Posts by shadowmason6

Does anyone here actually have some real-world experience with this, or maybe someone who can break down the difference between just getting a standard CT scan versus going through with a PET/CT??? I’m honestly sitting here wondering if there’s even any point in pushing for a PET/CT before surgery if the CT scan is already done and out of the way... like, is the detail from a PET/CT really that much more intense? Or should I just hold off and save that for the follow-up checks after the operation is over...?

rustyscout31 said:If you made it out to Washington, D.C. to see Dr. Majerović, then honestly, you made the right call... I mean, I haven't quite wrapped my head around the actual diagnosis yet—maybe you guys haven't even been told officially—but if we're looking at adenocarcinoma, things can still go okay... They'll probably start chemo soon enough, I assume... Just hang in there...👍

Dr. Majerović actually suggested Fiza too...🙂So, I’m gearing up to finally track him down this week... but man, things are just a mess right now. My mom is still stuck at the Mayo Clinic because they couldn't even get her colonoscopy done on Friday. Apparently, her system wasn't cleared out enough for them to proceed, which is just great... She can't really hold down the enemas they gave her, so this weekend she’s trying this liquid prep instead that seems to be working a bit better. Actually, maybe that's way too much information...😁 I really hope everything works out for her tomorrow, because honestly, this whole thing where they just starve her of any info and keep her hanging like this... it’s seriously starting to mess with her head...
So, I was scrolling back through some of the older threads and saw everyone going back and forth about whether you actually get anesthesia during a colonoscopy... and honestly, it's driving me nuts because I know for a fact that over in the States, they pretty much knock you out for the whole thing! I know, I know, America is a world away, but I’m only bringing it up to make a point—they treat patients over there like lab rats in a science experiment, just popping them under with sedation immediately... but here? Nobody at the hospital even bothered to mention it as an option. Not a single word...
When it comes to the actual diagnosis, everything I’ve been told so far has just been verbal... you know, just people talking at me without anything official on paper... but then today I finally took a look at my medical charts and saw what it actually says written down... So, I was looking into some stuff regarding NPLI... specifically about colon descriptions and all that mess, and honestly, it’s just one of those things that makes you want to pull your hair out... turns out there's way more to it than people realize... I guess I can't say anything for sure just yet since we're still waiting on the biopsy results from the colposcopy... but man, seeing "NPLI" written there... I'm assuming that stands for neoplasia? It honestly sounds way more ominous than adenosis... :(

Amanda Miller69 said:It’s been exactly a week since Mom passed away, and honestly, the only thing keeping me sane is knowing she isn't hurting anymore and that she's finally back with my dad... I just feel like a puppy that someone kicked out of the car and left on the curb, totally abandoned and miserable, even though my boyfriend and my aunt are showering me with so much love right now. When you lose a parent, you basically just become an orphan. I know this feeling will fade eventually, but right now... it's just heavy.

I can only imagine what you're going through... I barely even knew my own dad. He died when I was only four, so my mom was basically my entire world, my whole foundation. Just the thought of facing the reality that I could lose her too—it's brutal.
I really believe it takes time, and having good people around you will help you get through those rough patches. Lean on them for now and just keep being strong!
🙂

Amanda Miller69 said:Give it a shot in Chicago, maybe over at Rib, seeing Dr. Majerović. He runs his clinic on Wednesdays from 12 to 3 PM. He actually performed my mother's surgery—he's an expert abdominal surgeon. Sadly, my mom's procedure was just too much, and after fighting this for two years through all the chemo, she was just too weak to pull through... she passed away on Saturday. I truly believe he might be able to save your mom, though, because he told me back when we first started this battle nearly two years ago that if we'd caught it earlier, we could have saved her. Sending you guys so much luck.🙂

First off, Fiza—I am so, so incredibly sorry for your loss. My heart really goes out to you... losing that fight is devastating, but honestly, looking at how things are playing out with this whole Bingo thing, maybe there’s some kind of sign there somewhere...
Thank you so much for reaching out to help others even while you're going through such a brutal time yourself. You’re a real fighter, just like so many people in this group.
I’m actually heading to see Dr. Majerović this Wednesday with all my test results in hand—thanks so much for the tip! I’ll probably end up waiting around all day if I have to, just to make sure he can squeeze me in.
That’s really the only lead I’ve got right now, so in the meantime, I’ve been scouring the internet trying to find anything useful, but it’s so hard to find actual names or honest opinions about doctors when it comes to this specific stuff. I checked the staff pages at Dubrava Medical Center first since they have a decent reputation, but I have no clue who to ask or if a surgeon would even see me without a formal referral... plus, I hear the surgical waiting lists there are absolutely endless...

It honestly took everything in me to decide to start reading this thread (and for good reason, because I feel like I’d just burst into tears every five minutes seeing what so many of you are going through)... Sadly, there are just way too many pages here and I've only managed to scratch the surface. I have so much respect for Angela Wright for starting this whole thing, and seriously, mad props to all of you bravely facing these illnesses and losing people you love dearly!
Yesterday, my Mommy was diagnosed with a colon tumor. If the doctors weren't totally blowing smoke, the CT scans show that the lymph nodes and surrounding organs haven't been hit yet, so they'll schedule surgery once they get the biopsy results from tomorrow's colonoscopy.
With such a shocking diagnosis, I'm trying my hardest to focus on those relatively "good" details. Forgive me if I seem overly optimistic... I think I'd actually lose my mind if I thought any differently, so I'm just trying to keep a level head and figure out how I can actually be useful right now.
Still, there are these nagging doubts creeping in—like, were the doctors sugarcoating things just a little bit? (Maybe it would be easier to handle the bad news later if I let them?) Is a CT scan even that reliable, and could they truly see everything...?
I’m really hoping you guys might have some advice because I’m lost on what I can even do right now to make sure Mommy gets the best care possible??? A friend of mine (she's an internist at a hospital over in Canada) thinks the absolute most important thing is finding a top-tier surgeon! Right now, Mom is at a local hospital in a smaller town. Look, I have absolutely zero complaints about her current doctors, I mean it, but I can't help feeling like this particular hospital doesn't exactly have the best reputation... maybe it would be better to have the surgery done at a major medical center in Chicago instead!???
Can anyone recommend a great surgeon—or maybe just tell me if I should at least ask for a second opinion???