Alright, I’m heading to see Chudy this Tuesday; this surgery would be an incredible opportunity. I'm just wondering how the billing process works at that clinic in Germany? I noticed they require some form of insurance, but does my Medicare cover any part of this? What are the approximate costs, and is there any way at all to secure financial assistance from anyone?
I apologize for asking all these questions here. It isn't that I'm being lazy; it's just that I am finding it genuinely difficult to track down any solid information on these matters. If anyone happens to be informed...
Dear Contina, thank you so much for finding the strength to write this out. I can only say that I intend to pass your advice along to help others facing similarly hopeless situations—if there is any silver lining to be found in such a terrible experience, it’s learning how to support one another.
I’ve actually joined the Glia association; they provide a wealth of useful information and have a wonderful psychologist who volunteers her time to truly listen to you. The best part is how they connect people facing similar struggles, so I’m hoping to attend their weekly meetings more often to hear about others' experiences. I fear that, at this moment, no one can truly understand us unless they are walking this exact same path—and even then, the entire burden falls squarely on our shoulders as family members.
Contina, where was your husband's tumor located? My Dad's is in the left frontal lobe, and it has already spread to the basal ganglia. On Tuesday, I’m taking all the documentation to see Dr. Chudy. He has been a true revelation for us, and I am sincerely hoping he will listen to my concerns.
Thank you so much. Could you please tell me if your husband is also dealing with Glioblastoma or something else? How is he doing lately, and what stage of treatment is he currently in? Is it possible for my Dad to undergo radiation and chemo first, and then move on to surgery? I am definitely going to seek a second opinion next week as soon as I get my hands on the documentation they took at the Radiology department; I just can't get away this week because I'm working from 9 to 8 every single day. That sounds absolutely awful... I would love to actually sit down and talk to the doctors about all of this, but nobody seems to have any time. Everyone is incredibly dismissive. One nurse even yelled at me so harshly that I had to go hide in the restroom just to cry. And all I did was ask her if she knew where the copier was so I could make copies of my Dad's test results... honestly, it was disgusting.
Henry performed the assessment over at the Mayo Clinic, where he was assigned to Dr. Mishir Krpan. She mentioned that she’s already signed off on everything and the medication is ready, but things have hit a complete standstill over in Radiology. I feel like I'm constantly being brushed off. They just keep telling me there's a queue of over 90 people ahead of us, including children. Honestly, that sounds terrifying. While I have nothing but respect for everyone else's struggles, I find it hard to believe there are truly that many urgent cases comparable to my Dad's situation. Most of those patients have already had surgery and are simply waiting for radiation, whereas he hasn't even begun his treatment yet.
Thanks for the tip; I'll definitely look into that clinic in Germany.
Dad hasn't undergone surgery because the tumor is in such an awkward spot, which is why I'm finding it hard to wrap my head around how it's been over a month since the Glioblastoma diagnosis and he still hasn't received any real medical intervention :/
Could someone please tell me how long your loved ones had to wait for radiation and chemo to actually start? Here at the Mayo Clinic, they're telling me it could be anywhere from four to six weeks, but I honestly don't know if my Dad has that much time to spare; he seems to be getting worse with every passing day. 😢
Susan Barnes82 said:They wouldn't even operate on my dad... three massive lesions on his liver... not even Mr. Jadrijevic could move them to surgery. He wept; he was terrified, just like a little child. He hadn't even reached retirement yet. In the end, that "inoperable" diagnosis turned out to be a blessing in disguise. Because we didn't go down that surgical route, he lived for three more incredible years following the Johanna Budwig diet—even though he used to absolutely crave meat and cooked foods. He went all in on life, and in return, he got those three years. He wanted more, but the illness wouldn't allow it. I will always remember him as a fighter, as a man who found pure joy in watching sunsets, watching a good Western, or listening to the sounds of a great syrtaki.
Tyler Rogers3, this is so incredibly hard to read. 😢 Remember him often, and keep those memories close. My own father became just like a little boy during his illness, too. Watching them become so helpless is truly, truly heartbreaking.
My dear friends, I previously mentioned that my Dad is battling an inoperable Glioblastoma. About ten days ago, he underwent mapping so he could begin chemotherapy and radiation. So, the mapping is complete, and we were told we just have to wait for him to be called in for treatment. It has been ten days now, and I went down to the Mayo Clinic to ask why things haven't moved forward, only to be told that the wait for an appointment is SIX TO EIGHT WEEKS?! Is this even possible? A friend's mother was called in for her treatment after only one week. This sounds absolutely insane; a brain tumor like this simply cannot wait. What am I supposed to do? I broke down crying right there and begged them to speed things up, but all they would tell me was that we should check back next week. The whole situation is incredibly stressful. Are they looking for money, or what is going on here?
Does anyone here have verified information on which immune boosters are actually safe to use while undergoing chemotherapy and radiation? My Dad's Glioblastoma is inoperable, so this will be his primary course of treatment. Also, does anyone know if it might become possible to surgically remove the tumor if the therapy successfully shrinks it? I would ideally ask the doctors directly, but honestly, it feels nearly impossible to get any clear information out of them...
I just wanted to give everyone an update: Dad is currently at the Mayo Clinic waiting for his stereotactic procedure scheduled for this Saturday. I can't shake this nagging feeling that the tumor might not be operable. How devastating is that for the whole prognosis? Honestly, I feel like I’d breathe easier if they could just get that evil thing out of his head; it haunts me to know it's sitting in there, and every time I look at him... I don't even know. It's just this overwhelming sense of helplessness and despair. I know most of you here have already walked this same path.
I've been reading "Fighting Cancer: A New Way of Life," and it has only made me more livid. They systematically destroy our health just to line their pockets, and we all just sit there in silence—suffering a little, getting angry for a moment, but once the pain and rage subside, we go right back to being submissive, picking up our groceries at Walmart and filling our carts with junk.
Angela Wright said:There is definitely a chance things could improve. It isn't just about the size of the tumor that determines if surgery is an option; we also have to look at how close it is to critical areas. Once the pathology results are back, the doctors will sit down and map out the next steps—deciding whether surgery is actually feasible or if they need to take a different route. As for the "wild" cell growth, that usually comes into play when you're looking at a recurrence after a previous surgery or if they've only managed a partial resection of the tumor.
Angela, from what I've gathered, you mentioned once that you regretted your mother choosing an alternative approach instead of the standard surgery followed by chemo or radiation. What kind of methods did you guys try, and looking back, what would you do differently if you had the chance?
Angela Wright said:This involves a highly precise, targeted cerebrospinal fluid puncture, which should ideally capture malignant cells if we are indeed dealing with a cancerous tumor. Unfortunately, I often find myself making an educated guess based solely on how things look on a CT scan, though let us certainly hope the PHD puncture—which remains the only truly reliable way to confirm exactly what we are facing—proves otherwise. Furthermore, performing a lumbar puncture to drain the fluid accumulating due to the tumor should provide some relief; the mass is exerting pressure on the brain, which is precisely why he is experiencing those neurological outbursts and other symptoms. I hope you are over at the neurosurgery department at the Mayo Clinic.
Yes, we are at the Mayo Clinic, and Dad actually got seen quite quickly. His tumor is 5cm, though I have no idea if that size makes it operable. It’s located in the frontal lobe. I’ve been reading through this thread and elsewhere, and apparently, these kinds of tumors can go absolutely haywire when surgeons touch them, becoming even more aggressive.
So, after the stereotactic procedure, will Dad's speech return to normal? It isn't that he's impossible to talk to, but for instance, he'll call my keys a "coat," or he won't be able to remember someone's name—today he actually called the ambulance driver by our dog's name.
What strikes me most is how he won't even dare to glance at his discharge papers, and I honestly don't know how he's going to react once the diagnosis is official. We aren't telling him anything yet because, truth be told, he gets as frightened as a little child. He has never been one for doctors; we practically had to force him into the ambulance once we realized something was seriously wrong.
Warm greetings to everyone. I have been meticulously reading through almost this entire thread, along with several other discussions regarding tumors.
Since I know every single case is unique, I am reaching out to ask for your help and insight.
A few days ago, my Dad was admitted to the hospital because he became disoriented; his behavior was erratic, and he was confusing basic concepts. Aside from that, he hasn't shown any other symptoms. An MRI revealed a mass that they suspect is a malignant tumor, specifically coded as C71.1. He is scheduled for stereotactic surgery this Tuesday, but I’m honestly struggling to understand exactly what that entails. Is it primarily for taking a sample, or is it more of a minor surgical procedure? It seems unusual to me that he would need to stay at the Mayo Clinic for five days just for that. One last question: what are the odds that a biopsy might reveal an error and show that the case is actually benign?
I realize we shouldn't dwell on "what ifs," but we are all incredibly on edge right now.
I also wanted to express how immensely important this group has been to all of us navigating this nightmare. If you hadn't been here last week... I think I would have lost my mind. But I'm sure you already know that. I would personally hand you a Nobel Prize for... well, for everything.🙂