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

Carol Smith27 said:Here I go again... my dad just had surgery to remove a tumor. The doctor said it was a massive 9 cm beast. Interestingly, neither the previous specialist nor the follow-up colonoscopy caught it before the actual surgery. I honestly can't tell if that’s a good thing or a bad thing. Regardless, the surgery went well, and now we’re just waiting for him to recover. Does anyone know what the protocol is once he’s discharged from the hospital? When should we reach out to the oncologist? How long does it typically take to get the pathology report back? And is there any chance this could actually turn out to be something benign?

Once he's out of the hospital, you're essentially playing the waiting game for the pathology report to figure out exactly what you're dealing with. You're usually looking at about a 10-day wait. Once those results land, you take them straight to the oncologist if they're needed, and if treatment is necessary, that usually kicks off about 3 to 4 weeks after the procedure.
Given how large it was and the fact that there aren't any surrounding metastases, there's a decent shot it was something benign or at least a low-grade malignancy.
Bottom line: based on what's been said, things are looking positive for now.

So, I’m diving into the one topic nobody actually wants to touch...

Basically, my dad (he’s 72) is dealing with peritoneal carcinoma and primary colon cancer. We’re still waiting on the biopsy results to make everything official, but the tumor markers, CT scans, colonoscopies, barium enemas—everything else they’ve thrown at him—all points to this. The current plan is surgery on the colon followed by chemo for the rest, but since we're stuck waiting on that biopsy, he hasn't even been handed over to the oncology team yet.

We know how heavy this is. We know the fight ahead of us is massive and the prognosis isn't exactly looking bright. Usually, I’m the "fixer" in the family—the one who digs, researches, and hunts down every possible option for whatever goes wrong... but right now? I feel completely useless. I’m killing myself at work all day just to stay busy, then spending my nights breaking down in tears. I can't even move. I don't even know where to start... I'm just totally paralyzed.

I kept thinking about this thread tonight, so here I am. Please, just give me some direction. Any direction. Just something to help me get moving...

Amanda Anderson87 said:I'm ending up on the topic that nobody wants to touch...

Basically, my dad (72) has peritoneal carcinoma and primary colorectal cancer. We’re still waiting on the biopsy results for the final diagnosis, but between the tumor markers, CT scans, colonoscopy, and barium enemas—everything points to this being the deal. The current plan is to operate on the colon and then hit the rest with chemo, but since we're pending that biopsy, he hasn't been officially handed over to the oncology team yet.

We’re fully aware of how heavy this is—the fight ahead of us and the prognosis, which, let's be honest, isn't great. Usually, I’m the "fixer" in the family—the one who digs, searches, and finds a way out of any mess... but right now? I feel completely useless. I’m killing myself at work during the day just to stay busy, and then I'm falling apart and crying my eyes out at night. I can't even find the energy to move or take action... I'm just totally blocked.

I remembered this thread tonight, and here I am, hoping someone might give me a nudge in some direction. Any direction, really—just something to get me moving again.

Dear Carl Kern66, you should head over to the Cancer Support forum and read the story from our friend Vedran—his journey will give you all the hope and fighting spirit you need, no matter how dark things look. You've probably seen him in the news, and he used to share his story right here on this forum. To us, he’s a total HERO!

I know exactly what you’re going through and how much this hurts—it was the same for me when we first got my dad's diagnosis. If I can offer any advice, it’s to try and find your strength, keep your head up, and prepare for the fight, regardless of how brutal it gets. You didn't mention how your dad is holding up physically or mentally, though. That part is huge—he needs to be in the best shape possible because it makes the battle against the disease a lot more manageable.
As for the actual illness, there are a few smart targeted therapies for colorectal cancers; for instance, Avastin is often used for metastatic cases and has shown good results.
For now, the most important thing is not to lose heart and to make sure your dad doesn't spiral, either physically or mentally. Try to hold onto some optimism, keep his diet healthy, and maybe look into immune support supplements (like beta-glucan or raw propolis) since you’ll likely have to wait a bit after the surgery before starting chemo anyway.
Hang in there, stay strong, and try to keep a positive outlook!

Angela Wright said:Now that he’s out of the hospital, we’re waiting on the pathology report to see what we're actually dealing with. That should take about ten days. Once those results are in, we'll head to an oncologist if necessary, and if treatment is needed, it would likely start about three or four weeks after the procedure.
Given the size and the fact that there aren't any nearby metastases, there's a good chance it was something benign or at least low-grade.
In any case, things are looking positive for now, in layman's terms.

Thanks for the support... Dad is doing great, for the most part. He’s been up and walking for two days now since the surgery, and today I managed to change his bag with some help and advice from the nurses. Hopefully, he’s finally realized what he’s actually in for...

Carl Kern66, Rachel Wood27 hit the nail on the head. Things are going to look a whole lot brighter once the actual treatment kicks in. This phase—where you're just staring down a diagnosis and trying to wrap your heads around it—is easily the most brutal part mentally for everyone involved. It’s the struggle itself that builds character. You have to take it one day at a time and just tackle whatever obstacle is sitting right in front of you. You can't sprint toward a future that hasn't happened yet. And listen, save the tears and the pity parties for someone else; don't do that in front of Dad! Never forget that this is primarily his battle to fight. He's the one dealing with the physical reality, while the rest of you are riding the emotional wave. As hard as it is for you, he’s carrying an even heavier load because he has to navigate his own situation while simultaneously managing all of your emotions. Don't let him lose his sense of normalcy. He has a problem to solve, and he needs to focus on solving it.
Stay strong and stick together.

Rachel Wood27 said:Hey Carl Kern66, you seriously need to hop on the "Life Isn't All Bad" forum. Get over there!

Angela Wright said:Carl Kern66, honestly, everything Rachel Wood27 said is spot on.

Thanks!

I caught some of that "Cancer isn't a Death Sentence" documentary earlier—well, as much as my brain could actually handle before I totally checked out. Honestly? It left me feeling pretty fired up. Everything I read just hit a nerve. Once I finally get home and settle in, I’m going to get registered and hopefully get everything set up so I can actually join in.

Dad’s doing alright, I guess. The only real issue he’s dealing with right now is this brutal constipation that absolutely nothing seems to touch. Honestly, the guy has struggled with his digestion since he was a little kid—I swear, I remember him drinking Senna tea like it was water back when I was growing up. Well, things took a turn this morning. His doctor told him he’s headed into surgery next week. Because of where the tumor is sitting, they can't even use enemas anymore, so they have to go in. As much as he’s terrified of the actual procedure, he’s also kind of desperate for it to just be over. Everything else is fine, though. He isn't in pain, and mentally, he's holding up surprisingly well. He’s taking some propolis, and we’re going to talk to the doctor today about starting him on Graviola, since I’ve read everywhere that it’s great for the immune system. He’s a man of faith, so I think that's what's keeping his head above water. He gets scared and has these moments where he just crashes, but overall? He's doing better than expected. He’s always been such a worrier, though. Seriously, the man acts like a common cold is a death sentence—he'll whine and fuss like a total coward over the smallest thing. 😁 When we’re hanging out with him—which is basically most of my day—we’re laughing, talking about everything under the sun, or just venting about his illness. We end up crying at home, too. I mean, it’s not as constant as those first few days, but still. Personally, I’m holding it together okay, I'm right here by his side, but my older sister lives far away and she is absolutely losing it. We’re a tight-knit family, really close, so this hits hard. To top it all off, Mom’s been hospitalized twice in the last two months because of some stubborn hypertension that just won't quit, so yeah... life definitely isn't boring right now. 😛

The initial shock is finally wearing off, mostly. The tears are drying up, and honestly? I'm ready to go to war.

Carl Kern66, until things start moving again, you might want to take a break from the propolis, otherwise, it’s just going to cause more of a blockage.
Here’s a foolproof way to get things moving—I’ve tested this on my mom, myself after a heavy meal, and my kids. Head to a local pharmacy and pick up some liquid glycerin and a syringe. Fill the syringe with about 1-2ml of glycerin and administer it rectally. Usually, nature takes over within a few minutes. Honestly, one nurse I knew at the hospital after a massive steak dinner was ready to kiss my feet because this saved her from two days of pure misery. 😁
Let me know how it works out for you. 😉

Angela Wright said:Carl Kern66, seriously, maybe hold off on the propolis until things start moving again, otherwise you’re just gonna clog everything up even more.
Look, I've got a recipe for getting things moving fast—tried it on my mom, myself after a heavy meal, and even the kids. Go to a drugstore, grab some liquid glycerin and a syringe. Fill the syringe with about 1-2ml of glycerin and inject it rectally. Usually, things start moving within a few minutes. Honestly, one nurse at the hospital after my last surgery practically kissed my feet because this saved her life. 😁
Let me know how it works out. 😉

Thanks, we'll give that a shot. I'm going to call him now and tell him he needs to ask the doctor, because if he doesn't get permission, he won't even touch a sip of water. As spoiled as he is with us, he's probably the most disciplined patient the rest of the world has ever seen. 😉

The tumor is physically blocking the exit, which is why he can't go. But yeah, we'll try it regardless; it can't hurt him.

Thanks again, I'll let you know what happens.

Question :-(
I know some people swear by hemp oil, but I’m not really one to believe in miracle cures—everyone reacts differently. I was wondering if anyone here has any experience using it specifically for primary colon carcinoma that has metastasized to the liver. To give you an idea of where we are: a section of the bowel has been removed, and while we're still waiting on the official pathology report, it looks like it has spread across both lobes of the liver. The patient is 67 and otherwise in pretty good health. We’re just waiting on those biopsy results before meeting with the oncologist to discuss chemotherapy. Does anyone have advice or personal experiences with hemp oil, or perhaps anything else we should be looking into or keeping in mind?

Thanks so much!!!!!!!!!

feralwolf24 said:Question:-(
I know some people swear by hemp oil, but I don’t believe in magic bullets—there is no such thing as a universal cure. I’m looking for anyone who has actual experience using it specifically for primary colon carcinoma that has metastasized to the liver. A section of the bowel has already been removed; we’re still waiting on the pathology report, but based on what we saw during surgery, it looks like it has spread across both lobes of the liver. The patient is 67 and otherwise in great health. We are currently waiting on those pathology results to meet with oncology and eventually start chemotherapy. Does anyone have advice or personal experience with hemp oil, or perhaps anything else we should be considering alongside standard treatment?

Thanks!!!!!!!!!

By the way, this question is regarding alternative treatments.
Personally, from what I’ve looked into and seen firsthand in two specific brain tumor cases—where the results were pretty much as predicted—it's complicated. In one case, they started very early and the tumor progressed right on schedule, whereas in the other, they didn't start until the terminal stage.

My dad had his drain removed today... then he hit a really high fever of 102.2 this evening. Is that a bad sign?
Anyway, he says he feels fine otherwise. We're still waiting on the pathology report, but he thinks his blood markers look okay. Does anyone know anything about this? He mentioned his sister, who works on the unit, suggested the fever might just be a reaction to having the drain pulled. Could that actually be a thing?

Just wanted to give an update—we started radiation today. They’ve recommended 15 sessions. We also dropped the dex dose down to 8, which she'll take once the radiation is finished. We'll see how things play out from here, but I'll most likely be looking into taking her abroad for treatment after this stretch is over.

Alright, I figured I’d jump in here too. We got the news we were dreading yesterday—it’s adenocarcinoma. God, I hate this thing. 😁
The plan is to start with chemo first to shrink the tumor down, and then move toward surgery. We should have all the specifics by tomorrow.
After the absolute wreck of a day yesterday, my dad is actually doing a bit better today. Once he finally heard the official diagnosis, he had people dropping by to see him all day long. He even headed out to Mass in the afternoon, and man, he spent the day pacing up and down three flights of stairs and walking circles around the hospital. It completely wiped him out. By tonight, he was exhausted and started telling me that the cancer must be spreading incredibly fast because he felt so weak and drained so suddenly. That’s just my dad for you—a total softie. 😁 Of course he’s exhausted; he’s been wound up tight like a spring all day.
Anyway, we’ve cut off visitors for now, except for immediate family. He’s already kind of processed the diagnosis and the treatment plan; now he’s just waiting to get started. He’s scared, obviously, but he just says, "Whatever, it is what it is, let's go."
I really want to give him something to help him cope with the chemo once it starts and maybe something to boost his immune system. But honestly, I’ve been reading up on it, and there’s so much conflicting stuff online about what you can and can’t take during treatment. You read one thing, then another, and it’s just a mess.
Noni juice or aloe vera? Is any of that okay?

Amanda Anderson87 said:Just wanted to weigh in. We got the diagnosis we were bracing for yesterday: adenocarcinoma. To hell with it all. 😁
The plan is to start with chemo to shrink the tumor before moving to surgery. We should have the specifics by tomorrow.
My dad is doing a bit better today after the rough ride he had yesterday. Once the final diagnosis hit, he spent the whole day surrounded by visitors, went to Mass in the afternoon, and hiked up and down three flights of stairs three times—plus he walked several laps around the hospital. It completely wiped him out. By evening, he was exhausted and told me the cancer must be spreading fast because he felt his strength just drain away this morning. That’s my old man for you; he’s always been our little sensitive soul, 😁so of course he’s drained after being wound up tight all day.
Basically, we’ve cut off all visitors except for immediate family. He’s already processed the diagnosis and the treatment plan; now he’s just waiting for the clock to start. He's scared, sure, but he just looks at me and says, "Well, here it is. Let's go."
I want to give him something to help him weather the chemo and boost his immune system. I’ve been reading up online, and honestly, the internet is a minefield—it feels like there’s a list of things you can’t take during chemo for one reason or another.
Noni juice or Aloe Vera? Is that okay?

My mother tried taking noni juice, and it absolutely wrecked her liver enzymes. It was a nightmare. Personally, I'd stick to more traditional, local remedies. But look, generally speaking, you shouldn't be taking much of anything while actually undergoing chemotherapy. For example, antioxidants can bind to the free radicals that the chemo is specifically designed to target to kill the malignant cells, which could effectively neuter the treatment's impact. The smartest move is usually to focus on supplements between cycles to let the body recover and prep for the next round.
If you want actual guidance, I highly recommend Dr. Servan-Schreiber's book; he breaks down exactly what to choose and what to steer clear of, and why.

Angela Wright said:My mom’s been stocking up on noni juice...

Thanks so much for the heads-up. We were already gearing up to go all-in on noni and aloe vera juice. From what I can tell, his doctor is going to start him on some kind of immune booster today—not sure exactly what yet, but I'll check later. Honestly, we’re still total rookies at this whole thing. We’re still struggling to make sense of all the medical jargon and stuff.

And that book, I assume it's 'Anticancer: A New Way of Life'? Can I pick that up locally here in the States, or should I just order it online right now?

Also, did I say thank you 😉 for starting this thread and for being such a huge help to us? 🙂

Amanda Anderson87 said:Thanks so much for the heads-up. We were already gearing up to load him up on elderberry and aloe vera juice. From what I gather, the doctor is going to put him on some kind of immune booster today—not sure exactly what yet, but I’ll check later. We're still total rookies at all of this; we're still struggling to wrap our heads around the medical jargon and everything else.

And the book is probably 'Anticancer: A New Way of Life,' right? Can I pick that up locally here in the States, or should I just order it online right now?

Also, did I mention thanks 😉 for starting this thread and for being such a huge support to us? 🙂

That book is available in English at Vitamin Shoppe.
🙂

Is anyone else out there currently undergoing treatment for neuroendocrine tumors using Sutent? Please reach out if you are 🙂

Thanks, Angela Wright, I'll check it out.

Yesterday was just brutal. Things are looking really grim with Dad. We had a meeting with the oncology team, and they’re pushing for a stoma placement before we even start any actual treatment—they say it's the only way to improve his quality of life and get him strong enough to handle the therapy. Then we sat down with the surgeon, who basically told us the surgery is incredibly risky. He said he'll do everything he can next week, but we need to be prepared for anything. Honestly? We have no idea how to process this. We don't know what to do. It's all happening way too fast.

Dad is holding up okay, relatively speaking, though he's getting weaker by the day. After nine days of nothing, he actually had a bowel movement yesterday. He’s stuck with hospital food, drinking green tea and acidophilus, and he started taking some Prilosec yesterday. Mentally, he's doing alright. Every now and then, sadness hits him and he says he lies awake at night thinking about everything, but overall, he's hanging in there. His biggest concern is making sure Mom is taken care of and that we're doing okay. In a weird way, he seems ready for whatever comes next. We aren't. We're by his side most of the day. We walk the hospital halls as much as he can manage, grab coffees in the lobby, laugh, talk about sports or just total nonsense. We only bring up the illness when he wants to talk about it. He just needs to know we're fine, so we're all pretending we are...

I don't even know what else to say. I'm just hurting, and the tears won't stop... Most of you have been through this, so unfortunately, you probably know exactly how this feels.

Carl Kern66, hang in there. You just have to find a way to adapt; I know it sounds brutal, but that’s just how life works...

I think I’ve mentioned this before, but maybe some of my posts got lost in the old thread.

My dad is 78, and he was diagnosed with gastric adenocarcinoma with liver metastases—the surgeon described them as an apple-sized mass. He had surgery, a total gastrectomy, back on February 26th. He spent just under three weeks in the hospital and is finally back home now. He spent those first five days in the ICU, though, and honestly, those days were such a traumatic experience for him that he can't stop talking about it.

He cries quite a bit—it’s almost like his eyes just well up automatically whenever anyone speaks to him. He spends so much time reminiscing about himself and how things used to be, way back in the day. He barely leaves the house; we practically had to carry him to his follow-up appointment with the surgeon a couple of days ago. If I were to guess—just speaking off the top of my head, of course—I’d say his mental state, this deep depression, is really driving most of these physical symptoms of weakness. At the check-up the day before yesterday, the surgeon seemed happy with his physical progress, but he strongly urged Dad to move around more at least within the house, since he isn't going out yet. He even suggested getting outside for a bit, saying that physically, you should eventually be well enough to go grab a coffee somewhere nearby. To be honest, the doctor seemed genuinely shocked by Dad’s psychological state. Right now, my dad is using a cane, and with my mom's help, he manages to make it to the bathroom.

He’s eating small meals eight to ten times a day, sipping liquids in between. Unfortunately, the list of things he refuses to eat seems to grow a little longer every single day.

I’m really worried about this depression he’s clearly spiraling into. It’s tough, I know—going from being such an active person in his younger years to facing a serious illness like this is a lot to handle. But I also see signs of this stubbornness, this misplaced spite, if that makes sense. I see him pushing my mom quite hard—sorry if that sounds blunt—like "do this" or "don't do that"... or "hand me my cane," when the cane is literally sitting just twenty centimeters away from him. We bought him one of those battery-operated call bells—where the button stays with him and the chime is in the living room—so he can call for help. He rings it for absolutely everything, even just to have someone open a window, and I truly believe he could get up and do that himself if he tried. It would be for his own good, too, because the doctor told him straight up at the appointment, "Sir, if you just stay lying in bed, you're finished!"😢

I'm feeling a bit lost on how to help. We live in a small town, and I'm not sure where to find the kind of psychological support he clearly needs. It feels like we—the family, the grandkids—just aren't enough of an emotional safety net to pull him out of this slump.

And besides, if he’s this physically weak, how are we ever going to get him to a point where he’s fit enough for the chemotherapy that's coming next? 😢