Support resources for families dealing with cancer and other serious illnesses

Hello,

I would be truly grateful if anyone could offer some suggestions or any form of assistance.

My wife was diagnosed with a mesenchymal tumor in her pelvic bone, and she has already undergone three surgeries. The first one took place in St. Louis—they opened her up, closed her back up, and told us everything was fine.
Of course, things were not fine; a year later, she had to undergo emergency surgery on a rib performed by Prof. Castellan. A subsequent MRI showed everything was okay. However, after two follow-up scans, we saw it had returned, measuring about 3 cm. Oncologist Herceg prescribed Nolvadex for the rib area, which worked for a while—the tumor actually stabilized.
Unfortunately, the Nolvadex stopped working, the tumor grew to 7 cm, and she had to go back into surgery.
Prof. Castellan operated on her again, but there is a remaining section that isn't operable, so she needs therapy.
The current plan is radiation; May 2nd will mark three months since the surgery. The remaining part is 3 cm, and up until this very moment, my wife hasn't received any treatment—she’s only going in for radiation mapping next week.
For context, my wife was born in 1980. Honestly, Oncologist Herceg was quite dismissive of her—he just didn't put in the effort.
I can't say that about Prof. Castellan, though; he is a wonderful man.
Since we are at a loss regarding who else specializes in mesenchymal tumors...
If anyone has had similar experiences or could recommend another oncologist, I would deeply appreciate it.

Best regards,

I’m looking for some advice. It involves a patient I’ve mentioned before—lung cancer, stage 4, inoperable. They just finished the third round of six scheduled chemo sessions (paclitaxel and carboplatin). Now they're heading in for an ultrasound because there's a significant amount of fluid buildup in the lungs. After the ultrasound, they plan to drain the fluid via puncture. Apparently, there isn't much of it, and the doctors are suggesting the buildup might be a reaction to the tumor receding. They also mentioned yesterday that a medication might be administered directly to the lungs.
I guess it's hard to know who to trust when the doctors are so tight-lipped. We're dealing with the Mayo Clinic, where getting any real time with the physicians is nearly impossible. Some of you might have dealt with something similar, unfortunately.
Any help or insight would be appreciated.

stormygardener34 said:I’m looking for some advice here... I’ve mentioned this before, but we’re dealing with a patient with stage 4 inoperable lung cancer. They’ve finished three out of the six planned chemo rounds (paclitaxel and carboplatin), but now they’re heading in for an ultrasound because it looks like a massive amount of fluid is building up in the lungs. After the scan, they plan to puncture that area to drain the fluid—which apparently isn't much—and the doctors are suggesting the fluid buildup is actually a sign the cancer is retreating. Just yesterday, there was talk about administering medication directly into the lungs.
Who can you actually trust? These doctors are incredibly tight-lipped... we're at a major hospital like Mayo Clinic, where getting any real time with the specialists is nearly impossible. I suspect some of you have dealt with this nightmare before.
Please, I need help and guidance.

Go find a senior nurse on the oncology ward, specifically Sandra Karabatić. She also heads up the Sail Association for lung cancer patients. She is an absolute saint and will go out of her way to sit down and explain everything you need to know.

I start typing a post, delete it, start again, then delete it all over...
My mom was just diagnosed with bile duct cancer. Between the flood of info, the medical jargon, and all the "what if" scenarios, my whole family is losing our minds.
The plan is surgery next week to get the tumor out, but she called me today totally worked up. Apparently, during her latest consult, the surgeon was being "sensitive" about the surgical plan—he was acting as gentle as a newborn calf on ice. I’ve spent the entire day wrestling with how to get her out of the hospital (away from here) and move her back to the city, but it feels impossible. She doesn't want to go, and with her symptoms—the jaundice and the itching—we can't exactly bring her home and figure out the next steps there.
I don't know. We’re trying so hard to stay positive and keep her spirits up, but then one sentence from a doctor sends her straight into a depression. We all know this is a massive surgery. We know there are risks, and we know even if it works, we have a long road ahead. But shouldn't the patient be calm heading into something this intense instead of being discouraged by the way things are handled? 🤷

This emotional rollercoaster is brutal. There are moments where I feel like this isn't actually happening to us... and then suddenly, I'm just paralyzed with fear.

I’ve been scrolling through this entire thread—there is so much courage in here. I just hope we find enough strength and everything else we need to get through this.🙂

Susan Gonzalez22 said:I start writing a post, then I delete it, then I start again then I delete it again...
My mom was just diagnosed with bile duct cancer. Honestly, between all the medical jargon, the endless info, and all the "what if" scenarios, my whole family and I are losing our minds. Just... completely losing it.
She’s scheduled for surgery next week to try and get the tumor out, but she called me today totally hysterical. Apparently, during her latest talk about the surgical plan, the surgeon was being "human and sensitive"—which is basically code for being as graceful as a cow doing ballet. And now I'm stuck all day fighting this internal battle about how to get her out of the hospital (outside of Chicago) and move her back to the city, but it feels impossible. She doesn't want to go, and with her symptoms—the jaundice and the itching—we can't exactly just bring her home and figure it out later. We need better options.
I don't know. We are trying *so* hard to stay positive and beam that energy over to her, but then one single sentence from a doctor just sends her straight into a depression. Look, we all know this surgery is massive. We know there are complications, we know nothing is guaranteed, and we know even if it goes perfectly, there's still a long road ahead... but shouldn't the patient be calm heading into something this heavy? Instead of getting discouraged by doctors who don't know how to phrase things? 🤷

God, this emotional rollercoaster is brutal. There are moments where I feel like I'm watching someone else's life... and then suddenly, I'm just paralyzed by fear.

I've been scrolling through this entire thread—there is so much courage here. I just really hope we find the strength and everything else we need to get through this.🙂

😢
I did the exact same thing five years ago... though I think I ended up deleting everything without actually posting... I can't quite remember anymore.
I didn't even know what to ask or say, since it felt like everything had already been said.😢
Back then, my dad was diagnosed with the same kind of cancer your mom has, except, unfortunately, there were zero options for him. No surgeries, no therapies, nothing.
I know how hard this is for you and everyone in your family, but please, hold onto hope just because they suggested surgery. The fact that there's even a chance at a cure is something.
If there's any way to get her transported back to Chicago, try to talk her into it—even if it's just to get a second opinion. We went to some places near the Mayo Clinic and local hospitals, and later I heard about a great doctor over at Mercy, I think his name was Kocman, but I'm not 100% sure.
I'm praying everything goes okay for your mom. It's going to be an uphill battle, but
just pull together all your courage and strength for this.

I read this thread often, and it always warms my heart to see people's bravery, their will to heal... the positivity, even when they're going through hell...
I'm feeling really low right now......and I miss my dad... so much.

Look, if there's any silver lining here, it’s that surgery is actually on the table to get that tumor out. She’s staying brave and keeping a positive attitude, though she might be a little in denial at times—I just hope that’s not just a front for everyone else. We need to push her to talk about what she’s feeling, whether it's with us or a counselor at the hospital if they have one available. She brought it up yesterday, so we need to see today if that procedure is a go. There's no other way: you just have to dig deep, find every ounce of strength you've got, and take it one day at a time. Right now, the main goal is making sure that surgery scheduled for next week goes perfectly and they get that tumor removed. 🙂

Susan Gonzalez22 said:Yeah, if there’s any silver lining here, it’s that surgery is actually an option to get that tumor out. She’s being brave and staying positive, though she might be a little naive about the reality of it all—and I really hope that optimism isn't just a mask she's wearing for the world. We need to push her to talk about it; if she won't open up to us, she at least needs to find someone inside the hospital to lean on. She brought it up yesterday, so we need to see today if they can actually make the procedure happen. There’s no other way forward than to dig deep, find every ounce of strength, and just grind through this day by day. Right now, our sole focus has to be getting that surgery scheduled for next week and praying it goes perfectly so that tumor is gone. 🙂

Look, you have to face the music right away: those people are there to process you. They basically just Google "humanitarian gestures" to look good. The bottom line is that Mom needs this surgery ASAP. That’s the surgeon's job; everything else falls under the oncologist. You have to accept how these people communicate—or don't—and stop expecting more. Just lock in, focus entirely on your own situation, and figure out how to solve the problem at hand. There's no other way to handle it; I'm telling you from experience, and I'm sure anyone else who's been through this will back me up.

Paul Edwards5 said:Hello,

If anyone has any suggestions or can help out in any way, I would truly appreciate it.

My wife was diagnosed with a mesenchymal tumor in her pelvic bone—she's already undergone three surgeries. The first one was in St. Louis, where they opened her up, closed her back up, and told us everything was fine.
Of course, things weren't fine—a year later, she had an emergency surgery on a rib performed by Prof. Castellan, and the subsequent MRI showed all was well. However, after two follow-up MRIs, we saw it had returned, about 3 cm. Oncologist Herceg prescribed Nolvadex for the rib area, which worked for a while—the tumor actually stagnated.
But then the Nolvadex stopped working, the tumor grew to 7 cm, and she had to go back into surgery.
Prof. Castellan operated again, but there's a portion left that isn't operable and requires therapy.
We are considering radiation—it will be three months since the surgery on May 2nd—and the remaining part is 3 cm. Up until today, my wife hasn't received any actual treatment; she’s just heading in next week for radiation mapping.
For context, my wife was born in 1980. To be honest, Oncologist Herceg was quite dismissive toward her—he didn't really put in the effort.
I can't say the same for Prof. Castellan; he is a wonderful man.
Since we're completely lost regarding specialists for mesenchymal tumors...
If anyone has gone through something similar or can recommend another oncologist, I would be so grateful.

Best regards,

Does anyone have any experience with something like this?🤷

Angela Wright said:Look, you’ve gotta face reality right away: they’re there to screw you over. They basically just Googled "how to act human" to get by. The bottom line is getting Mom surgery ASAP. At the end of the day, you only need the surgeon for the procedure; the oncologist handles everything else. Just accept that communication with people like that is going to be garbage and focus strictly on your own situation and solving the actual problem. There's no other way. I’m telling you this from experience, and I bet others here can back me up.

Yeah, I know. Believe me, I know. You're right. Dealing with my own health issues taught me plenty about how "compassionate" hospitals actually are. Honestly, anger is probably the only thing I have left because I'm just completely sick, and then I don't even know... I guess I'm just wasting my energy.🤷

We're trying so hard to keep her head above water, so it kills me when she hears stuff like this—especially three days before a surgery where she really needs to be calm.

She had a massive mood swing today.😢

Paul Edwards5 said:Has anyone here dealt with anything remotely similar to this?🤷

A mesenchymal tumor is essentially a sarcoma. Unfortunately, we’re dealing with a rare breed here, and they tend to be incredibly aggressive. There are dozens of different types out there, all varying wildly in malignancy depending on where they take root and what stage they've reached. Generally speaking, when you're facing a sarcoma, the reality is pretty blunt: finding an effective chemotherapy is often a massive uphill battle, which means surgical removal remains the gold standard and our best shot at getting ahead of it.
When it comes to Dr. Herceg, he’s easily one of the top experts out there for rare tumors—specifically sarcomas—alongside Dr. Šantek. If you're looking for someone who actually knows their stuff regarding those specific cases in the US, they're the ones. Look, the guy isn't bad; he just carries himself with this certain level of defensiveness and a hint of arrogance that can be off-putting. But don't let that throw you. At the end of the day, he's someone you can actually sit down and have an honest, open conversation with.
Nolvadex did exactly what it was designed to do—it slowed down that tumor growth. It did its job. But unfortunately, when a relapse happens, you're facing the reality of the situation.

Here’s my take on this. You absolutely have to seek out a second opinion abroad at one of those specialized centers of excellence dedicated to sarcomas. Don't just settle for whatever is right in front of you; go where the real experts are. America is far too small to offer any real opportunities for clinical trials regarding these kinds of rare tumors. Because the patient pool is so tiny, the specialized knowledge and research just aren't there. It’s a harsh reality: whatever advanced treatment you might need next, there is a massive chance it won't be covered by Medicare. You'll likely be left footing the bill yourself for incredibly expensive drugs, and even if you have the money, fighting through the red tape to get them approved can be an absolute nightmare. Honestly, my advice? Get out of the country however you can. If I were in your shoes, I’d look into Dr. Paolo Casali at the National Cancer Institute in Milan. Do some digging online—their website and contact info should be easy enough to find.

Angela Wright said:A mesenchymal tumor is actually a sarcoma. Unfortunately, sarcomas are quite rare and are most often highly malignant—there are dozens of different types and varying degrees of malignancy depending on where they grow and what stage they are at. Generally speaking, with sarcomas, there often isn't an adequate chemotherapy available, so surgical removal remains the best possible option.
As for Oncologist Herceg—he and Dr. Šantek are basically the top experts for rare tumors, specifically sarcomas, within the US medical landscape. He’s not a bad doctor, per se; he just has this certain wall up—a bit of perceived arrogance—but if you can get past that, he's quite direct.
The Nolvadex did exactly what it was supposed to do—slow down the growth of the tumor. Sadly, that's usually when a relapse occurs.

My advice would be to absolutely seek a second opinion abroad at one of the major centers of excellence for sarcomas. America is a large country, but even here, specialized clinical trials for these specific types of tumors are hard to come by because they are so rare—the patient pool is tiny, which means the available research is limited too. Unfortunately, whatever might be needed for further treatment likely won't be covered by Medicare, meaning you'd have to fund it yourselves—and we're talking about very expensive medications. Between the bureaucratic red tape and trying to self-fund, it can be a real struggle. So, please—go abroad if you can manage it. My suggestion would be Dr. Paolo Casali at the "National Cancer Institute" in Milan. Just Google them; you'll find their site and contact info easily.

Thank you so much, lovely,

I was thinking something similar regarding going abroad—I actually have a cousin in Switzerland who worked as a medical technician for years, so I thought about reaching out to him.
I'll look into this more in Italy.
Thanks again.

Does anyone have any experience dealing with pituitary tumors, specifically those affecting the optic nerves? My sister has been battling this for two years now, and unfortunately, she’s lost her sight.😢(((

I honestly hate this damn disease. It’s completely wrecked my sister's life; she lost her vision at just 25, and now she’s fighting this battle day in and day out. At this point, I feel like only God can help because, from a medical standpoint, we've hit a wall... I will never forget the day the light just vanished for her—when faces disappeared and everything went dark. Watching her turn into such a withdrawn, helpless, blind person was devastating.😢Our house is filled with nothing but grief, and loneliness has become our constant companion. Every single day, I find myself wondering—and I still do—what it actually feels like to open your eyes in the morning and see absolutely nothing. To have no idea where you are or how to function... It’s incredibly hard on me. I’m constantly crying, asking myself how things could spiral so fast, how she could lose her vision in just a week. There are so many questions and so few answers.😢 Please, is anyone else going through something similar? Does anyone know if optic nerves can actually recover? I’m becoming so desperate and depressed because I’m searching for something impossible: I'm just trying to find a way to make things go back to normal.😢

Elizabeth Hill50 said:I absolutely loathe this damn disease that has completely wrecked her life. Because of it, she lost her sight at just 25 years old, and now she’s fighting this battle every single day... Honestly, only God can help at this point because, from a medical standpoint, there's nothing left to be done. I will never forget that day when the light just vanished from her world—when faces disappeared and everything around her just dissolved into total darkness. She became withdrawn, helpless, blind... 😢our house became a place ruled by grief, where loneliness became our constant companion. Every morning, I find myself asking—and I still do—what does it actually feel like to open your eyes and see nothing? To have no idea where you're supposed to go or how to function? It breaks my heart. I'm constantly crying, wondering how things moved so fast, how she could lose her vision in just a week... so many questions, yet so few answers. 😢 Please, is anyone else going through something similar? Does anyone know if eye nerves can ever recover? I'm becoming so desperate and depressed because I'm chasing something impossible—I'm praying for things to just go back to normal. 😢

Unfortunately, you can't just repair nerves once they're gone. 😢
She’s going to have to dig deep and find the strength to use whatever abilities she still has left to live a full life. You need to be her rock through all of this. Look, the reality is what it is; crying and spiraling into despair isn't going to change anything. You have to look forward and learn how to live within this new reality instead of mourning what was lost. She hit a massive roadblock, but believe me, it isn't even the worst thing life can throw at you. She still has talent, she still has opportunities, and she still has every chance in the world to be happy and successful—just in a different way.
Here is an example of how one woman handled it.

And you really need to focus on yourself here, too. At the end of the day, this is primarily something your sister is navigating. By drowning in your own depression and desperation, you're actually becoming more of a burden to her than an actual source of support.

It’s been a while since I’ve checked in here... but I wanted to let you all know that my second mom lost her fight after a month and a half of battling it, and she passed away last week. The shock hasn't really worn off yet—I'm sitting here with thousands of questions and zero answers, and honestly, I'm mostly terrified of the ones that are going to hit me later... once the reality actually sinks in and I realize she's truly gone. I don't even know how to put it into words, except maybe just... too soon, too fast, way too fast, way too fast, way too fast.....

dustybadger81 said:I haven't been active on this forum for a while... but I wanted to reach out and let you know that my second mother lost her battle after a month and a half of fighting, and she passed away last week. The shock hasn't worn off yet; I have thousands of questions without answers, and what scares me most are the ones that will surface later, once the reality truly sinks in that she's gone. I don't quite know how to put it into words, other than: it was too sudden, too fast, just way too fast.....

This is absolutely devastating. I am so, so incredibly sorry... there aren't enough words to express how much my heart goes out to you... I'm just shaken by the news.

dustybadger81 said:I haven't been active on this forum for a while... but I wanted to let you all know that my second mom lost her battle after a month and a half of fighting and passed away last week. The shock hasn't worn off—I'm stuck with thousands of questions and zero answers. Honestly, I'm mostly terrified of the ones that will hit me later, once the reality truly sinks in that she’s gone. I don't even know how to put it into words, other than: too soon, too fast, just way too fast...

Please accept my deepest condolences... I honestly don't know what else to say.

dustybadger81 said:I haven't been active on this forum for a while... but I wanted to let you all know that my second mom lost her battle after a month and a half of fighting and passed away last week. I'm still in total shock. I have thousands of questions without answers, and what scares me most are the ones that will hit me later, once reality truly sinks in and I realize she's gone. I don't even know how to put it into words, other than saying it was too sudden, too fast, just way too fast.....

Please accept my deepest condolences. I am so incredibly sorry. Even though we haven't met, please hang in there—I can only imagine how hard this is for you right now.😢

dustybadger81, I am so incredibly sorry for your loss 😢
Look, life just keeps moving forward. Things are going to feel different now, but eventually, you'll find yourself smiling again, carrying those memories and that love right there in your heart. Just hang in there for now and let her rest in peace.

Angela Wright said:What can you do? Life moves on—it’ll look different, sure, but eventually, you'll find joy again, carrying those memories and that love in your heart. Just hang in there for now and let them rest in peace.

That's true, but it takes forever to finally reach that mindset...
but nobody ever tells me... how do you actually survive until then? How do you deal with this much pain, this massive void...
😢 🙂

I honestly never thought I’d be sitting here writing about this—it’s just one of those things where, no matter how hard you try to push those feelings down or convince yourself that something like this could never happen to someone in your own circle, reality eventually hits you. It really does. About four years ago, my dear little sister went in for what was supposed to be a routine, totally harmless mammogram checkup. That was the beginning of it all. They found changes in her breasts, and before we knew it, she was heading into surgery, then chemotherapy... then things seemed to stabilize for a bit, only for her to start chemo all over again—the most aggressive kind. Everything changed just a month ago when her doctor sat her down and told her the truth: the chemo isn't helping anymore; at this point, it’s actually doing more harm than good. Since that moment, it’s been this heartbreaking downward spiral—this agonizing struggle of a young woman who is essentially being left at home to fade away. She’s disappearing right before our eyes, right in front of her little boys, who are only 7 and 10. When I ask them, "How's Mom doing?" they just look at me and say, "She's just got a cold." It breaks my heart. And she—this fragile, beautiful woman—is just left there, alone in this fight. I try, I really do, to find the right words to help her, but it feels like such a failure. How am I even supposed to help? How can I possibly take some of this pain away from her? I just don't know.