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

@neasden
The moderator over on the other forum gave you an excellent, incredibly thorough breakdown, and honestly, I couldn't agree with her more on any of it.
Hang in there and try not to turn yourself into your own worst enemy by making things harder than they need to be—just follow that advice and eat!
You’ve got a fight ahead of you and you're going to need every bit of strength you can muster, but once things really get moving, everyone usually starts feeling a lot better. This initial shock to the system is always the absolute worst part. Just deal with things as they come and take it one day at a time.

I'm hopeful that everything will turn out alright. Thank you all!

Ronald Evans33 said:Hi everyone,
I'm new here and could really use some advice.
I found out today that my grandfather has cancer. It hit me pretty hard because we are incredibly close; he’s the one who raised me since I grew up without a father.
Anyway, I won't ramble too much.
I'm looking for some perspective on whether or not I should tell him.
My mom, aunt, and grandma have all decided they aren't going to say anything to him. They’re actually meeting with his doctor tomorrow to discuss whether he should undergo surgery or not.
Personally, I feel like it's unfair of them to keep him in the dark. He should have the right to decide for himself—after all, it's his body, not theirs. :-(
It’s an incredibly heavy situation, I admit, but I just don't think they're doing the right thing. My grandfather is mentally sharp and perfectly capable of making his own decisions, so I can't help but feel they're wrong
to withhold this from him...

If I were in your shoes, I'd tell him. There's honestly no point in keeping secrets; he’s bound to find out eventually, whether it's through a doctor, a slip of the tongue, or by seeing the medical reports himself.
Perhaps the best approach is to soften the blow—you don't have to be blunt about how dire everything is, and you can certainly try to stay optimistic about the treatment options.

In my experience, my in-laws kept my father-in-law's diagnosis a secret. We didn't realize anything was wrong until three months later when he ended up in the hospital, and even then, only because I pushed my husband to grab the medical files and see what was actually happening.
If we had known sooner, there might have been more we could have done to prepare.

It’s me again. I have another question regarding whether doctors prescribe Facta ointment specifically for hard stools. I asked my mother why she was using it, and she mentioned that was the reason. If that's the case, then she might not be dealing with hemorrhoids, which actually makes me even more anxious about the occult blood found in her stool. Her bowel movements seem normal now—at least according to her—but I''m unsure how colon cancer typically presents in this regard. Does the stool consistency fluctuate, or is it a constant cycle of constipation and diarrhea? Also, is it possible for blood tests to yield false positives? I apologize if these questions seem redundant while we're still waiting on a definitive diagnosis, but I am honestly terrified and don't have anyone else to turn to without turning to the internet, which only serves to increase my panic. Thank you in advance.

Amanda Miller69 said:I’d honestly tell him there’s no point in keeping secrets. He’s going to find out one way or another—either from a doctor or someone else—and he’ll see the truth right there in his medical reports anyway.
Maybe just try to soften the blow a bit? Like, don't sugarcoat it entirely, but maybe tone down how intense things look so you can stay optimistic about the treatment plan.

In our case, my in-laws kept it a total secret that my father-in-law had cancer. We didn't even realize things were going south until three months later when he ended up in the hospital. I finally had to push my husband to grab the lab results and actually face reality.
If we’d known sooner, we might have been able to get ahead of it and do more.

Thanks for the support! That’s exactly how I feel about it too. Especially since the doctor taking over his care kept us in the dark for almost a month. It wasn't until we started prepping all the paperwork to head to Washington, D.C. for a second opinion that she finally spoke up... Honestly, if we hadn't asked for those files, she probably wouldn't have said a word.

It’s been a while since I last posted, mostly because there hasn't been much news regarding my mom's condition. After her fifth round of chemo, her CA-125 marker jumped by 184, so now she's sitting at 1118. Because of that, they didn't even bother giving her the sixth chemo session; the doctor basically said there's no point anymore. She had a CT scan done, and the results show that the 33 mm secondary growth hasn't changed, but there are quite a few new spots on the liver. The pelvic area and other organs look okay for now.
Mom has been prescribed some pills now—specifically Endoxan 50 mg (one tablet twice a day) and Megostat 40 mg/ml.
The doctor mentioned she should take these for two months before coming back for a follow-up. She needs to get her markers checked right before the appointment, because apparently, these drugs can't really show any effect until those two months have passed, and only then can we expect the markers to drop. I'm just wondering, is it actually true that you can expect a drop in markers from these tablets?

Lp
Maya

Robert Ortiz4 Asks:
Back again. I have another question: do doctors actually prescribe Facta ointment to deal with hard stools? I asked my mom why she was using it, and she said it’s for that exact reason. If that’s the case, then she doesn't have hemorrhoids, which honestly just makes me more terrified about the possibility of occult blood in her stool. She says her bowel movements are back to normal now, but I don't know—what is the actual reality with colon cancer? Does the stool consistency fluctuate, or is it a constant cycle of constipation and diarrhea? Also, can blood tests ever yield a false positive? Sorry if I'm asking a bunch of redundant questions while we're still waiting on a clear diagnosis, but I am seriously freaking out here and I don't have anyone to turn to—besides the internet, which only serves to make my anxiety ten times worse. Thanks in advance!

As far as I know, when you're dealing with hard stools, you either go with stimulant laxatives like Dulcolax or just use glycerin to lubricate things up. According to Facta:

What exactly is Facta ointment, and what is its actual purpose?
Hemorrhoids usually bring a whole mess of symptoms along for the ride—we're talking pain, bleeding, constant moisture, and that unbearable itching. As for the main active ingredient in this medication...
The Facta is that polacresulen targets only the diseased tissue when dealing with a hemorrhoid, leaving healthy tissue completely untouched. It basically acts as a protective coating.
It constricts the lesions and tightens those tiny blood vessels. That’s how you stop the bleeding and finally get rid of that constant oozing and burning sensation.
That increases blood flow, which naturally speeds up the healing process. Plus, the antiseptic properties of Facta help prevent infection.
It's about colonizing the underlying cause of the illness to effectively prevent or wipe out inflammatory processes. In this case, we're looking at using a topical anesthetic like Cinchocaine.
It helps ease both the pain and the itching.

Honestly, I’d say she’s just too embarrassed to admit it.

Ronald Evans33 said:Thanks for the support; I feel the exact same way. It’s especially frustrating because the doctor who took over his case kept us in the dark for nearly a month. We didn't hear a single word about it until we started prepping all the paperwork to head to Washington, D.C. to get a second opinion. Honestly, if we hadn't been proactive enough to demand those files, she probably would have kept us in the dark forever...

Look, a doctor is legally obligated to keep a patient's medical information private from any third party, so there's really no point in being angry at her for that. However, she absolutely had an obligation to be transparent with him about his own condition.

Angela Wright said:From what I understand, when dealing with hard stools, you’d typically use small laxative suppositories, something like Dulcolax, or just some glycerin to help lubricate things along. Regarding Facta, she said:
It might be a bit embarrassing for her to admit

I'm not entirely sure; I was thinking more about the pain during bowel movements being the reason she developed hemorrhoids. We'll find out everything on February 25th. Thanks for the input. 🙂

Rachel Martinez15 said:I don't know, I was thinking maybe the pain during bowel movements is what caused the hemorrhoids. We'll find out everything on February 25th. Thanks for the replies. 🙂

Hemić can absolutely cause pain when you're going to the bathroom. Since they contain both an anesthetic and an analgesic, they should be a huge help in this situation.

Check out this interesting portal launched by the medical school in Miami, where doctors and researchers weigh in on alternative treatment methods and the actual effectiveness of complementary medicines:

After my father passed away recently (glioblastoma, diagnosed and gone within a month and a half), my mother was diagnosed with ovarian cancer at the eleven-month mark. It’s suspected to be an adenocarcinoma, likely the serous type, because her CA 125 marker hit about 4000. During the pelvic exam, doctors found massive ascites—she had about 4.5 liters of fluid in her abdomen, which they tapped and biopsied. At that point, she was scheduled for surgery on January 8th, 2015, at Peter Memorial Hospital. Within two weeks, things took a turn, and she ended up at Vinogradski Hospital in Washington, D.C., due to breathing issues. It turns out she was also accumulating fluid around her lungs; she was held there for two weeks to drain about 3.5 liters. Interestingly, that fluid biopsy didn't show any malignant cells. While she was staying at Vinogradski, a CT scan revealed a 5cm tumor located right where the small and large intestines meet.
At that stage, the doctors at Vinogradski said they would handle the surgery themselves rather than sending her back to Peter. The only debate was whether the protocol should be chemo-surgery-chemo or just surgery followed by chemo. But after all that back-and-forth and endless delays, the final word from them was that it wasn't their department since it was a gynecological issue, not a general one, and they told us to head back to Peter.
Once we got to Peter Memorial, they requested a follow-up colonoscopy. We had to pay for it privately. The doctor could only get about 35cm in before taking a biopsy sample, which eventually came back positive for malignant cells.
Based strictly on those colonoscopy results, they decided it wasn't their responsibility either because the issue was in the abdomen, not the ovaries, and tried to pass the buck back to Vinogradski.
We absolutely lost it. I won't go into all the details, but we fought, and she was kept at Peter with a new surgical agreement. Looking at the timeline, we have spent two months just watching these hospitals play "pass the patient" back and forth.
She finally had the surgery yesterday, assisted by surgeons from Mayo Clinic. I found out today that the "surgery" was essentially just opening her up and then closing her back up. They claimed the entire abdomen is involved, and any actual intervention would carry too high a risk of her not surviving the procedure.
Now, the only thing left is chemotherapy in a few weeks, and then we just see how far that takes us.
The surgeon from Mayo Clinic was completely stunned that everyone waited this long to start treatment. He couldn't help but wonder what might have happened if they had actually acted two months ago.
I am just as baffled. How did nobody step up despite all the test results? Is there anything I can even do at this stage?
I know you can't give specific medical advice here, but I'm hoping we can talk more openly in this forum. What can I realistically do now? What should we expect? Roughly how much time do we have left—are we talking months, or is it more than six months?
We've been advised to start looking for professional assisted living facilities that can provide specialized care, so we are starting that search immediately.
I won't ask about alternative treatments here; I feel like that would be counterproductive. If anyone has suggestions, please send me a private message.
Anyway, thank you to everyone for reading this and for providing a space where I can actually lay out the whole situation.
I'm intentionally leaving the doctors' names out of this to protect their reputations and to ensure no one judges their decisions prematurely.

My God... they really botched this one. It all comes down to pure pragmatism... Peter Memorial Hospital falls under the Rebro system, while Vinogradski is its own separate Mayo Clinic entity... everyone is just trying to protect their own budget, so if you get admitted to Rebro, they’ll kick you over to Vinogradski, and vice versa... That's just how the American healthcare system works...
...so what now? Nothing, unfortunately. Fighting it would be like tilting at windmills or arguing over whether the chicken or the egg came first. Save your energy and your nerves; you're going to need them.
How much time does she have left? Honestly, considering the fluid buildup in her pleura and abdomen—I don't believe there's much time remaining. But why stress about that right now? Mom is doing poorly and is in the terminal phase. She's moving toward palliative care. No matter how much time she has left with you, do everything in your power to ensure she spends it with dignity and peace, surrounded by her loved ones in the comfort of home, if possible.
Hang in there 😢

Douglas Ward9 said:After my father recently passed away (glioblastoma, just a month and a half after diagnosis), my mother was diagnosed with ovarian cancer (in November)—adenocarcinoma, likely the serous type—because her CA 125 marker was sitting at about 4000. During her pelvic exam, they found a massive amount of fluid in her abdomen, so they performed a puncture (4.5L) and took a biopsy of the fluid. At that point, she was scheduled for surgery on January 8th, 2015, at Peter Memorial Hospital. Within two weeks, though, my mom ended up at Vinogradski Hospital (Washington, D.C.) because she was having trouble breathing; they found fluid buildup around her lungs and kept her there for two weeks to drain it (about 3.5L). The biopsy from that fluid didn't show any malignant cells. While she was staying there, she had a CT scan which revealed a 5cm tumor mass located right where the small and large intestines meet.
Back then, the doctors at Vinogradski said they would handle the surgery themselves instead of at Peter, and the only debate was whether we’d go chemo-surgery-chemo or just surgery-chemo. After all the chaos and delays, the final word was that this wasn't their issue—it was strictly gynecological—so they told us to head back to Peter.
At Peter Memorial, they requested an additional colonoscopy, which we ended up paying for privately. The doctor could only get about 35cm in before taking a biopsy sample (which later came back positive for malignant cells).
Based on those colonoscopy results, they decided it wasn't their problem either since it involved the abdomen and not just the ovaries, and they tried to pass the buck back to Vinogradski.
At that point, we absolutely lost it. Not to go into all the messy details, but she was held at Peter, and we finally reached a new agreement for the surgery. Looking at the timeline, we've spent the last two months just watching these different hospitals pass the responsibility back and forth.
Yesterday, the surgery finally happened, assisted by surgeons from Mayo Clinic, and I just found out today that they basically just opened her up and closed her back up. Apparently, the entire abdomen is involved, and any real intervention would have been far too risky for her to survive the operation.
All that's left now is chemotherapy in a few weeks, and then we just see how far that takes us.
The doctor from Mayo was incredibly baffled as to why everyone waited this long to start treatment; he keeps asking what would have happened if someone had actually stepped up two months ago.
I’m just as confused—how did nobody want to act, regardless of all the test results? Is there anything I can even do at this stage?
Look, I know you guys can't give me specifics, but I figured this forum is a place where we can talk more freely. What can I actually do now? What should I expect? Roughly how much time are we looking at—are we talking within six months, or longer?
We've already been advised to start looking for assisted living facilities that can provide professional care, so we'll definitely be starting that search.
I won't ask about alternative treatments here, as I think that might backfire; maybe some recommendations via private message, though.
Anyway, thanks to everyone for reading this, and for providing a space where I can actually lay out the whole situation.
I'm obviously not naming the doctors here—I want to protect their reputations as much as possible and not influence anyone's opinion of their decisions.

It’s just horrific how everything played out. 😢
Unfortunately, the situation is incredibly grim, given the ascites and how widespread it is. As for how much time she has left... honestly, no one can tell you for sure.
It could be a day or two, or it could stretch into months—it all really comes down to how her body responds to the treatment, regardless of what the statistics say.

The big question is what they finally determine: is the primary tumor in the colon or the ovaries? That’s going to dictate the whole therapy plan. A colon tumor might actually respond to treatment and buy you some more precious time, whereas ovarian tumors can be incredibly sneaky, and honestly, chemo often doesn't even touch them.

My honest advice? Give the chemotherapy a shot. At least let her go through one cycle. If it turns out to be too much for her to handle, you can always stop the treatment then. But on the flip side, you might just gain more time together.
I'm really hoping she can tolerate the chemo—that her labs aren't looking too grim (I'm talking about things like liver enzymes, bilirubin, creatinine, and hemoglobin). If her blood work looks okay for chemo and her general condition is stable, she should be able to handle it. Just try it; you don't have anything to lose.
And please, ask her what she wants. Sadly, at this stage, we're no longer looking at a cure.

Get prepared for the chemo ride. Stock up on good anti-nausea meds—personally, I recommend Ondansetron; it helped my dad immensely, he didn't vomit at all, and you can get a pack of $43 10 tablets. Get her ready and just be prepared for anything.

Angela Wright put it well, because unfortunately, the situation is tough.
The ball is in your court now, and it's also up to your mom to decide if she wants to attempt the chemotherapy or not.

Hang in there—I know exactly how hard this is for you.

My father-in-law had his tumor markers drawn the day before yesterday. I called the secretary over at Jordanovac today to get some clarity, but she wouldn't give me the actual number. She just vaguely mentioned that it was "quite high"—the doctor happened to be in the room at that exact moment, so she brushed it off by saying he would assess the situation further. I mean, look, I’m not a doctor, and I’m certainly not qualified to make a diagnosis, but why is it such a massive ordeal to simply share the digit? A normal reading should be under 3. Is we talking 300, 3,000, or 30,000? 😠

I can't help but feel this creeping dread about what the PET scan is going to reveal. I'm terrified that once we have those results, we'll just be bracing ourselves all over again for whatever nightmare comes next...

Fiza, they aren't supposed to be giving out test results over the phone... I'm honestly surprised she told you the same thing... but look, regardless of how high that number is, you both already know deep down it isn't good news. 😢 The marker levels alone won't change the reality of the situation. It’s just going to show exactly how much things have spread, which allows them to build a solid game plan to figure out the best way to treat him and keep everything under control for a while. Hang in there, dear. 😢

Rachel Wood27 said:The way this has all unfolded is just terrible. 😢
Unfortunately, the situation is extremely grave given the ascites and how extensive everything is. No one can tell you exactly how much time she has left.
It could be a day or two, or it could be a few months or even longer; it all depends on how she responds to treatment (regardless of what the statistics say).

What was ultimately determined—whether the primary tumor is from the colon or the ovaries—is critical because it dictates the therapy. A colon tumor might respond to treatment and buy you more time, whereas ovarian cancer can be incredibly sneaky, and often chemotherapy doesn't even work.

My advice is to definitely try chemotherapy. At least complete one cycle; if it becomes too difficult for her to endure, you can always stop. On the other hand, it might give you more precious time together.
I hope she can tolerate the chemo and that her labs aren't too bad (I mean liver enzymes, bilirubin, creatinine, and hemoglobin). If her blood work is stable enough for chemo and her overall condition holds up, she should be able to handle it. Give it a shot; you have nothing to lose.
Ask her what she wants, too. Sadly, at this stage, a cure is no longer an option.

Prepare thoroughly for the chemo. Get some good anti-nausea medication (I personally recommend Ondansetron, which helped my father immensely—he didn't vomit at all, and you can get a pack of $43 10 tablets), prepare her, and be ready for anything.

Angela Wright wrote it well; the situation is, unfortunately, very heavy.
The decision rests with you and your mother—whether you want to attempt chemotherapy or not.

Hang in there. I know how hard this is for you!

Yes, the lack of communication between different hospitals is honestly shocking. What hurts most is hearing from several sources a sentiment like: "The hospital that admitted her should be the one treating her." That kind of attitude toward a patient is simply unacceptable.

The latest update from the doctor today was that when they performed the scan yesterday, the ovaries appeared small (I assume he meant they were a normal size).
He didn't specify the exact origin or starting point of the disease, but I suspect it's coming from the bowel.

Yes, we will absolutely make a decision regarding chemotherapy after a detailed discussion with the doctor and reviewing the blood work. I trust the doctor will provide realistic advice at that moment.
If her blood counts allow for it, then of course I would at least want to try chemotherapy, but ultimately, the decision belongs to my mother.

My only priority is that she spends her final time in this world as peacefully and comfortably as possible, with as little pain and fewer complications.

Hi everyone....
My mom is currently at Peter Memorial Hospital in oncology. Back in July, they removed a large sarcoma from her uterus—along with everything else... she completed six rounds of chemo and got the news that everything looked okay just before Christmas.
Now, her kidneys have started failing; her urea levels are up... they've inserted tubes into her kidneys to drain the urine, and we’re waiting on CT results tomorrow to see what the plan is for her...
What worries me most is how to organize things once she's discharged from the hospital. I know there isn't much left to be done, but I just want to know how to make her comfortable.

Amanda Wells75 said:I haven't checked in for a while because there wasn't much news regarding my mom's condition. After her fifth round of chemo, her CA-125 marker shot up from 184 to 1118. Because of that, the doctor said there was no point in even attempting a sixth round of chemo. She had a CT scan, and the results show the 33mm secondary growth hasn't changed, but there are quite a few new spots on the liver. The pelvic area and other organs seem okay.
Mom has been prescribed Endoxan 50 mg (one pill twice a day) and Megostat 40 mg/ml.
The doctor mentioned she should take these for two months before coming back for a check-up. She needs to get her markers tested right before the appointment, since these meds won't actually show any effect until after those two months pass. I'm wondering—can you really expect those markers to drop from these pills?

Best,
Maya

..Yeah, my sister is in a similar boat. They couldn't give her chemo because of her liver, so they switched her to some hormone therapy (Zoladex and breastan), which feels like a total sugar pill to me. It feels more like a placebo than actual medicine, but hey, what do I know? I guess they know what they're doing.

It’s been a month on this hormone therapy (if that's what you call it), and honestly, her overall condition has gone downhill. First, there's the unbearable back pain that keeps her stuck in bed most of the day. We got her spine scanned, and it turns out there aren't metastases there; it's just "classic" spinal issues like curvature and calcification. We're dealing with it using patches, which help sometimes and fail others. Usually, we have to throw in some painkillers or sleep aids too.

So, at least regarding her spine, things are slightly better—though we're worried the pain might be referred from somewhere else entirely. Now, abdominal pains are starting up. We'll get the new liver marker results tomorrow, and I'm pretty nervous that they won't look good.

Hey everyone, I just wanted to let you all know that my grandfather unfortunately passed away last week... Despite battling cancer and having four broken ribs, it ended up being fluid in his lungs that got him... Thanks so much to everyone for all the support...