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

Dana Martin87 said:I honestly don't get this whole GIST thing. I was reading that it usually starts in the stomach, but it can also be in the colon, like what happened with my dad...
Look, let's break this down. What’s actually the distinction between a GIST located in the stomach versus a stomach tumor that has spread, or a GIST in the colon versus a standard colon cancer?

It all comes down to the cellular makeup. A GIST is a sarcoma, which originates from connective tissue, whereas a carcinoma grows from the epithelial cells of the organ itself. Because their cellular structures are fundamentally different—and because of where they sit in the body—they react completely differently to medication and radiation. You can't treat them the same way. Generally speaking, sarcomas don't respond to chemo or radiation nearly as effectively as carcinomas do. In most cases, you're looking at the best possible outcomes if the entire tumor can be successfully surgically removed.

Angela Wright said:The difference lies in the cellular makeup. A GIST is a sarcoma originating from connective tissue, whereas a carcinoma develops from epithelial cells within an organ. They require different treatments because their distinct structures and locations mean they react differently to drugs and radiation. Sarcomas don't respond to chemo or radiation quite the same way carcinomas do. You get the best results if all the tumor tissue can be successfully removed surgically.

We haven't managed to see the doctor yet... 😢 I only know what he told my dad: that he’s happy with how the surgery went, that he did exactly what was planned, and that they’ll start either radiation or chemo in six months.

It sounds off to me... Why wait six months? Is that just how long it takes for the body to bounce back from surgery?

Dana Martin87 said:We haven't managed to see the doctor yet... 😢 I only know what he told my dad: that he's happy with how the surgery went, he achieved what was planned, and they'll decide whether to start radiation or chemo in about six months.

It feels a little strange to me... Why wait six months? Is that just how long it takes for the body to recover from surgery?

If we're talking about GIST (and you really should wait for the final pathology report to confirm the diagnosis), chemotherapy doesn't actually work on it. Radiation is usually reserved for exceptional cases, mostly for palliative care—meaning just managing symptoms rather than aiming for a cure.
Once a GIST diagnosis is confirmed, the first step is determining if the surgery was radical enough to remove the entire tumor mass. To figure that out, an abdominal CT scan or a PET/CT is necessary. If those scans show any remaining tumor that can't be operated on or any metastases, the gold standard treatment is imatinib mesylate (Glivec is the brand name for the original drug, though generics are available here in the US). Usually, you start at 400 mg daily, potentially increasing to 800 mg if the disease progresses. Sunitinib (Sutent), which was mentioned earlier, unfortunately isn't covered by Social Security Administration plans for GIST treatment (though it is registered in the US for use after a patient progresses past imatinib therapy).

Angela Wright said:One could simply be candid and explain that they have this specific condition and that issue, and then there is that other concern... there is no need to tell someone they are facing mortality, but rather to say, "Here is where we stand; we will do everything possible to aid your recovery, you will receive care here that would be impossible to coordinate at home, and our goal is to restore your quality of life, provided you have patience and time."
All of this can be communicated in a manner that is both normal and acceptable to everyone...

It seems as though our doctors and nurses spend their days practicing how to be even more discourteous, as if finding a shred of empathy were an insurmountable task for them...😠

I was reading an article the other day regarding the proper way to inform someone that they are facing a difficult illness and what lies ahead. Studies suggest that patients respond much better when a physician takes the time to provide an introduction, explaining which tests have been completed and which are pending, before finally delivering the actual news after thirty or forty minutes have passed...

My mother is practically vomiting every time she tries to speak, and it is not just the illness; it is the fact that she isn't even provided with a basin to vomit into, yet the nurse actually becomes angry with us simply for asking for one!?! I find myself wondering if this level of service is standard across all hospitals in the country...🤔

As of today, my mother still hasn't received her antibiotics. The doctor instructed her to take them in capsule form, but she is unable to do so due to the vomiting. They haven't even administered intravenous nutrition, despite the fact that > suggested it...

I am feeling a slow, simmering rage because, for the second time in the last year, we are enduring these exact same struggles and battles to try and make things easier for our loved ones...

Dana Martin87 said:We haven't actually sat down with the doctor yet... 😢 All I know is what he told my dad—that he’s happy with how the surgery went, he accomplished exactly what was planned, and they’ll decide whether to start radiation or chemo in about six months.

That sounds a bit off to me... Why wait six whole months? Is that just how long it takes for the body to bounce back from surgery?

It’s standard to allow at least a month for recovery after surgery before jumping into oncological treatment.
Which doctor were you even talking to? At this stage, an oncologist is the only one qualified to give you a definitive opinion, specifically specialists like those at Rib Santek or Duke who focus exclusively on sarcomas.

Skegro is taking over on Monday. No word yet from the oncologists. I finally got some news from my doctor, but it was third-hand: an intestinal tangle. They found cancer at the splenic flexure of the colon.

That's all I have... Does this mean it isn't GIST after all, despite what they thought back in Mostar?

@ Regarding the "flexure"... They probably didn't write that part down correctly, right?

Nancy Hernandez43 said:It honestly feels like our doctors and nurses spend their entire shifts practicing how to be as dismissive as possible. It’s almost impressive, really—as if they wake up every morning specifically honing their ability to be rude. Finding even a shred of genuine empathy in those hallways seems to be an impossible task. 😠

I was reading an article the other day about how to break the news to someone that they’ve been diagnosed with a serious illness and what their road ahead looks like. It turns out there's actually some science behind it. According to several studies, patients tend to process the news much better when the doctor takes a moment to build a foundation first. Instead of just dropping a bombshell immediately, the physician should start with an introduction, walk the patient through the tests that have already been completed, and explain what upcoming diagnostics to expect. Only after about thirty or forty minutes of establishing that context and rapport does the doctor finally get to the core of the matter.

My mother is practically gagging every single time she tries to speak, and she won't even settle down unless she’s been handed a basin to throw up in. To make matters worse, my sister is actually getting annoyed with us just for asking where the damn basin is! Is this standard procedure at every hospital in the country, or have we just hit a special kind of jackpot here? 🤔

Mom hasn't even started her antibiotics yet. The doctor instructed her to take them in capsule form, but she can't keep anything down without vomiting. To make matters worse, they haven't even started her on any IV nutrition, despite Aviano suggesting it would be the best move.

I’m feeling a bit on edge, honestly. It’s been just a year since we went through this exact same ordeal, and here we are again, fighting the same uphill battles just to make things even a little bit easier for our loved ones. It’s exhausting.

Go straight to the head nurse, demand to see the clinic director, and start threatening to call the local news and TV stations. That is exactly what my sister-in-law did when they basically ignored my father-in-law right after his surgery. The second she made a scene, everyone suddenly found their motivation, stepped up, and he finally got the care he actually deserved.
He wasn't even in any condition to eat or drink.

Amanda Miller69 said:Go straight to the Head Nurse, demand to see the Chief of Medicine, and start threatening them with calls to the local news and major networks. That is exactly what my sister-in-law did when they essentially "neglected" my father-in-law following his surgery. Suddenly, everyone was scrambling to be helpful, and he finally received the care he deserved.
He wasn't even able to eat or drink anything...

I will certainly try. However, I feel I must let my father handle things the way he sees fit, given that he has managed everything on his own up until now without much issue. My mother’s oncologist returns this Monday, and I am certain the treatment plan will be adjusted then...

In this particular facility, making threats won't achieve much. I attempted that last year, and the reaction was nothing short of terrible...

Amanda Miller69 said:Go straight to the head nurse, demand an audience with the clinic director, and start threatening them with the local news and major networks. That is exactly what my sister-in-law did when they essentially "ignored" my father-in-law following his surgery. Suddenly, everyone became incredibly attentive, and he received every bit of care he required...
He hasn't been able to eat or drink anything either...

It isn't E. coli. They suspect it might be gallstones, perhaps an atrophied kidney, a hernia pressing against the stomach, or even just the reaction to her previous therapy versus what she is receiving now. She has decided to manage her own hydration, since the hospital's offerings of toast and tea simply don't agree with her. She is acting quite manic...🙏 though I suppose anyone would be if they were suffering from such intense hunger...

Day after day... 🙂

My mother-in-law and I visited my father-in-law this past Saturday, and honestly, it was pretty grim. He’s struggling to swallow anything, coughing constantly, and having bouts of shortness of breath. I don't think he even fully realizes how close to the end he actually is.
He admitted himself that things aren't looking great.
Watching him try to take a sip of water is heartbreaking; it just ends up coming out of his nose. They can't even put in a feeding tube because his esophagus is completely blocked.
We had a talk with the doctor, and he wanted us to be the ones to break the news—not necessarily by saying "you're dying," but by making sure he understands just how critical the situation has become.
Since this hospital has a very religious atmosphere, they don't believe in being dishonest with their patients.
I did ask if the psychologists or psychiatrists on staff could handle the actual conversation, just so they could deliver the news with a bit more gentleness and tact.
On top of that, the doctor explained that since my father-in-law isn't really eating or drinking on his own anymore, relying on IV fluids won't offer any long-term solution; his body is simply starting to shut down.
The hospital itself is... well, it's a typical geriatric ward. It looks newly renovated, but man, the smell is awful. It's that unmistakable scent of urine and everything else; it's terrible. Everything seems clean enough, but I suppose when you have people working in such close quarters, those odors just linger.
The doctor was fine, though—calm, polite, and straightforward about everything.

Just another quick question for the group; a friend just mentioned that visiting hospitals while pregnant isn't exactly the best idea—especially places like palliative care units, where you might pick up some nasty infection or something similar.
To be honest, I had the same thought this past Saturday; it doesn't feel particularly healthy. They’re planning on going again next weekend, so I’m debating whether my husband should just go with his mother instead. I really don't want to risk anything, and frankly, I'm worried about the baby. As much as I adore my father-in-law, my child comes first, period.

Amanda Miller69 said:Another question; a friend just told me I shouldn't be visiting hospitals while pregnant, especially places like palliative care, just in case I pick up some nasty bug or something.
It crossed my mind this Saturday too—it probably isn't the healthiest move. They’re planning to go again next weekend, so should my husband just go with his mother instead? I don't want to risk it; I'm scared of putting the baby at risk. No matter how much I love my father-in-law, the kid comes first. Always.

I think your friend is right. You've got a new life on the way—protect it. Besides, you aren't really helping your father-in-law by being there anyway.

Amanda Miller69 said:One more thing; a friend just mentioned that visiting hospitals while pregnant isn't exactly a great idea, especially places like palliative care, just so I don't pick up some nasty infection or something...
It actually occurred to me this past Saturday that it might not be the healthiest move either. They’re planning to head back next weekend, so I'm wondering if my husband should just go with his mother instead? I really don't want to risk the baby, and as much as I adore my father-in-law, my child comes first and is the absolute priority...

It’s risky for anyone, but when you're pregnant, you aren't just worrying about germs—you have to consider the stress as well. You can enter and exit the hospital with sanitized hands and wear a gown if they provide one... but there is never any real guarantee that you won't catch something...

Around here, we’ve been dealing with a sudden wave of stress and low morale after a single night where four patients on the ward passed away. As for my mother, there hasn't been much progress, other than all of us trying to get her to eat and drink on her own. We're taking it day by day, hoping she'll be home by the end of the week...

I’ve made an agreement with my husband that I won’t be heading back to the hospital for now; the baby is our absolute priority right now, and honestly, there isn't much I can do for my father-in-law anyway.
He's doing poorly—he told my mom over the phone that he can't even swallow, and I just don't know how much longer he can hold out.
I'm praying to God that He takes him home soon, just so he doesn't have to suffer through this anymore.

Listen, Fiona...😢
Just try your absolute best to stay calm. Take care of yourself.

There’s nothing more cruel than blocking legal access to euthanasia. When my puppy was dying in agony from parvovirus, we couldn't just sit there and watch her suffer—we had to beg the vet to put her out. If it's that bad for an animal, imagine watching a human endure unbearable pain. It's sickening.

My dad's being sent to the VA hospital in Annapolis. Does anyone know what the conditions are like there?

I drove my husband and father-in-law over to his dad's place today. I didn't go inside the hospital myself; I just stayed out in the car.
My father-in-law isn't doing well at all. He can't speak, he’s struggling to catch his breath, and his wife keeps mentioning how cold his feet feel. Honestly, it feels like we’re just counting down the days.
The only thing on his mind is his daughter. It seems like he won't be able to pass away in peace until he sees her, but she can't make the trip right now because she's stuck in Sweden with a three-week-old baby and simply can't travel.

I just want this whole ordeal to reach its conclusion so we can finally move forward.

It’s official. My father-in-law passed away about an hour and a half ago. :-(

Amanda Miller69 said:It’s over. My father-in-law passed away about an hour and a half ago. :-(

Oh man, Fiona, I am so incredibly sorry. 😢
Please accept my deepest and most sincere condolences.