Resources and support for families dealing with cancer and serious illness

Michelle Flores53 said:Could someone please reach out to me regarding leiomyosarcoma? I’ve been battling this tumor and have tried several different treatment paths, but nothing seems to be working so far. If anyone knows anything at all, please help me. Thank you so much.

read more about leiomyosarcoma here

shadowmason6 said:I can only imagine what you're going through. I barely even knew my own father; he passed away when I was only four, so my mother ended up being my entire world. Just the thought of potentially losing that one remaining pillar of support—it’s heavy.
I truly believe it takes time, and hopefully, the people who care about you will help you navigate this stretch. Lean on them right now and keep staying strong.
🙂

My nephew had his First Communion today, and it hit me harder than usual—that profound sense of missing my own parents. I know things are difficult for you; for me, my mom was everything during those three years following my dad's passing. It seems like these absences always feel most acute during the holidays (Christmas, Easter). This past Easter was particularly brutal for me because Mom was already doing quite poorly leading up to her surgery. It was easily the hardest Easter of my life.
We just have to find the strength to keep moving forward.
Sending a big hug.🙂

shadowmason6 said:It was such a difficult decision for me to start reading through this thread (and for good reason, because I felt like I might burst into tears seeing everything so many of you are going through)... Unfortunately, there are just so many pages that I've only managed to get through a small portion. Honestly, I have so much admiration for Ivan, who started this discussion, and for all of you bravely facing illnesses and the loss of loved ones!
My mom was diagnosed yesterday with colon cancer. If the CT scans are accurate, they show that the lymph nodes and surrounding organs haven't been affected, and surgery will be scheduled once they get the biopsy results from her colonoscopy tomorrow.
In the face of such a shocking diagnosis, I'm trying my best to focus on those relatively positive details. Please forgive me if I seem overly optimistic; I think I would lose my mind if I thought any differently, so I'm trying to keep a level head and see what I can actually do to help during this stage.
Still, there are these nagging doubts—did the doctors perhaps sugarcoat things a little? Would it be easier for me to process things later if I were given the harsher news now? How reliable is a CT scan, and could they truly have seen everything...?
I was hoping you all might offer some advice, as I'm not quite sure what steps I can take right now to ensure Mom gets the very best care. A friend of mine, who is an internist at a hospital over in Canada, believes the most critical thing is finding a top-tier surgeon. Mom is currently at a hospital in a smaller town, and while I have absolutely nothing but respect for her current medical team, I can't help but feel that a local facility might not have the same reputation as a major center in Washington, D.C., where it might be better to have the surgery performed.???
Could you recommend a great surgeon—or perhaps suggest if I should at least seek a second opinion???

If you decide to go to Washington, D.C. to see Dr. Majerović, you'll be making a wonderful choice. Also, surgeon Uravić has a stellar reputation, and he operates out of the Mayo Clinic.
Regarding the idea of doctors being untruthful, in my experience, they really don't do that anymore. Not only do they tell the truth, but they explain everything so clearly that you can actually understand it without getting lost in medical jargon. In fact, sometimes I find their conversations with patients and families to be almost too blunt, especially when they start discussing prognoses and life expectancy.
Based on everything I've read in your post, it sounds like the situation is quite manageable since there are no metastases, and the surgery shouldn't be overly complicated. They’ll simply remove the malignant section of the colon and reconnect the healthy ends. I didn't catch the specific type of diagnosis (maybe you don't even know yet), but if it's adenocarcinoma, things look promising. She'll likely go on chemotherapy afterward. Hang in there.👍

Please accept my deepest, most sincere condolences. 🙂

Melissa Kim45, how’s it going? How’s your mom doing?

It’s been way too long since I’ve seen any of those witty posts of yours...

😢Lindsay, I am sending so much love to you and your whole family right now. My heart really goes out to all of you.

Hey everyone! Does anyone happen to have a recipe for a homemade remedy to boost and maintain platelet counts? I'm looking for something where the base is a thick grease or lard...

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... :(

Please accept my deepest, most sincere condolences on the passing of your father.

shadowmason6 said:Dr. Majerović was recommended by both Fiza (🙂) and myself, so I'm planning to get an appointment this week. My mom is still stuck at the Mayo Clinic because they couldn't perform her colonoscopy on Friday; apparently, her system wasn't cleared out enough. She has trouble holding onto enemas, so she’s spending the weekend drinking some sort of syrup that seems to be working better. Honestly, maybe that’s TMI...😁 I just hope they can pull it off tomorrow, because this whole fasting and waiting game is really starting to take a toll on her mental state.
On another note, I noticed some discussions on previous pages regarding anesthesia during colonoscopies. I know for a fact that patients in the States—and yes, I realize that’s a long way off, but I mention it only to point out that it’s a standard practice and that we aren't being treated like lab rats here—are routinely sedated for the procedure! No one at the hospital has even brought it up as an option.
Regarding the diagnosis, everything I know has been verbal so far. However, looking at her chart today, I saw Npl. colon desc. i. o. I assume nothing is definitive yet since we're still waiting on the biopsy results from the scope... I'm guessing "Npl." stands for neoplasm? That sounds significantly worse than adenoma, doesn't it? :-(

There’s an article at this link about Dr. Majerović saving a woman with an invasive tumor.
http://e-chicago.info/portal/vijesti/...kilograma.html
Wishing you all the best.🙂

Lindsay, hang in there!
My heart goes out to you.

Hey everyone,
I check this sub regularly, though I usually stick to posting on the association's main forum.
Quick question for the group... how do you all deal with the psychological toll on patients?
My sister was diagnosed with ovarian cancer, and she’s also dealing with deep vein thrombosis and ascites, so she hasn't been able to move much for about ten months now. Sometimes she acts like a total spoiled brat—she's 39, for crying out loud—and gets furious if things aren't done her way. She loves being in control and manipulating people... and honestly, I just don't know how to handle her. I don't want to constantly cave to her demands, but sometimes she drives me absolutely insane. Should I be straight with someone like that, or do I need to walk on eggshells and just take their outbursts?
She saw a psychiatrist a few times and was actually happy with the care, but she hasn't been back in quite a while...

Linda Wright5 said:Hey everyone,
I check this sub regularly, though I mostly post over on our association's main board.
I have a question... how do you guys handle the psychological toll on patients?
My sister was diagnosed with ovarian cancer, and she’s dealing with deep vein thrombosis and ascites, so she’s been pretty immobile for about ten months now. Sometimes she acts like a spoiled toddler (even though she's 39), throwing fits if things aren't her way, trying to control everything and manipulate people... And honestly, I don't know how to deal with her. I don't want to just cave to every whim, but sometimes she drives me absolutely insane. Should I be straight with someone like that, or should I walk on eggshells and just swallow their outbursts?
She saw a psychiatrist a few times and liked her, but it's been a while since her last appointment...

I'm not sure what the magic answer is, but my approach is basically acting as normally as possible given the circumstances—sometimes I just stay quiet, and other times I lose it! You just have to lead with a lot of love, because your sister is terrified, and all this behavior is just coming from that fear. It’s tough. It's okay to tell someone when they're actually bothering you or hurting your feelings; personally, I think honesty is the way to go. No matter how much she lashes out when you speak up, just remember it isn't actually about you—it's just the fear talking. I don't know if that helps much, but hang in there!

Brenda Walker58 said:I’m honestly not sure what to tell you. My approach is just to act as normal as possible given the circumstances—sometimes I stay quiet, and sometimes I just blow up! You just have to lead with love, because your sister is terrified, and that fear is driving everything she does. It’s tough. It is totally okay to tell someone when they’re bothering you or if they’ve hurt your feelings; I think being honest is vital. No matter how much your sister gets upset when you say it (if you choose to tell her), just remember it isn't about you—it's purely about her fear. I don't know if this helps, but good luck!

Thanks so much, that really helped! Yeah, fear is definitely at the root of everything she does. She tries to control everything because she can't control the illness itself, so she compensates by trying to micromanage the rest of her life. I'm going to suggest she see a psychiatrist today, because there's just no way I have enough expertise to help her through this...

Cancer isn't all-powerful, you know?
It just can't:
corrupt love,
crush hope,
break faith,
steal peace,
shake trust,
drain friendship,
wash away memories,
overpower the soul,
take away eternal life,
or break the spirit...

Anyway, hey everyone, hang in there!

Linda Wright5 said:Greetings to all the fighters out there,
I follow this sub-forum quite regularly, though I find myself contributing more frequently to our association's main forum.
I have a question regarding a specific matter... how do you all manage the psychological struggles of those who are ill?
My sister was diagnosed with ovarian cancer, and she's also dealing with deep vein thrombosis and ascites, which has left her extremely limited in her mobility for about ten months now. At times, she acts like a spoiled child—despite being thirty-nine years old—becoming furious if things don't go her way, and she possesses a certain penchant for controlling and manipulating those around her... And I must admit, I am often at a loss as to how to handle her... I don't want to indulge her too much, yet there are moments when she truly drives me to my wit's end... Should one be blunt with people in these situations, or is it better to walk on eggshells and simply endure their outbursts?
She saw a psychiatrist a few times and seemed satisfied with the care, but she hasn't been back to see her in quite some time...

I have to admit that my own family finds my mother's erratic behavior incredibly difficult to navigate, even though things have smoothed out significantly since her cancer cells were no longer so aggressive. We try our best to avoid any situations that might trigger an argument. However, when things reach a breaking point, we tend to speak our minds, even if it means raising our voices to her. It is quite difficult to offer any definitive advice on how one ought to behave in such circumstances...

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...?

shadowmason6 said:Has anyone here actually dealt with this? I’m trying to weigh the value of a PET/CT against a standard CT scan. Does it even make sense to push for a PET/CT before surgery if the CT is already done? Is the detail significantly better, or should I just hold off and save that for the post-op follow-ups?

You can find more info on how PET/CT works right here

To put it in layman's terms—and I'm certainly no doctor here—the main difference is that a PET/CT is designed to distinguish malignant cells from healthy tissue. A standard CT scan really can't tell the two apart. For instance, if there's some old scar tissue sitting in the body, a CT might misread it, whereas a PET scan can spot the difference because it actually tracks cellular activity.

shadowmason6 said:Regarding the diagnosis, everything I know so far has just been relayed to me verbally. Today, I finally saw it written on my chart: NPL colon desc. i.o. I assume I can't be entirely certain yet since we're still waiting on the biopsy results from the colposcopy... I'm guessing NPL stands for neoplasia?... hmm, that sounds even worse than adenoma :-( ???

Bokic 🙂 basically, "neoplasia" is just a broad term used for any kind of abnormal cell growth in the body. An adenocarcinoma is a very specific type of cancer—in this instance, it involves cells responsible for secretion or discharge. Honestly, in the intestines, adenocarcinoma is the most common finding because, as they told me, there isn't much else it could be... The "colon descendens" refers to the descending part of your large intestine.
As for "i.o."—I'd guess it means *in observatio*, or a conclusion drawn based on current processing, though I'm really just speculating here

hiddentiger80 :-)) big hello to you!!!!
How have you been? It feels like it’s been forever since I last heard from you—unless I just missed something on my feed :-)) Hope everything is going well!