Support resources for families dealing with cancer and other serious illnesses

Lisa Ward52 said:Man, I honestly don't know what to say... At the first hospital, they told us the attending physician decided against surgery. Unfortunately, I didn't get a chance to catch the actual doctor; I was just talking to a resident who could tell me if there would be an operation or not, but I couldn't make sense of the logic behind any of it. That said, I am actually quite happy with that department. The resident wanted to talk to me whenever necessary, he’d check in with my dad before rounds, they let me stay by my father's side at any hour, and the nurses were accessible and friendly. The attending is highly respected here in the States.
But I still can't wrap my head around the logic of radiation without surgery.
Look, I'm no doctor, and I shouldn't be sticking my nose into their business, but you do a little digging, you read up...

At the second hospital, they're saying they don't understand why surgery wouldn't be done. And the doctor there is also highly regarded.
He actually told me everything is okay—not "okay" because it's cancer, obviously, but that things aren't nearly as grim as we first understood from that first hospital.

So now I'm stuck with two completely different opinions from two very good doctors. Just great. 🙂

I'm leaning more toward the surgery, to get out that part that has metastasized to the lymph nodes. I think we're going to go with that option after all.

A lot of this comes down to individual experience. This first doctor probably has more experience using radiation to shrink a tumor so the targets pull back (since they're close), allowing whatever remains to be surgically removed later. In those cases, the procedure is much less invasive. But in your dad's case, that seems like a poor choice to me simply because waiting a month just to get in line for radiation makes the whole concept fall apart.

The second doctor clearly has a better relationship with the surgeons, and since the surgeon is excellent, his experiences are great too. The procedure itself might be more invasive, but let them remove whatever can be removed now, then move on to radiation and the rest of the treatment with some peace of mind.
To put it bluntly, this second option is far more acceptable to me, regardless of how invasive it is.

Thanks for clarifying.
It’s a bit clearer now, because I just couldn't wrap my head around this non-surgical option. So, if I’m following you correctly—in the first scenario, they would start with radiation, and if his body responds well to it, then they’d move forward with surgery?
Basically, they were trying to preserve his quality of life by avoiding a tracheostomy. A specialist told me that if they went the surgical route, they’d have to remove his wisdom teeth, larynx, and lymph nodes, which means he wouldn't be able to speak without a ventilator. Based on what you described, was the goal to find an alternative to that?

I went to the hospital today to pick up his CT scans, and one staff member there told me I really need to think everything through carefully. That actually gave me even more to chew on. Look, I know everyone thinks their own approach is best, but I felt like she was speaking to me as a real person.

The worst part for Dad is that he'll lose everything and won't be able to talk. But for me, the absolute worst thing would be sitting around doing nothing while we wait for radiation, praying that God doesn't let it spread any further.

Lisa Ward52 said:Thanks for explaining.
It’s starting to click now, because I just couldn't wrap my head around this non-surgical option. So, if I'm following correctly regarding the first scenario—they would start with radiation, and if he responds well to the treatment, they’d move toward surgery?
Basically, they were trying to preserve his quality of life by avoiding a hole in his neck. A specialist told me that if they go through with the surgery, they'd have to remove his wisdom teeth, larynx, and lymph nodes, meaning he wouldn't be able to speak without that device. Based on what you described, was that their way of finding a workaround?

I went to the hospital today to pick up the CT scans, and one of the staff members there told me to really think everything through. That actually gave me more to chew on. Look, I know everyone thinks their own side is best, but I could tell she was speaking to me from the heart.

The worst part for Dad is that he'll lose everything and won't be able to talk, and for me, the absolute worst thing would be sitting around doing nothing while it spreads further before we can even get to radiation, God forbid.

The real question is whether he could still avoid surgery and a laryngectomy after the radiation. It's much more likely the procedure would be less complicated, but I'm worried about the laryngectomy being a point of no return.😢
And honestly, having a laryngectomy isn't the end of the world, no matter how grim it sounds.
There are support groups for people who've had laryngectomies that prove life without a voice can be just as high-quality—some people even learn how to sing again. http://www.larynx-us.org/

Angela Wright said:The real question is whether he could avoid surgery and a laryngectomy altogether after radiation. Maybe the procedure would be less intense, but I worry the laryngectomy might still be inevitable 😢
. It isn't the end of the world to undergo a laryngectomy, regardless of how grim that sounds.
There are actually support groups for people who have had them, which really goes to show that living without a voice can still be a high-quality life—you can even sing. http://www.larynx-usa.org/

I get that. Personally, I’d rather him deal with the opening than lose him entirely. I keep trying to explain that to him, but he’s stubborn as hell and keeps pushing back. Whatever... I guess if he's arguing, it means he's still fighting.
Anyway, thanks again. 🙂
I'll keep you all posted on what happens next.

Angela Wright said:I honestly don't get how people pull that off. From what I know, it’s illegal to import any kind of medication or supplement from the States unless it's already registered here in the US.

The rules are strict for actual meds, but for vitamins or anything labeled a supplement, it’s usually not an issue. 🤷

We've been ordering stuff from the US for years because the prices here are insane. 😵
And we've never had a single problem. Occasionally we have to pay customs if we go over the limit, but that's about it. Given everything we deal with regarding health issues and trying to manage chronic conditions, we've ordered a ton of different stuff over the last few years.
You can find the exact same things locally, but they're a rip-off. For example, this Solgar Beta Glucan sells here for more than double the price.

We even order specific American brands that aren't even available stateside, and again, zero issues. You just have to be smart about it—stick to reputable sites and trusted brands.

I don't even know where to start. Now that my dad has finally started eating again after nearly three months of nothing, his digestion is acting up—it's a mess. He’s having rectal pain, though it isn't constant—just whenever he has to go to the bathroom. Is it possible that since he wasn't eating and was mostly just on IV fluids, there's old stool stuck in there, and now that he's eating, the new stuff is pushing against it and causing all this pain?

Because honestly, there aren't any other pains besides when he's using the restroom—he's actually feeling hungry again and eating, so he seems to be recovering and doing better overall.

But still, he hasn't eaten much and has just been hooked up to an IV for months...

They drew blood yesterday to check for markers for lung, liver, gallbladder, colon, stomach, and prostate cancer... does anyone know how long it usually takes to get those results back?

His bowel movements are regular and a bit softer, probably because he's getting so much fluid...

I'm just really worried. My grandma passed away from colon cancer, and while my dad never had digestive issues, didn't eat junk, and stayed at a healthy weight, I can't help but worry.

He's also slowly recovering from an amputation, so it's just this rectal discomfort hitting him right when he needs to use the toilet.

And then today, my mom found out her brother was diagnosed with colon cancer too.

😢.

Chloe Gray5 said:I honestly don't know where to start. Now that my dad has finally started eating again after nearly three months of nothing, his digestion has really kicked into gear. He’s experiencing rectal pain—it isn't constant, but it hits whenever he has to go to the bathroom. Is it possible that since he wasn't eating and was mostly just on IV fluids, some old stool stayed stuck in his rectum, and now that he's eating, the new waste is pushing against it and causing this pain?
Aside from that specific discomfort when he needs to use the restroom, he doesn't have any other pains. He's actually feeling hungry again, eating, and recovering well, which is a good sign.
But remember, he hasn't eaten and has just been bedridden on an IV drip for months...
They drew blood yesterday to check for various cancer markers—lung, liver, pancreas, colon, stomach, prostate... How long does it usually take to get those results back?
His bowel movements are regular and a bit softer, probably because he's getting so much fluid.
I'm just so worried. My paternal grandmother passed away from colon cancer. My dad never had digestive issues, never ate greasy junk food, and never struggled with weight.
He's slowly recovering from his amputation, and this rectal issue is the only thing bothering him, and even then, only when he's on the toilet.
And then today, my mom found out her brother was diagnosed with colon cancer too.
😢.

In my opinion, his digestive system is just trying to find its rhythm again after being dormant, so that's likely why he's uncomfortable. It should pass.
Usually, you're looking at a few days for marker results. Stick to things like steamed chicken and rice to let his gut recover gently; try not to stress too much over it.
I am so sorry to hear about your uncle.😢

Angela Wright said:I think his gut is just settling back in—that’s probably why he’s feeling a bit off. It’ll pass.
Usually, you're just waiting a few days for the lab results. Just stick to light stuff like chicken and rice so his system can recover without being too much work for him.
So sorry to hear about your uncle 😢

We're all praying Dad turns out okay—everything is looking up, actually. He’s starting to get his appetite back, which is huge, and Mom is basically playing chef, cooking whatever he craves and bringing it to the hospital every day.
Plus, his blood work improved—everything is pretty much back within the normal range now.
They’re running a CT scan on his head just to cover all the bases, even though his brain scans looked fine; we're just hoping they're being thorough because they're doing everything by the book.

As for my uncle, Mom talked to him today—he’s been dealing with some bacterial colitis that caused major weight loss and weakness over the last three months, which is why he went in for a colonoscopy. It turned out they found rectal cancer, but thankfully it’s an early-stage adenocarcinoma and hasn't spread, so they're looking at radiation and chemo. We’re staying positive that he'll pull through since it was caught so early.
He’s actually a doctor working over in Germany, so I'm confident he’ll get top-tier care there and be just fine.
Mom is really worried about Grandma, though—she’s devastated. Being older, she thinks everyone is just sugarcoating things to protect her, and she’s convinced the worst is coming.
I honestly have so much respect for my mom right now. She’s juggling worrying about Dad, my uncle, and now her own mother.

And thanks for everything, seriously. Waiting on test results is the hardest part—you try to tell yourself everything will be fine, but until those papers actually come in, hearing other people's experiences and thoughts really helps keep us steady.

Angela Wright said:You can pick it up at any local pharmacy—prices fluctuate quite a bit, maybe around $15-$$267 per bottle, though I suppose the concentration varies too. Personally, I wouldn't touch unknown supplements; you might end up with a massive stockpile that tastes absolutely revolting. Honestly, online marketplaces are crawling with desperate people trying to offload high doses just to get a tiny refund.

Susan Gonzalez22 said:Regarding beta-glucan—we actually order my mom's from the USA. I usually go with unknown since they seemed reliable enough. I think we pay about $20 for 60 capsules including shipping, whereas here it’s closer to $83 I believe.

Though, when ordering online, you really have to be careful about who you're buying from—there are all sorts of scammers out there.

We've had some experience ordering these kinds of things before, unfortunately, due to other health issues.

Around here, prices start from $83 depending on the manufacturer, the strength, and the quantity.

Thanks! Pharmacy prices seem all over the place, so I was wondering if anyone found a better deal? And maybe a recommendation for a brand? Maybe unknown? Basically, I'm just looking for the best value for money.
sly47, maybe send me a DM with a link (if that's allowed here), because I'll probably grab the first round locally and then switch to ordering online.

My mom called me today... honestly, I lost it the second I heard her
voice... and then she has the nerve to tell me not to cry.
I'm so incredibly heartbroken right now that I can't even find the words to describe it...

Linda Morales66 said:My mom called me today... honestly, I lost it. I couldn't stop the tears the second I heard her
voice... and then she tells me not to cry...
I am just so heartbroken right now, I can't even find the words to explain it...

🙂
There isn't a single soul on this planet who will love you more unconditionally than your mother, and in moments like these, she’s the only one who's going to give it to you straight.
Listen to your mom, honey! There will be plenty of time to cry later, but right now, you need to find some peace. The fact that she reached out to you is everything.

Angela Wright,

(or anyone else following this 🙂)

Do you happen to know what this part of the biopsy report actually means?

show negative immunohistochemical reaction to PR, weakly positive for ER, nearly 90% of cells positive for p53, almost 100% positive for WT-1, and 80% positive for Ki-67

?

rowdyfox12 said:Angela Wright,

(or anyone else following this thread 🙂)

do you happen to know what this part of the biopsy report means

?

I can't make any guesses without seeing the full context. Just type out the entire report; I'm sure one of the doctors on here will give you a much smarter answer than I can.

Angela Wright said:Without context, I'm not guessing. Just post the full report. I'm sure one of the doctors on here will have a better take than I do.

fine, thanks
thought you might recognize what the abbreviations meant just by looking at them😳

here's the report

rowdyfox12 said:Alright, thanks.
I thought maybe you’d just know off the top of your head what those abbreviations meant. 😳

Here are the results:

Specifically, the part that was bothering you seems to be about the analysis itself—basically, how the tissue reacted during the staining process. Those are the technical benchmarks used to "categorize" the sample and ultimately reach a diagnosis. At least, that's my best guess.
What we know for certain is that we're looking at an adenocarcinoma that has spread into the peritoneum. What really trips me up, though, is this note saying they couldn't find any intact ovarian or fallopian tube tissue, either macroscopically or microscopically. Does that mean it was already removed, that they didn't receive it, or did the tumor just completely obliterate everything? 🤷
I'm hoping an oncologist or someone with more specialized experience gets back to you soon.

Angela Wright said:Specifically, what's bothering you seems to be about the analysis itself—how the tissue reacted during the staining process. Those are the technical parameters used to "categorize" the sample and reach a diagnosis. That’s just my guess.
What we know for sure is that it's an adenocarcinoma that has spread to the peritoneum. What's personally tripping me up is this note saying they couldn't find any intact ovarian or fallopian tube tissue, neither macroscopically nor microscopically. Does that mean it was already removed, they didn't receive it, or the tumor just completely wiped everything out???????🤷
I'm hoping the specialist or someone else with more experience gets back to you.

thanks 😉

I assume the oncologist will go over the results in detail with Mom. She has an appointment on August 9th to start her first round of chemo.

But I like knowing things immediately, especially when it's something like this.

rowdyfox12 said:Angela Wright,

(or anyone else following this thread 🙂)

Do you happen to know what this part of the biopsy report means

?

Isn't the first section of this report just checking hormone sensitivity? PR stands for progesterone, and ER is for estrogen. Based on this, it looks like hormone therapy probably won't be an option. 🤷

Robin Rodriguez5 said:Doesn't this first part of the report cover hormone sensitivity? You know, PR for progesterone and ER for estrogen. Based on these results, it looks like hormone therapy probably isn't even an option.🤷

Most likely. So, like I mentioned before, we're talking about the specific reagents used during the typing process.

Hello everyone 🙂 I only registered on this forum for one specific reason, and that is to ask for your guidance. My mother informed me a few days ago that her sister has been diagnosed with a brain tumor, and according to the doctors, she only has a few months left. I am not entirely sure if they mean those months apply specifically to the duration of her treatment, but that is how I gathered it. Regardless of whether she undergoes chemotherapy or not, they are saying there is no chance of survival. My aunt is only 38, with two young children—ages three and five—plus a husband. As far as I know, she’s never dealt with anything serious before; she’s always been this vibrant, funny, full-of-life woman, and now this... 😢 To be honest, she still looks quite healthy right now (she says she isn't in any pain), and you wouldn't guess she was ill, though I realize that is likely temporary. Perhaps she is even masking it. I am incredibly close to her and feeling terrible, but that is secondary to the actual reason I am reaching out. The issue is that my aunt is flatly refusing all medical intervention. No radiation, no chemo, not even alternative therapies. My grandmother—her mother—passed away from cancer a few years back, and she watched her suffer through those final two years (you know how it goes...), seeing how she was constantly depleted by the chemo, and she simply refuses to go through that again. She says she wants to spend these last few months 😢 living life to the fullest for as long as possible, and once she can no longer do that, she wants it to be quick... No drugs, no therapy...

From what my mom tells me, my uncle is trying to respect her decision, even though it's clearly breaking his heart. My mother, however, insists that my aunt is being selfish, and now they aren't even speaking 😢

I am 17, so I really don't know much about any of this. I know very little about glioblastoma, and the whole situation regarding my aunt's current state is still a bit blurry to me. My mom doesn't want to talk to me about it much because she thinks it will weigh me down. But I just want to be able to support both her and my aunt 😢 I have only seen my aunt once since finding out the truth (she lives in a different city), and I tried to sit down with her to offer some support, but somehow she ended up being the one comforting me 😢 I honestly don't know...

Can anyone tell me what we should expect if she continues to refuse treatment? How does the disease progress? How long might she live if she chooses not to accept any care? Should we be pushing her to change her mind? Is there any legal framework in the US that would compel her to undergo some form of treatment? And most importantly, how should I even act toward her? I am just so confused and heartbroken 😢

Forgive me for the long vent, but I just needed to get this out somewhere. Thank you in advance for any answers you can provide. 🙂

unknown Aaron Rodriguez3, I am so incredibly sorry, and your story really hit me hard 😢

My mother had surgery for glioblastoma and turned down chemo and radiation for those exact same reasons. After six months, she suffered a relapse, fell into a coma that they barely managed to pull her out of, and then finally decided to go through with the chemo and radiation.
Unfortunately, there is no cure here; radiation and chemo are just meant to slow the disease down 😢. While how fast it progresses is different for everyone, the trajectory is always the same—it’s like a power grid shutting down section by section, from the limbs until everything is completely paralyzed. My mom was bedridden and totally immobile for a full six months before the end. I hope she wasn't in pain, but she couldn't tell us. Toward the end, her treatment consisted of steroids to manage brain swelling and phenobarbital for seizures.

Regarding the actual treatment, it’s a combination of radiation and unknown in capsule form. My mother didn't have any major side effects other than fatigue and hair loss, so it isn't necessarily unbearable. Not every chemo regimen is the same for every type of cancer, and the side effects vary wildly. Try explaining that to her so she can give it one more thought. When you're dealing with kids that young, you have to fight for every single extra day you can get.
But regardless of what happens or what she decides, you have to respect her choice, no matter what it is. I really hope your mom reconsidered being angry with her sister. At the end of the day, this is her cross to bear, her illness, and she is the one suffering most. As a sister, her primary job should be supporting whatever decision is made rather than judging it. Don't waste precious, quality time being angry. Later on, it will be devastatingly hard, and she'll regret the lost time, but there's no going back. 😢
Just be there for her—without judgment, without bias, unconditionally—and breathe in every moment you have left together.