy and the medical bills start piling up, decisions often shift toward being "pragmatic." Too often, the actual human element—the chance to squeeze out more precious time or improve a patient's quality of life—gets tossed aside in favor of what makes sense on a balance sheet. That’s exactly why I suggested getting a second opinion.

Angela Wright said:I understand what’s going on here—but as I mentioned before, it isn't enough for anyone to give you a straight answer, like whether they are stalling or not. Unfortunately, it often happens that because a condition is so severe and the treatment is so expensive, decisions regarding a patient's fate are made quite pragmatically—often ignoring the simple fact that there might still be something to be gained in terms of time and quality of life. That’s why I suggested getting a second opinion.

Do you think it's possible they just don't want to take any risks because the body is too weak?
Is it a good idea to send an email to a clinic in Spain with translated reports and the doctor's opinion to see what they think... what their experience has been? Do they actually respond to questions like that?

nimblepanther14 said:Do you think it's possible they just don't want to take the risk because the patient's body is too weak?
Is it okay if I email them in Spain with translated test results and a doctor's opinion to see what they think... any experience with this? Do they actually respond to questions like that?

It’s entirely possible. Just like how it's possible they decide there's no point in fighting for more time because the disease is too widespread or too advanced—essentially stripping the patient of their right to make that choice themselves. Unfortunately, that kind of thing happens here all too often. 😢
Regarding emailing doctors abroad, try reaching out first just to ask if they're even open to inquiries. If they are, find out the cost, exactly what documentation they require, and which language they need everything in. Experiences vary wildly, but my gut tells me Baselga will likely try to be helpful.

I tried to draft this post earlier, but it seems to have vanished into thin air. Not that it matters much. My history with this disease spans over a decade now. Three family members have already been taken by this senseless illness, and to make matters worse, my father is currently battling a devastating diagnosis: a malignant tumor of the gallbladder and intra-abdominal lymph nodes. We are currently waiting on chemotherapy. A second opinion yielded the exact same recommendation. He had a stent inserted after we discovered everything following his onset of jaundice. In my previous post, I asked how one stays positive through all of this—whether anyone else is walking this same path. I need to be strong, but I haven't even finished processing the previous traumas. I find myself trying not to cry in front of him; I’ve already broken down once, and seeing that pain was almost unbearable. With my mother, I never let the mask slip; I stayed upbeat, joking and making comments to keep things light. But my father was the pillar of our family, a man who has since become reliant on me and my husband when he isn't working. Now, that pillar is crumbling, and he needs help. Meanwhile, I am falling apart. It feels impossible to believe this is happening all over again. Noni passed in 1998, Grandma in 2002, and Mom in 2007. It is simply surreal.

Gerald Bishop, I’m truly sorry you were hit with all of this at once. Unfortunately, your situation isn't an outlier; we're going to see more cases like yours moving forward.
I know staying positive feels nearly impossible after everything you've been through, but if I can offer any advice, it’s this: deal with things only as they arrive. Don't dwell on them, don't fantasize about the "what ifs," and for heaven's sake, don't try to manufacture drama for a future that hasn't happened yet. Life offers zero guarantees for anything other than the fact that we are temporary—we're here today, and tomorrow? Who knows. All we can actually control is making our lives as high-quality as possible right now. In that sense, make plans for today and maybe a tiny bit for tomorrow, but nothing beyond that. That is how you help yourself most. Besides, we all carry a reservoir of strength inside us that we aren't even aware of; we have this raw, animalistic resilience. Decide right now that regardless of the outcome, this will not break you. That's the only way to play it.
Hang in there. You're going to be okay.

Gerald Bishop said:...

I wish I could offer some kind of help or comfort... though, honestly, I’m at a loss for what that would even look like..
I suppose—with a certain heavy sort of resignation—I can accept that she has entered a zone from which there is no return..
She was an emergency case yesterday; they drained her and let her go back.. she’s going (and she wants to go) to Smalltown, USA...
Let it be.. perhaps it’s for the best.
It’s definitely better for her daughter (my niece).. at least, looking at it rationally, it is.
The elderly parents found out today.. I’m heading over to see how they're holding up... I'm worried about them.
I feel this surge of anger.. toward my sister.. who, damn it, wouldn't go to the doctor when it actually mattered.. yet she'd go for every little nothing else...
I don't know how one is supposed to live with a death sentence "signed" by your own body.. knowing that truth.
No one told her directly, but she knows.. I think she knows.. I can see it in her eyes..
My thoughts are such a mess when I dwell on this.. please excuse me, but I have nowhere else to say all this.. I can't afford to break down..

@nimblepanther14/">@@nimblepanther14
"If I were" and "if it had been"—those are just empty hypotheticals. The question isn't what could have happened; the reality is that once things start spiraling, they usually go downhill at lightning speed. Even if she had left "in time," there’s a very good chance we’d be looking at the exact same outcome.
I am truly sorry. Stay strong.😢

Angela Wright said:@nimblepanther14/">@@nimblepanther14
"If I were" and "if it were"—those are the great hypotheticals. The question is how things might have turned out, but unfortunately, when things start spiraling again, they usually just gallop away at lightning speed. Even if she had left "in time," the outcome likely would have been identical.
I am truly sorry. Stay strong.😢

Thank you...
When I deal with emotions that aren't exactly "standard issue"... well, I tend to transmute them into anger—mostly because grief is a much harder pill to swallow. And, much like those more "primitive" impulses, I direct that anger straight at the source of the feeling. Of course, nobody actually knows what might have happened if things had gone differently...
It was the same way with my brother. I used to blame him for the state he ended up in—blaming his messy lifestyle for why he eventually passed away (it wasn't a tumor, by the way). Even now, whenever the memory surfaces, there’s this strange cocktail of sadness and resentment bubbling up... even if the sharpness of the memory has faded over time.😢
Today I'm heading over to visit my folks... my mother is staying with my sister for a little while... it's going to be tough to navigate that heavy cloud of sorrow hanging in the air (she won't let herself show it in front of my sister)... damn it, anger and fear are much easier—and frankly, more welcome—emotions to carry than this.
And then there's the fear... the fear of that absolute nothingness, of what awaits me one day too. It's a reminder that after everything is done, nothing remains. If I were a believer, perhaps it would be easier. To just sink into the hope of something higher, something beyond this life... but I simply can't.

Angela Wright and nimblepanther14, my dad told me—after two days of tears and heavy emotions—not to bury him until he’s actually dead. That’s just a loose paraphrase, but he’s right. It doesn't matter how much I struggle with this; that dull ache in your chest that makes it hard to breathe, the mental movies you can't stop playing... none of that helps anyone. I have a formula: you stay strong for five or six days, and then one afternoon, you find friends who are willing to just sit there with you while you cry, laugh, drink a beer, or smoke a cigarette even if you aren't a smoker, or walk around in the rain until you're soaked to the bone. You take a few hours to escape, vent, and reset. Then you return to reality, stable and steady, for another five days. Luckily, I have a friend who caught me, shoved me in the car, and drove me out into nature with a beer 🙂
And thank you both so much for replying. Having someone listen without charging a fee means everything 😉
nimblepanther14, getting angry at a sick person is useless. Try laughing with her instead. I constantly try to make my dad laugh; if it works once in ten tries, that single smile is worth more than all the money in the world. And it makes things a little easier for me, too. Tell her funny stories from the past, talk about everyday nonsense—anything to get that small smile. In those brief moments, everyone is finally far away from the problem and actually happy.

Gerald Bishop said:...
nimblepanther14—getting angry at someone who is sick isn't going to help anything; you might as well try to find the humor in it instead...

Of course I’m not letting that anger show... honestly, most of the time I don't even feel it. It only surfaces occasionally when I start spiraling into thoughts about everything that happened—why it happened, where it's all heading...

She’s planning to head to the hospital in Smalltown, USA... and that is what she wants.
In my view, it's probably for the best—for her sake and for her niece's too.
I can't help but worry, though—it feels like a path from which there is no turning back. 😢

nimblepanther14 said:Of course I’m not showing any anger... honestly, half the time I don't even feel it... it's just that every once in a while, when I start thinking about everything that's happened, why it happened, and where the hell this is all heading...

She’s going to the hospital in Smalltown, USA... and that's what she wants.
I really think it's the best move for her and her niece...
But man, I can't help but fear that this might be the point of no return... 😢

nimblepanther14, I truly know how much this hurts... I lost my own mom not too long ago...😢 but reading your words, I can see just how much you've done for her, and believe me, she knows it—and if this really is that "point of no return" like you said... just try to remember that you're the one making that journey so much easier for her by being there... so, I'll be praying that God helps your sister... and please, just hang in there, fight through it, whatever you have to do... keep posting here whenever you need to let it out... there isn't some magic cure for this, you just have to take it one day at a time, however you can...😢
lp

Gerald Bishop said:Angela Wright and nimblepanther14, after two days of non-stop tears and being an absolute emotional wreck, my dad told me—and I’m mostly just paraphrasing here—not to bury him until he’s actually dead! And honestly? He’s got a point. It doesn't matter how much I try to tough it out, because that heavy, crushing pain in your chest where you feel like you can't even catch your breath, plus all those mental movies playing on loop in your head... none of that helps when you're alone. I’ve found a little recipe for survival: you spend five or six days acting strong, and then one afternoon, you find some friends who are actually down to just sit with you while you cry, laugh, grab a beer, or maybe smoke a cigarette—even if you aren't a smoker—or just wander around in the rain getting soaked to the bone... you just take those few hours to escape, vent everything out, and then you come back feeling steady and solid enough to hold it together for the next five days. Thank God I have a friend who just grabbed me, threw me in the car, and drove me out into nature with a cold beer 🙂
And seriously, thank you guys so much for responding to this post; it means the world to know someone is listening from the other side without trying to charge you a dime 😉
nimblepanther14, being angry at someone who is sick doesn't do any good; you're better off trying to make her laugh instead. I’m constantly trying to crack a joke to make my dad smile, and even if it only works once out of ten tries, that one single grin of his is worth more than all the money in the world. Plus, it makes things feel a little lighter for me, too. Just tell her funny stories about stuff you remember, talk about all the random, stupid daily nonsense, and just keep going until you see that tiny little smile break through—because in that moment, you'll both be far away from the problem and just happy

Hang in there, sweetie... and keep laughing with your dad; your smiles are basically his lifeline..

Amy Torres4 Asks:
nimblepanther14, I know exactly how heavy this feels... I recently lost my mother too.😢 Based on your posts, it’s clear you’ve done an immense amount for her—and believe me, she knows that. Even if this truly is what you call a "point of no return," just take a moment to consider how much you've actually lightened her load along the way. You've made that path easier for her, even if it doesn't feel like it right now. May God help your sister through this... and as for you, just hang in there. Fight, endure, or whatever you need to do to get through it. Please, keep posting here whenever you need to vent or just process things. There isn't some magic formula or secret recipe for this—you just have to take it one day at a time, however you can manage.😢
lp

In recent years—ever since I stopped living under the same roof as my sister and my niece (her husband passed away quite some time ago)—we’ve drifted apart significantly. We were never exactly on the same wavelength to begin with, mind you, given how different our temperaments are, but I suppose that isn't really the point...
Even after I moved away, I did what I could to help them out—mostly through financial support. And honestly, my parents were over there quite often too...
Ever since she fell ill... I’ve been doing my best to make sure she has everything she needs—constant trips to pick up supplies, trying to be there more often than I probably should. Fortunately, we live on a street where people have been around for decades; they've known us since we were born. Because of that, someone is always popping in to check on us. It makes the house feel a bit livelier than usual, even now.
Now my mother has moved in with me—just a temporary arrangement, mind you—and honestly, thank God for her temperament. She has this inherent sense of stoicism about her that helps her weather everything life throws her way... it's a quiet strength, really.

... honestly, I’m just spinning a word salad here at this point ...