Resources and support for families dealing with cancer and serious illness

restlessorca35 said:I have no idea what their actual job description entails, but I know for a fact that my brother and I ended up carrying mom ourselves because the ambulance showed up with just a driver lugging a 45-pound stretcher and a nurse who wouldn't even bother checking if my sister had her insurance card ready. Mom has been disabled since she was a kid, so she was already barely mobile long before this brain tumor showed up. When I asked why they weren't helping with the heavy lifting, they basically told me they used to call the fire department for that, but they don't feel like doing it anymore, and suggested we move to a building with an elevator.
The sheer ignorance and subsequent arrogance of certain doctors is something I don't even want to dwell on. I’ve never gone around calling myself anything other than "nurse" or "doctor," but there were times I actually had to bring up my dissertation topic just to get them to actually listen to me. It's pathetic.

I find that ego absolutely fascinating too, especially when it comes from the head nurses. Once I realized how they operated, I started playing the game myself—adopting that same "oh, I'm so incredibly competent" tone. Thank God I'm well-read and know my way around a search engine, because they’d often condescendingly address me as "colleague."😂 Using that kind of attitude usually got me exactly what I needed.👍
Basically, you just have to constantly stroke their egos and act all sympathetic toward their "difficult and unenviable circumstances," and then they'll be eating out of the palm of your hand.

Angela Wright said:people used to call me "colleague" all the time😂—I basically got everything I needed just by playing that part.👍
Basically, you just have to constantly stroke their egos and act sympathetic toward their "difficult and unfortunate circumstances," and then they’ll be eating out of your hand.

Honestly, that’s just depressing. It always reminds me of this one colleague who told me—right when I was finishing my PhD—that I should get some business cards made. When I gave her a weird look, she just deadpanned that they’d serve me well with both doctors and butchers😁. That was ages ago, back when there were meat shortages everywhere. Look, I get it—their jobs are tough, they deal with all kinds of people, and modern doctors who think they’re experts because of a Google search can be infuriating—but I just can't justify being rude or arrogant toward anyone perceived as "lower" than you
.

restlessorca35 said:It’s just heartbreaking to me. I always think back to a colleague who told me when I was finishing my PhD to go ahead and print my business cards, only to look at me like I was crazy before adding that they'd probably serve better as tools for doctors and butchers alike 😁. That was a long time ago, back when there were actual shortages in the grocery stores. I get it—their job is grueling, they deal with all kinds of people, and modern doctors who act like Google experts can drive them absolutely insane, but I just can't find an excuse for being rude or arrogant toward those who are more vulnerable.

Honestly, same here. And don't go thinking my stomach wasn't turning every single time; I had to play along, but since we were dealing with a situation where whether they complied or not meant the literal difference between life and death for my mom, I swallowed that crap. My only priority was making sure she got what she needed. I guess that's just how you toughen up in a country where "expertise" is sold by anyone with an internet connection.🤷
If that were even the worst part of this valley of tears. I thank God every day that I didn't turn out as stuck-up and silent as some people.

Linda Peterson37 how’s your dad doing? Did you guys manage to get him anything sorted to help ease his discomfort?

A friend of mine has a mom who was diagnosed with gliosarcoma—as far as I understand, it’s similar to glioblastoma, just a bit more aggressive. I honestly didn't realize there was actually something even tougher than glioblastoma out there, but apparently, this exists🤷

Angela Wright said:Thank God for the mannitol🙏! Can she take Dexedrine?
Can you please explain how they actually ended up administering it to mom? Like, what did you say, what was their response, all that? People need a blueprint for when things go south.

It’d probably be better if the nurse wrote this out since she was the one taking mom to the ER with my husband yesterday...
Anyway, they sat there waiting for over three hours, and it felt like everyone was just trying to brush them off or pass them along to someone else... classic! At first, they told us they weren't giving mom the mannitol because she didn't "need" it (or some nonsense like that), but then they ended up giving it to her anyway.
Meanwhile, some nurse had the brilliant idea to decide we shouldn't feed mom because her blood sugar was over 9 (?!?!?!).
Honestly, people, when you hear something like that from a supposed medical professional, it makes you want to go postal.
First of all, mom is a diabetic on insulin, so her blood sugar needs to be LOWERED—and 9 is already high (she'd eaten breakfast before getting to the hospital).

Now we're dealing with nonsense from mom's famous primary care physician. According to him, WE are now responsible for bringing all the paperwork to the board every single month (just so she can get a medical professional assigned to give her injections), even though he and his nurse have been handling everything until now.

Angela Wright said:Linda Peterson37 how is your dad doing? Did you manage to get anything done to make him more comfortable?

Thanks for asking. We're still fighting with the medical professionals. Check your PM.

brightgardener8, it would actually be incredibly helpful if your sister could write about how she handled that whole process of "nudging and persuading" the doctors. We've been fighting this exact battle for a while now.

Since waiting to start radiation or chemo after surgery isn't recommended, is there any way to prevent radiation machines from being out of commission for weeks at a time?
Back in 1999, my dad had to wait months for radiation after his first surgery because he developed a massive, nasty pressure sore that had to heal first—he couldn't even sit up, and he was in a coma for a few weeks following the procedure.
He physically couldn't go to radiation back then, but I'm thinking about the people who are physically ready to go, but can't because the equipment is broken!!!

Hi everyone,

I have a few questions and would really appreciate some insight if anyone here has experience with similar situations.

My aunt was recently diagnosed with a benign brain tumor. I don't know the exact location, but it’s about 3 cm, and she's scheduled for surgery. I'm struggling with how to approach her because she's avoiding the topic entirely. Is this typically considered a major surgery? And since it's benign, is there a high chance of a full recovery, or should we be bracing for something more serious down the road?

Then there's my grandfather. He's 76, but he has such an incredible zest for life that we always joke he'll be around for another 20 years easy. Lately, though, he's been dealing with blood clotting issues, and every Monday he has to head over to Seattle for various tests. Does anyone know what might be causing this, and is it something we should view as a life-threatening concern?

Finally, my husband has a procedure scheduled in a month to deal with a vein issue—they'll be removing a vein—but they plan to perform it using just a spinal injection rather than general anesthesia. He's feeling pretty anxious because someone told him that if the injection isn't done perfectly, there's a risk of paralysis. Is it actually that painful, and is that level of risk realistic?

All three of these people mean the world to me, and I can't help but worry. I'm just looking for some honest perspectives... what are your thoughts on their situations?

Thank you all in advance!

Sarah Hill81 said:Hey everyone,

I have a few questions if anyone out there can help me out.

My aunt was just diagnosed with a benign brain tumor. It’s about 3 cm, they aren't exactly sure of the location yet, and she’s heading into surgery. I’m honestly at a loss for how to handle this—she refuses to talk about it, which makes things incredibly awkward. Is this kind of surgery considered high-risk? And since it's benign, does that mean she's in the clear once it's out, or am I looking at a much darker road ahead?

Doctors can usually get a pretty good idea of whether a tumor is malignant just by looking at the CT scan, but nothing is official until they actually remove it and perform a tissue typing—what’s known as a pathology analysis. The surgery itself is intense; once they open the skull, things get serious, but if you've got a top-tier neurosurgeon on the case, the execution should be solid. The real wildcard is which medical center handles the procedure. Depending on where it happens, there’s always a risk of neurological side effects following surgery—things like weakness on one side of the body, or trouble with speech and walking. The brain is such a strange, incredible machine, though; it actually has this ability to shift functions from a damaged area over to a healthy part, but that takes months of hard work and repetition. They might even need to head to a rehab facility in a place like Scottsdale to get back on track. Honestly, just be thankful to God that it’s benign. Most brain tumors caught this early turn out to be malignant and incredibly nasty, often leaving doctors with very few options. Benign cases are actually a small minority. Many people would trade places with her in a heartbeat. Don't worry, everything is going to be okay.👍

My grandfather is 76, but honestly, the guy has so much fight in him that we fully expect him to be around for at least another 20 years. Lately, though, he’s been dealing with some blood clotting issues, and every Monday he has to head over to Seattle for a series of tests. What exactly is going on here, and is this actually life-threatening?

It’s most likely thrombosis. The guy is getting older, and between his genetics and his lifestyle, he’s paying the price. The bottom line is that he needs to be on blood thinners; otherwise, you risk a clot traveling to the heart or the brain and triggering a stroke. That’s why being under medical supervision is vital—it’s actually a good thing he’s being monitored like this. This is just part of aging, and honestly, it's a relief that he’s disciplined enough to stay on top of it and manage his health.

My husband has a procedure scheduled in a month to deal with a vein issue—they’re going to remove it—but they aren't planning on putting him under with general anesthesia. Instead, he's just getting a spinal injection. He’s feeling pretty anxious about how much pain he'll actually be in, especially since someone recently scared him by claiming that if the injection isn't performed perfectly, there's a risk of being left paralyzed.

All three of these people mean the world to me, and honestly, I’m feeling a bit anxious about it all. But I need the truth—what’s your take on what they're actually dealing with?

Thanks in advance!

It’s most likely a case of... Let's talk about epidurals.Look, let’s talk about spinal anesthesia. Sure, there’s always that inherent risk of spinal cord injury, but we have to be realistic here. The anesthesiologists performing these procedures are highly trained medical professionals—specialists who actually know what they're doing and take their responsibilities seriously. Think about it: thousands of women in this country undergo epidurals every single day before giving birth. If people were regularly being paralyzed by these procedures, someone would have spoken up by now. It would be front-page news everywhere, and everyone would know. Yes, the needle prick itself is uncomfortable, but it isn't unbearable, and it's over quickly.
Don't sweat it; everything is going to work out fine.

Angela Wright, thank you, thank you, thank you—I truly can't thank you enough for your answers! You've honestly made my day much brighter.

Angela Wright said:Hey Kate Ramos40, I have to be honest—neither me nor the fighter had ever heard of this specific brain tumor being classified as a sarcoma😕.
We did some digging online and found out that the treatment approach for this type is pretty much the same as it is for glioblastoma: surgery if they can get it all (which was done here), radiation, and chemo. For glioblastoma, they typically use Temozolomide.
http://path.upmc.edu/cases/case367/dx.html
I checked here and found tons of clinical trials currently running in the US, like immunotherapy. On this forum, we actually have dina9 dealing with ovarian cancer and dandelion seed, whose husband is fighting melanoma; both went the immunotherapy route and the results have been awesome so far. You might want to Google it—there could be similar trials happening in Europe too.
As for delaying the radiation, I really don't think that's a good move. Since the surgery was so recent, my take is that you should wait just long enough for the wound to heal and then jump straight into radiation. We need to wipe out those leftover cells ASAP to slow down any regrowth or cell division.

Anyway, I'm actually messaging the fighter at the same time; she mentioned she’d look into this specific cancer on Reddit to see what the standard protocol looks like. We'll let you know as soon as we find anything out.
Hang in there!

p.s. If it isn't too much trouble, could you please start a thread about gliosarcoma on the charity association forum? Since this is such a rare type of brain tumor, maybe someone there will have some solid answers or personal experience to share.

Angela Wright, first off, thank you so much for all the hard work and for looking out for us! It means a lot!
Regarding getting radiation in Miami, we checked and there's no way that department will be up and running in three weeks. That is totally unacceptable! We also heard that even in Washington, D.C., we wouldn't get seen anytime soon, and apparently, the wait for Temozolomide is just as bad.
Is it true that Temozolomide is given alongside radiation, or can the radiation start first?

Sorry if I'm being repetitive or asking things that have already been covered; I honestly don't know much about any of this.

I'll try to post the question on the charity forum this weekend. Seriously, kudos to you for being so proactive!

Sarah Hill81 said:My husband has a vein surgery scheduled in a month (they're removing a vein), but he’s only getting a spinal injection instead of general anesthesia. He wants to know if it's painful because someone scared him, saying you could end up paralyzed if the injection isn't done perfectly.
Thanks in advance!

Look, both my husband and I had surgeries a few years back where we both received epidural anesthesia, and everything went perfectly fine. The needle prick itself isn't even that bad; I barely even remember it. The only issue I ran into was afterward—you aren't supposed to get up for a little while after that kind of anesthesia, usually a day or two, depending on what the doctor advises. However, I didn't listen and tried to get up to go to the bathroom, which resulted in a week of unbearable headaches (even though they warned me about it). If it wasn't for those post-op headaches that forced me to stay in bed—which was totally my own fault—everything would have been flawless.
Hope this helps at least a little.

Kate Ramos40 said:Angela Wright, first off, I want to thank you for all the hard work and the genuine care you show everyone here. It makes such a difference! Thank you.
Regarding radiation therapy in Miami, we’ve confirmed there's absolutely no way that department will be operational in three weeks. It's completely unacceptable. We actually heard that even in Washington, D.C., they wouldn't be able to get an appointment any sooner, and apparently, the wait for Temozolomide is just as bad.
Is it true that Temozolomide is administered concurrently with radiation, or can the radiation treatment actually start first?

I apologize in advance if I'm being repetitive or asking something that's already been covered—I honestly don't know much about this subject.

I'm going to try posting this question on the association's forum this weekend, where I'll also make sure to pass along my compliments. Kudos to you for being so proactive!

My mom was taking Temozolomide at the same time as her radiation. I don't know the specific protocol for glioblastoma, but from what I understand, protocols vary significantly from one doctor to the next and from one hospital to another. Tomorrow, my fighter is heading to the Mayo Clinic, so she'll ask them how they would handle a case like yours.

Kate Ramos40 said:I’ve been following this forum for about a month now, ever since this illness hit our family—it’s a brain tumor.
I’m going to try to lay everything out in order. This involves my father-in-law, who is 64.
About a month and a half ago, a CT scan confirmed there was a tumor in his brain. At first, we thought it might be a metastasis, so they ran a chest X-ray immediately; those results came back clear. The doctor decided to move forward with surgery, which took place on February 7th, 2008. The procedure went well, and my father-in-law recovered beautifully. Seven days later, we had another CT. Everything looked good. However, we still didn't have an official diagnosis because we were waiting on the pathology report... and we waited... After a full month, we finally got it. It’s Glioblastoma Multiforme, Grade IV! We’re all back in a state of shock, scouring the internet and realizing just how brutal this is. My father-in-law is actually doing okay right now without any active treatment. Finally, last Monday, March 10th, he saw the oncologist with all his paperwork, and they recommended radiation starting in about a month?!
Is two months too long to wait, especially if it ends up being longer? What’s the situation like in Washington, D.C. regarding wait times? Where should we even begin?
Just to clarify, we are based out of Miami.

I am telling you from the bottom of my heart: get out of Miami!
I mean this with total seriousness. The absolute biggest mistake we ever made was relying on that Miami hospital!
Make exceptions only for the rare cases where people actually know what they're doing, but unfortunately, those people are just side characters there.
Wishing you the best. 🙂

Hey there, everyone—old friends and newcomers alike 🙂
We’re still stuck in this endless waiting game, and honestly, nothing has changed at all.
The new CT scan from the day before yesterday was just awful, so now we’re just sitting tight until Monday to see what the next move is...

I’ve been reading through your posts for a bit, so I decided to finally chime in. About five years ago, my mom was diagnosed with breast cancer—she ended up having a full mastectomy. The hardest part of this whole story isn't just the illness itself, but the fact that she went for her regular annual checkups at that garbage hospital in Seattle, and during her last exam and ultrasound back in February, they told her everything was fine—even though she specifically mentioned her breast felt painful and itchy. Anyway, that was February. She felt things weren't quite right all summer, and then finally, in September, a relative took her scans from the local clinic to a specialist in Washington, D.C., where the doctors immediately saw something was wrong and called her. Turns out, the cancer was already there back in February when the other doctors brushed her off. Honestly, I’m so livid I could scream at those incompetent doctors who looked her in the face and said she was fine. It was devastating for our family; those were easily the darkest days. Her surgery was performed by Dr. Ivo Đepina, and he was absolutely incredible. Chemotherapy was brutal for her—it’s the worst feeling in the world when you can’t help the person you love most. I’ll never forget when her hair started falling out and she asked me to shave it for her—I don't even know which one of us was crying harder. Mom was totally crushed at first; we couldn't find the words to lift her spirits, but later on, she absolutely blew us away with this inner strength she found. She became so resilient.
Fast forward five years later—thank God, Mom is doing well. She goes to her regular follow-ups in Washington, D.C., and we’re praying it stays that way. I still carry this constant fear, though, that the cancer might come back.
Then, about two and a half years ago, my grandpa was diagnosed with the most aggressive sarcoma that started from a tiny little mole. Once again, my family was going through absolute hell. To make matters worse, Grandpa was diabetic. Then, last September, he collapsed, and it turned out he had a brain tumor. He had surgery, but then he developed meningitis, followed by pneumonia, and finally, his beautiful heart just stopped beating three months ago. I’m sitting here crying just thinking about the suffering he went through while we stood there helpless—we couldn't comfort him or take the pain away; he passed right before our eyes. My grandma is still struggling with deep depression today, and seeing her breaks my heart.
Over the last four years, we’ve lost my grandma (Mom's mom), then my great-grandmother, then my dad's aunt died of stomach cancer, and her brother died just a month before my grandpa. Basically, my grandma lost her mother, sister, brother, and husband all within three years. We are a very tight-knit family, so this has been a massive blow to all of us.
I’ve always been a pretty emotional and nostalgic person, so all of this has really taken its toll on me. I cry so easily—one look at an old photo and I'm a mess. One memory and I'm sobbing. It's hard to find comfort, even though I don't show that much emotion to the outside world; I usually just wait until I'm alone in bed at night to let it all out. I wish I could talk to Grandma and comfort her, but I know I’d just end up crying and making things worse. I worry about her constantly too—she had a pre-heart attack scare a few years ago, and I can't bear the thought of losing her. I wouldn't say I'm paranoid, but so much bad stuff happened in such a short window that I'm just scared for everyone.
Sorry for the long vent—it's just easier to get it off my chest this way. Like I said, if I try to talk to anyone else about it, the tears just start flowing and the conversation is over.
Sending my best to everyone.

brightgardener8 said:Maybe it would be better if my sister wrote this, since she was the one taking mom to the ER with her husband yesterday...
Anyway, they were stuck waiting there for over three hours. It felt like everyone just wanted to get rid of them and pass them off to someone else... just the usual. At first, they told us they wouldn't give mom mannitol because she didn't need it (or some excuse like that), but then, in the end, she actually got it.
In the middle of all that, some medical professional made the brilliant observation that we shouldn't feed mom because her blood sugar was over 9 (?!?!?!).
Honestly, guys, when you hear stuff like that from someone who is supposed to be a medical expert, it makes you want to lose it.
First of all, mom is a diabetic on insulin, so her sugar needs to be LOWERED, and 9 is an elevated reading (she had eaten breakfast before we arrived at the hospital).

Now we're dealing with a whole other headache involving mom's primary care physician. According to him, WE are now responsible for bringing all the documentation to the board every single month (just so she can be assigned a medical professional to give her injections), even though until recently, he and his staff handled everything.

So, I called the emergency line. I didn't really need to explain anything, but they just told me the ambulance was on its way. Once we arrived, the ER doctor started "lecturing" me right off the bat, claiming that the ER isn't meant for cases like this—that patient transport should be organized through the primary doctor and that we should have had a referral for outpatient care. Basically, they acted like it was our fault for not planning this specific situation out perfectly... 😵
Back at the hospital, we were once again told that mom is actually doing okay considering her diagnosis, and that she doesn't actually need Mannitol because based on her labs (blood sugar, enzymes, urea, pupil response, etc.), there wasn't any sign that her condition was caused by edema or anything similar. So, we sat there waiting for about three hours, completely unsure if they were ever going to administer the Mannitol or not, only for it to turn out that she did receive it... after which she finally woke up and started talking. 😍
Throughout this whole ordeal, I actually stayed pretty quiet. I just explained to the doctor that this wasn't the first time this happened, and that mom has received Mannitol in similar situations before, which I guess was enough. 🙏
And that "brilliant" medical professional who tried to explain mom's glucose levels to me... and then later tried to explain things that actually fall within my own professional field, but misinterpreted everything absolutely incorrectly... honestly, what can I even say? It was pathetic.

Amanda Williams64 said:So, I called 911. I didn't actually have to explain much to them; they just told me an ambulance was on the way. Once they arrived, the ER doctor started lecturing me, basically implying this wasn't even an emergency situation—that patient transport should be coordinated through a primary care physician and that we should have had a referral for outpatient care. They acted like it was our fault for not planning for a crisis like this...😵
At the hospital, we were once again met with the idea that mom was actually doing fine given her diagnosis, and that she didn't even need Mannitol. According to their readings—blood sugar, enzymes, urea, pupil response, you name it—they claimed there was no sign that her condition was caused by edema or anything similar. So, we sat there waiting for about three hours, completely in the dark about whether they were even going to administer the Mannitol, only to find out in the end that she *did* get it... which finally led to her waking up and being able to speak. 😍
I didn't say much during the whole ordeal. I simply told the doctor that this isn't the first time this has happened and that mom has received Mannitol in these exact situations before, and apparently, that was enough. 🙏
And then there was that "brilliant" nurse who tried to explain mom's GCS to me... and later tried to explain things that actually fall within my own professional expertise, but she misinterpreted everything absolutely wrong. Honestly, what can I even tell you? It was pathetic.

I'm glad to hear mom rallied after the Mannitol. Things should feel a little easier for you now.
If the doctors are so certain that this isn't due to edema, I think it would be wise to get a new CT or brain MRI. That way, they can determine with absolute certainty whether the condition is caused by edema or something else entirely.
Best regards, hang in there.

I have been following this forum closely, which prompted my decision to reach out to you all today.
My sister’s eleven-year-old daughter is currently battling neurofibromatosis. She has two fibromas within her body—one positioned near her heart valve and another near her spine—both roughly the size of walnuts at this stage. These growths have actually deformed her sternum, causing it to protrude significantly, and they have caused a slight curvature in her spine, resulting in her tilting her head slightly to the right. Her doctors are recommending surgery, provided it is even feasible given the delicate placement of the neurofibromas. As she approaches puberty, there is a growing fear that the condition might become more aggressive. However, since this disease is quite rare here in the States, finding specialists in this specific field is proving to be quite a challenge. Does anyone have any recommendations or know where the best place would be to undergo thorough testing and potential surgical intervention?
I am truly hoping you might be able to offer some guidance.
Warm regards,

Thomas Wilson93 said:I’ve been reading through this forum, and I felt compelled to reach out.
My sister’s daughter is eleven years old, and she’s dealing with neurofibromatosis. She currently has two fibromas—one near her heart valve and another near her spine—both roughly the size of walnuts. They’ve already caused some significant issues; her sternum is visibly deformed, and her spine is starting to curve, causing her to tilt her head to the right. The doctors are recommending surgery, assuming it’s even feasible given where those tumors are positioned. With puberty approaching, there’s a real fear that the condition might escalate rapidly. The problem is, this disease is quite rare here in the States, so finding specialists who actually understand the nuances of this field is proving to be difficult. Does anyone have a recommendation or know where the best place would be to go for thorough testing and potential surgery?
Hoping you might be able to point me in the right direction.
Best regards,

You might want to try contacting a rare disease advocacy group in Washington, D.C. I suspect they could provide much more specialized information...