Resources and support for families dealing with cancer and serious illness

jadetinker42 said:Hello everyone, and my best wishes to all those fighting any kind of cancer;

I have a question, if anyone happens to have some experience to share;

A coworker's daughter (born in 1982) was diagnosed last year with the following cancer:

Osteosarcoma of the right femur, lateral side.
Pathological fracture of the distal part of the right femur.
PHD: High-grade malignant mesenchymal tumor with destructive growth. Differential diagnosis considers osteosarcoma with elements resembling malignant fibrous histiocytoma.

Basically, two months into last year, a tumor was found in her right knee. She first underwent three rounds of chemotherapy (doxorubicin 40+30+30mg, CDDP 120mg), and after that, because the knee was problematic, an endoprosthesis was implanted. Following that, she had another three rounds of chemo to wipe out any potential micro-tumor cells. Everything seemed to be improving until the 12th month, when a PET scan was performed, showing the following:

A whole-body scan was conducted. In the neck and shoulder girdle area, there is a slightly more intense accumulation of FDG due to mildly increased metabolism. In the right inguinal lymph node area, a somewhat more intense FDG accumulation of 7mm is recorded. In the distal part of the right thigh, laterally in the soft tissue projection near the prosthesis, there is a very intense pathological accumulation of FDG, measuring 43x45mm, with a max SUV of 16.8. There is also more intense FDG uptake in the abdominal region.
Other parts of the body appeared normal.
FINDINGS:
The PH findings indicate a recurrence of the tumor process with unclear margins. It is necessary to refer the patient for further chemotherapy under Dr. Šantek at the Mayo Clinic. A follow-up PET SCAN will be required, and if the results remain positive, radical surgery will be considered.

So, that’s the short version. Once a tumor enters the equation, things aren't good—that much is clear to everyone—but what my colleague and I are wondering is how serious this recurrence actually is now. If anyone can offer any advice, it would be greatly appreciated.

Best regards, and stay strong.

Unfortunately, a recurrence is serious... From what I've read, this is an aggressive type, though that doesn't mean it's untreatable. You should reach out to our Association for a New Day, specifically brightgardener8 (you can message him here on the forum, or send an email—you'll find the details under Information/Contact). He dealt with osteosarcoma in his femur and had a knee prosthesis implanted himself. He was treated by Dr. Šantek, just like my husband was. Definitely get in touch...

jadetinker42 said:Hello everyone. Sending my very best wishes to those currently fighting any form of tumor;

I have a question, if anyone here happens to have some experience to share;

A coworker’s daughter (born in 1982) was diagnosed last year with the following cancer:

Osteosarcoma of the right femur
Pathological fracture of the distal part of the right femur.
PHD: High-grade malignant mesenchymal tumor with destructive growth. Differential diagnosis considers osteosarcoma with elements suggestive of malignant fibrous histiocytoma.

Just one quick correction—technically, this isn't a carcinoma (which refers to malignant tumors originating from epithelial cells). This specific type of tumor is called a sarcoma, though like carcinomas, it is absolutely a malignant tumor. Sarcomas are malignant growths that develop in connective tissue, meaning they attack the bones (the most well-known type), muscles, fat, veins, tendons, and so on. Generally speaking, sarcomas are rarer and tend to develop in children and younger people. There are exceptions, of course—as with almost all types of cancer—so they can appear in older adults too.
The real issue with sarcoma is that because they are less common, they are frequently misdiagnosed. There just isn't enough clinical research being done, which means we lack those "smart," targeted drugs available for other cancers. Furthermore, sarcomas (much like certain other forms of cancer) can be incredibly aggressive and prone to drug resistance. Surgery remains the best treatment option. However, sarcomas don't really have specific markers or unique symptoms; because of that, they are often—very often—discovered only after they've grown large enough to make complete removal difficult.

Since my husband battled a soft tissue sarcoma, I’ve become somewhat obsessed with learning everything I can about these types of tumors.

I am asking those experienced 🧐 regarding our hospital systems to weigh in on a question: when you are discharged following surgery and the doctor hands you a discharge summary, wouldn't it be common sense to also receive the critical diagnostic findings related to the disease😕? Specifically, in our case, we are dealing with rectal cancer surgery involving inoperable liver metastases😠 that were identified via imaging just a day before the procedure.

Now, here is the logic of an average person 👋 (rather than a doctor):
given that we now have to face our greatest enemy, 🙂liver metastases, I believe it would be vital to know the initial size of those metastases (as seen on the scans) so that comparisons can be made throughout treatment. Wouldn't that be the only way to know if we are actually moving in the right direction???

Greetings to all...

Larry Miller17 As if I haven't heard this all before. It’s the same old song and dance, isn't it? Everyone thinks they have the magic formula, yet here we are, staring at the same predictable outcomes. Honestly, it feels like we're just circling the drain of mediocrity while pretending we're making progress. Someone should really tell them that wishful thinking isn't a strategy.
I’m reaching out to those of you with some real-world experience—I could use a bit of seasoned perspective on this. 🧐 Given the state of our hospital system, let me ask you this: when the time finally comes to be discharged after surgery—that moment when the doctor hands you your discharge papers—wouldn't it be common sense to demand a full copy of the key diagnostic findings related to your condition? It seems like a glaring oversight.😕To be perfectly blunt about our specific situation: we are looking at surgery for rectal carcinoma, complicated by the fact that there are inoperable metastases in the liver.😠 What exactly did those recordings show regarding the day right before the operation?

And now, just some reflections from an ordinary person. 👋 Instead of a doctor:
Now that we find ourselves forced to stand our ground against our greatest adversary... 🙂When dealing with liver metastases, I can't help but feel that knowing the initial size—at least what’s actually visible on those scans—is absolutely critical. It seems to me that without that baseline, you're essentially flying blind. You need that starting point to make meaningful comparisons as the treatment progresses. Otherwise, how are we supposed to gauge whether the therapy is actually working or if we're just spinning our wheels? You have to know if you're moving in the right direction.

Greetings, everyone...

My husband was under the care of a surgeon, and frankly, I don't even know what exactly he ended up being diagnosed with. To make matters worse, we were handed this incredibly vague discharge summary along with the pathology report—which, by the way, didn't even arrive until fifteen days after the surgery. We finally showed up at the hospital around 3:00 PM on a Friday (I remember the timing vividly). A nurse had actually called us ahead of time to mention that the surgeon was on call, which gave us this hopeful, perhaps naive, expectation that he might actually have a moment to sit down with us. Instead, the surgeon seemed visibly annoyed to see us. He just handed over the discharge papers, told us flat out that people don't just show up at the hospital at 3:00 in the afternoon, and insisted we contact the oncology department instead. And since it was a Friday afternoon, there was absolutely no one left to talk to. All we were left with in that moment was a grim diagnosis, an internet connection, and Google.

I can’t help but feel that surgeon could have handled himself with a bit more grace and tact. He had options, really. Instead of being so dismissive, he could have simply said, "Look, I don't personally specialize in this, but we have some truly top-tier oncologists right here in the city." It wouldn't have cost him anything to be human about it. But he didn't. And honestly, that's exactly why we went ahead and established the association—to make sure the right information gets out to everyone who needs it, ensuring no one feels like they're navigating this nightmare entirely on their own.

Larry Miller17 said:Can any experienced 🧐 help me out regarding our hospital system? When you're being discharged after surgery and the doctor hands over your vacation paperwork, shouldn't it be smart to also get the key findings about the illness itself😕? In our specific situation, we're dealing with rectal cancer surgery with inoperable liver metastases😠 that were caught on scans just the day before the procedure.

So, here's just some regular person thinking 👋 (instead of a doctor):
Now that we have to fight our biggest enemy, 🙂liver metastases, I feel like knowing the starting size of those spots (what showed up on the scans) would be huge... it would let us compare things during treatment to see if we're actually heading in the right direction!!!

Sending love to everyone...

I am so incredibly sorry you're going through this with your dad. Please don't let the doubts and questions weigh you down even more. Ask everything you need to ask... be persistent, even if you feel like you're being annoying. From my own experience navigating US hospitals, I've learned you can't just wait for them to take the initiative—for all sorts of reasons (it isn't always about being cold or careless!). Just remember the most important thing: you are fighting for a life. They aren't God, so while we should always be respectful, we shouldn't put them on a pedestal either. Getting angry or attacking them won't get you anywhere. If you're truly unhappy with the care, think long and hard, but remember you always have the option to switch doctors or change hospitals!
In your current situation, if your dad just got home, they usually don't hand over a super detailed vacation summary right away—it’s often just a brief note. At least, that was my experience a few times, and then later I'd get the full official version with everything included. However, after his first surgery, I asked the surgeon point-blank to write a detailed discharge summary immediately because I planned on getting a second opinion abroad, and he did it without any hassle at all.
A colleague of mine also managed to get everything, including the pathology reports, to take with her since they needed it for a second opinion. When things get critical, there are no excuses—you have every right to demand what they are able to give you!

They definitely have all the data and imaging regarding the metastases and their size on file, and that info is vital for his ongoing treatment. I'm guessing your dad will be back for a follow-up soon, so please try to find the right moment then to ask for everything you need.

When I say you have to FIGHT, I mean all of this is part of that battle!

gentlemoose62 said:I am sorry you are dealing with this regarding your father. Don't let the uncertainty and constant questioning weigh you down further. Whatever you need to know, whatever is keeping you up at night... go after it. Ask the questions. Be persistent, even if it feels tedious. From my own experience navigating American hospitals, I've learned that you can't just sit back and wait for them to take the initiative. It isn't always about negligence or lack of compassion—sometimes they just don't—but you have to realize that you are fighting for a life here. They aren't God, so there is no need for hostility, but respect doesn't mean being passive. Aggression won't get you results. If you aren't satisfied with the care, think carefully, but remember you always have the option to switch doctors or change hospitals.
In your current situation, if your father was just discharged, most places won't hand over a comprehensive discharge summary immediately; usually, it's just a brief note. That was my experience several times. Later, you eventually get the full, detailed version. However, after his first surgery, I asked the surgeon directly to write a full, detailed report right then because I planned to seek a second opinion abroad, and he did it without any issue.
A colleague of mine also received everything, including the pathology slides to take with her, since they needed them for a second opinion. When you are backed into a corner, there are no excuses; you have every right to demand what they are obligated to provide.

They certainly have all the data, scans, and details regarding the size of the metastases on file, which is vital for his ongoing treatment. I assume your father will be back for a follow-up soon, so look for that window of opportunity to ask everything you need to know.

When we say you have to FIGHT, this level of persistence is part of that fight.

Thanks to everyone for the quick replies...
To clarify, this is my partner's father, but I love him as if he were my own. He had his surgery in a different city, so his ongoing treatment will be handled at a hospital other than the one where the operation took place.
With the whole family under this much stress and so many logistics to manage, nobody had the energy to press the hospital for the records.
We will try calling to request copies of the reports from the doctor, and we'll see where that leads.

Thanks and regards to all.👍

Larry Miller17 said:Thanks everyone for getting back to me so fast...
It’s actually my wife's dad, but I love him just like he was my own. He had his surgery in a different city, so now he's continuing his treatment at a local hospital instead of where the operation happened.
With the whole family feeling the pressure and so much to get done, nobody really had the energy to go down to the hospital and hunt for the medical records.
We're going to try calling to request copies of the reports, and we'll just see how it goes.

Thanks again and best wishes to all👍

Oops, I didn't realize you were talking about your father-in-law! It's so sweet that you care for him this much and have stepped up to handle everything...
It makes total sense that you're all stressed out right now, but honestly, things will settle down bit by bit. The most important thing is that someone stays calm and does whatever it takes to ensure he gets the best care possible...
Best,👍

Look, everyone, there's a post here asking for help for a woman named Renata—she’s incredibly sick. Her brother reached out asking if anyone could chip in a few dollars to help her out... Just track down that post, give it a read, and then decide for yourselves if you want to help.

Kimberly Barrett20 said:Listen, folks, there’s a post floating around here asking for help for a woman named Renata who is incredibly sick. Her brother reached out asking if anyone would be willing to donate some dollars... just track down that post, read through the details, and make your own call on whether you want to help.

In here? I can't find it for the life of me.🤷 Can you please drop a link?

- "Are you coming home soon?"
- "Why's that?"😁
- "I'm just getting a little hungry." 🎉

It’s been forever since I last heard her say something like that. 👍

I suppose this should be seen as a good sign, but honestly, I feel like I’m cracking a bit more now, and I’m actually feeling more terrified than I did when we first got my mom's diagnosis from the doctors at the Mayo Clinic.
I'm being so irrational.👎

I'm going to go feed her, then I'll hop back on later tonight to write a few more things down.

Does anyone know what the legal radiation dose limits are for a person? I'm not sure if I'm phrasing this right, but I want to know if there are specific thresholds that shouldn't—or can't—be exceeded. What happens if those levels are surpassed? This concerns head radiation. If there's anyone here who actually understands this stuff and is willing to help, I can DM you the specifics.
thanks in advance.

Look, Linda Peterson37, I’m definitely no expert here, so don't look to me for medical advice—I have zero clue about the official radiation limits and all that technical stuff. But, I can tell you what happened with my own family. A relative of mine had to go through head radiation, and the whole thing lasted about two weeks. It was basically a daily grind, Monday through Friday, plus a few extra days here and there. As for the actual procedure? Honestly, it was over before we knew it. Like, five minutes tops, since they were just targeting one specific spot. Super quick.

Linda Peterson37 said:Does anyone know what the allowable radiation limits are for a person? I’m not sure if I’m phrasing this right, but I want to ask if there are specific thresholds for radiation exposure that shouldn't be exceeded, and what happens if they are? This is regarding head radiation. If there is someone here who truly understands this and is willing to offer advice, I can send details via PM.
thanks in advance.

Based on my wife's experience, the standard dose used by GMB is also the maximum—60 Gy. This is delivered in 30 fractions over 30 days (five days a week: Monday through Friday at 2 Gy per session). We were told once that reached that point, the radiation was done.
I've read that exceeding that amount is avoided because of radiation necrosis and the long-term negative impact on healthy brain tissue, so anything higher isn't considered standard practice.
That specific dosage, when combined with Temodal, is the gold standard for this type of brain tumor, assuming the patient responds well to the Temodal.
I haven't seen many places suggesting higher doses, except perhaps in certain clinical trials where radiation went up to 80 Gy, though there is no confirmed evidence that this actually extends life.
I did find mention somewhere that short-term, targeted radiation might be an option during a recurrence, provided a significant amount of time has passed since the full radiation cycle ended. But again, that mostly boils down to specific studies.
As far as I know, doctors here in the US don't exceed the standard guidelines.
I haven't specifically read about Grade III astrocytoma, but I assume the dose wouldn't go any higher than that. From what I've seen, your oncologist will work closely with the radiation engineer to recommend a dose they believe is tolerable.
Just stay strong and keep moving forward. To give you some encouragement, I heard about someone who had Grade III astrocytoma; she underwent three surgeries, finished chemotherapy with Temodal—which she paid for out of pocket—and various other treatments. Today, roughly seven years after her diagnosis, she is clear, with no signs of the tumor.

Best regards and hang in there.

rowdyraven6 and casualpanther1, thanks for the input. My dad finished his first round of radiation—16 sessions at 35.7 Gray tumor dose, plus 2 Gray to the tumor bed—and then completed six cycles of polychemotherapy using Vincristine and CCNU. Now they want to radiate the recurrence. We showed up for his appointment today only to find out the machine was broken! Given the doses he’s already taken, our family is worried. Could more radiation actually do more harm than good?

Stay strong, everyone!

Linda Peterson37 said:rowdyraven6 and casualpanther1, thanks so much for the input! After my dad's first surgery, he underwent radiation totaling 35.7 gray for the tumor dose, plus an additional 2 gray at the tumor site, followed by six cycles of polychemotherapy (Vincristine + CCNU). Now they're saying they need to radiate the recurrence, so he was scheduled for treatment today, but when we showed up—the machine was broken! Given the doses he’s already taken , none of us in the family know if more radiation could actually do more harm than good ?

Hang in there, everyone!

Honestly, they won't go beyond what the tumor can take😢. They'll likely administer whatever the math allows according to their protocols.
Stay strong, and I really hope they get that equipment fixed ASAP.

Hi everyone,

Unfortunately, I’m in the same boat...
I’ve spent days glued to my computer searching for anything regarding pancreatic cancer. It’s all grim stuff. However, whether by chance or design, I noticed that third-party sites always leave room to mention how statistics are just numbers in the end...
Sorry, bit of a tangent. My brain hasn't been functioning at its best these last two weeks...

I wanted to ask if anyone has dealt with this. What treatments were used? I read online about combining Abraxane with Gemcitabine for better results, but I assume that isn't what they do here... Is Gemcitabine the only option for pancreatic cancer in this facility?

Second question: Has anyone found success using those Myko San mushrooms?

And third—which is actually the most important—where should we go for treatment? I need advice or anything you can give. The medical care here might be fine, but the actual treatment protocol feels lacking...
We want a second, third, eighth, or even a fifteenth opinion just to ensure we’ve exhausted every single possibility. To be clear, my father is in a very strong mental state. He is determined to beat this. He has massive support around him, and no one has succumbed to depression (we aren't even showing sadness in front of him)...
...Rambling again. I wanted to ask where all the politicians and wealthy citizens go for treatment abroad? We don't have the money, but I will turn everything upside down to find them... Right now, I'm struggling just to find the names of institutions that even specialize in this...
...Please help...

brisktinker7 said:Hey everyone,

I’m in the same boat, unfortunately...
I’ve been glued to my computer for days researching pancreatic cancer, and naturally, it's all grim stuff. But whether it was intentional or just a coincidence, I noticed that the sidebars always leave a little space to remind you that, at the end of the day, statistics are just statistics...
Sorry, bit of a tangent—my brain hasn't been functioning at its best these last two weeks..

I wanted to ask if anyone here has dealt with this. What kind of treatments were used? I read online that combining Abraxane with Gemcitabine can yield better results, but I assume that’s not what they do here....is Gemcitabine the only option for pancreatic cancer in our hospitals?

Second question: has anyone actually seen benefits from using Myco San mushrooms?

And thirdly—which is actually the most important part—where should we go for treatment or advice? It seems like the medical care here is okay, but the actual specialized treatment protocols are a bit lacking....
We want a second, third, eighth, or even fifteenth opinion just to be absolutely sure we've exhausted every single possibility.... I should mention that my dad (who this is about) is in pretty good spirits; he's determined to beat this, he has a massive support system around him, and nobody has succumbed to depression (not even showing sadness in front of him)......
..I'm rambling again.... I wanted to ask where all those politicians and wealthy families go when they seek treatment abroad?.... We don't have unlimited funds, but I am willing to turn my whole world upside down to find them... right now, I'm just struggling to find the actual names of institutions that specialize in this..
..Please help.....

I'm certain someone here will reach out, but you should definitely check the website for the "for a new day" association. They have specific information on the website regarding various types of carcinoma.
The fact that your dad is optimistic and that you are providing such strong, high-quality support is huge—it’s arguably the number one prerequisite for landing on the bright side of those statistical charts. Remember, nobody who stayed negative made it through, and those who did survive were exclusively positive in their outlook and surrounded by love and support.
Hang in there and just take it one brave step at a time!👍

Thanks for the address. I actually saved it a while ago while I was reading through your posts about others, and I'll definitely be reaching out...
..honestly, starting off here on the forum felt a bit easier... maybe it sounds weird, but it’s less intimate than jumping straight in... I'll contact the association with my full name when the time comes.🙂

Anyway, if anyone has anything to add... thanks in advance. Kisses to everyone, hang in there. Everyone deals with this stuff differently. Our job is just to find good jokes online... in the papers... or by retelling old stories. We've always been a family that laughs a lot. We're pushing ourselves to do it more now, but hey, it works.

brisktinker7 said:Thanks for the link. I actually noted it down a while ago while I was reading through your posts about other people, so I'll definitely reach out...
..though honestly, staying on a Reddit thread felt a bit easier at first... maybe it sounds weird, but it doesn't feel quite as intense. When I contact the Non-profit organization, I'll give them my full legal name.🙂

Anyway, if anyone has anything they want to share... thanks in advance. Sending love to everyone, hang in there...everyone deals with this stuff differently. Our job is just to find good jokes online... or in the papers... or by retelling those old classics. We've always been the kind of family that laughs a lot... we're really leaning into that lately... and it works.

You don't need to join a formal Non-profit organization just to ask for help.😉 There's Reddit and there's our own site where you can stay completely anonymous. It’s better to spread the word across different platforms; you never know who might stumble upon it.

Look, I know I don't have to...🙂
It isn't about anonymity for me. It’s the sheer fact that it even reaches this point—that someone actually has to reach out and ask for help...
People just aren't used to it. This is the first cancer diagnosis we've had in a pretty large section of the family...