Support resources for families dealing with cancer and other serious illnesses

Chloe Sullivan17 said:My mom just got home from the hospital because my grandmother ended up back there again. Both of us are left feeling pretty confused by the diagnostic report 😕—so if anyone can help clarify things, I’d really appreciate it. 🙂

If someone is diagnosed with metastases on both the right and left sides of the brain, causing swelling on one side—is that how it works? Is it actually possible for metastases on one side to recede or disappear while the other side remains swollen and shows no visible signs of metastasis?

Currently, none of the results (including the MRI) show any tumors or metastases, yet the doctors are insisting it could still have been metastatic disease, even if it isn't showing up on the scans.

It's difficult to give a definitive answer to your question. What I do know is that micrometastases exist—the kind that current diagnostic tools simply can't detect. Because of that, no one can say for certain whether they are present or not. My advice? You really need to hash this out directly with the doctors.

Chloe Sullivan17 said:My mom just got home from the hospital because my grandma ended up back there again. Both she and I are pretty confused by the explanation of the 😕 results, so I have a few questions. If anyone can help make sense of this, I’d really appreciate it. 🙂

If someone is diagnosed with metastases on both the right and left sides of the brain, causing one side to swell, what causes that? Is it actually possible for the metastases on one side to recede or vanish while the other side stays swollen and shows no visible metastases?

Right now, all the tests—including the MRI—don't show any metastases or tumors, yet the doctors are insisting it could still have been metastases, even if they aren't showing up on the scans.

Edemas happen as a direct consequence of tumor growth; they trigger neurological issues because that intracranial pressure starts squeezing the brain and hitting specific nerve centers. Honestly, sometimes it's incredibly difficult to distinguish actual tumor mass or necrosis from swelling on an imaging scan.
It is entirely possible for metastases to disappear if there's a positive response to radiation or chemo.

Angela Wright, how are you and the little one doing?

brisksurfer said:Angela, how are you and the little one doing?

We're doing okay. We finally made it home after being stuck in the hospital for 74 days straight. Honestly, my mental state is finally starting to feel a bit more stable now that we aren't living in a clinical room. The baby is making progress and growing fast. They've already reached out to us about starting physical therapy.

Angela Wright, I'm seriously glad you're back. Honestly, this thread hits way too close to home. It’s been heavy lately—I’ve known three young women die from cancer in what feels like no time at all, but I just couldn't bring myself to post anything about it... then you wrote that part about your baby, and I just froze. I had to get in here and write something immediately...

Angela Wright said:Well, we are finally home after 74 days in the hospital. I feel so much better mentally now. The little one is making progress and growing fast. They've already called us in for rehab.

I am incredibly happy for you. You have been in my thoughts constantly. Sending kisses to both you and the baby!

Oh man, I am just so incredibly happy for you all, Angela Wright!!!! I’m pulling for you and wishing you the absolute fastest recovery possible.:*

It’s about time someone actually spoke up about this.
I can't help but think back to how many hours my mom spent just sitting there, waiting for an ambulance while she was trying to get to her chemo treatments. 😢

So, I found out today that my dad has lung cancer that’s already spread to his brain and a rib. I’ve been getting these little pieces of the puzzle for about two weeks now while we waited for test results, but today was the day the doctor—who happens to be a longtime family friend—laid it all out for me. According to the statistics, she said he might only have about a year left given the diagnosis. I’m only 20, and honestly, I’ve never had to deal with anything this heavy before. Since I'm the only one in the house who hasn't completely broken down yet, I'm trying to stay composed and hold it together for everyone else who is falling apart, but deep down, I don't really know where I stand. Thank God I don't personally know anyone who has walked this exact path, but I would really love to talk to someone who has actually lived through this kind of reality—someone who can tell me if it’s true that time eventually heals everything. If there’s anyone here going through the same thing, or if you’ve been through it and would be open to talking to someone who truly gets it, please reach out; it would be so nice to connect, maybe even in person. I know I could just vent to my friends or a therapist, but I feel like nobody will ever understand the weight of this quite like someone who has stood right where I am. How do you even live with the knowledge that you're going to lose your dad, or the feeling that you've already lost him? Sorry for the long monologue, but this is my first time posting here.

Sorry if I'm totally off-topic here, but I've got a question
Someone really dear to me was just diagnosed with melanoma. They need to get surgery abroad because things just aren't getting done properly here at home, and since Medicare covers the costs, I'm wondering how long the approval process actually takes. Is it a never-ending nightmare or do they actually move fast when it's a Stage 3 melanoma?
Does anyone know how this works?

Robin Gray8 said:Sorry if this is off-topic, but I have a question.
I have someone very dear to me who has melanoma. They need surgery abroad because the specialized care we need isn't available here, and Medicare covers the costs. Does anyone know how long it takes for them to approve it? Is it an ongoing thing or does the approval come through quickly? It's stage 3 melanoma.
Does anyone know?

Look, if they're covering the cost, then the approval is already a done deal.

Thanks, Angela Wright. So, if I drop off those papers on Monday, does she give me the okay right then and there? Like, could I actually be starting at the OP 😕 by next week? Or am I looking at dropping them off and then just sitting around waiting for a week, maybe two... who knows how long this takes

Robin Gray8 said:Thanks, Angela. So, if she drops off the paperwork on Monday, does she get immediate confirmation? Like, could she actually be at the 😕 by next week? Or does she hand over the papers and then just sit there waiting for two, three weeks... who knows how long

Hold on, did she actually get word from Medicare that they’re covering the cost yet?
Generally, the standard procedure is that you have to get a formal written recommendation from an American hospital stating that the procedure needs to happen abroad—basically proving that the necessary equipment, expertise, or specific conditions aren't available here in the States. That recommendation gets sent to the Medicare Administration, and then they go through their whole process of reviewing it to decide whether or not to greenlight the coverage for overseas treatment.
Depending on where she goes, things vary wildly. Some clinics demand a deposit upfront or a financial guarantee before they even see you, while others just bill you once everything is finished. That part of the process is extremely case-by-case. I don't have first-hand experience with the billing side of things, though. I think fighterica might be able to shed some light on how that works.

George Bishop2 said:Today I found out my dad has lung cancer that’s already spread to his brain and a rib. I’ve been getting bits and pieces of this news for two weeks while all the tests were running, but today everything finally hit home when the doctor—who is actually a family friend—laid it all out for me. According to the statistics, she says he might only have a year left with this diagnosis. I’m only 20 years old and I have never dealt with anything this heavy in my life. I’m currently the only one in my family who isn't breaking down; I’m staying strong for everyone else because they’re absolutely falling apart, but honestly, I don't know how much longer I can hold it together myself. Thank God I don't personally know anyone who has gone through this, but I really wish I could talk to someone who has lived through it—someone who can tell me that no matter what happens, time eventually heals the wounds. If there is anyone here in the same boat as me, or if you’ve been through something similar and are willing to talk to someone who truly understands, please reach out. It would be nice to connect, maybe even in person. I know I can talk to my friends or a therapist, but I just know nobody will understand quite like someone who has actually walked this path. How do you live with the reality that you’re going to lose your dad, or the fact that you already have? Sorry for the monologue, but this is my very first post on this forum.

I lost my dad to lung cancer, so I know a thing or two about what you're going through 😢 ....feel free to send me a private message if you want to talk....

Hang in there!!! 😘

So, her oncologist actually gave her a solid lead regarding Medicare. They said getting the approval shouldn't be much of a headache since they don't even perform this specific type of procedure here in the States anyway. So, she's heading in this Monday to hand over all the paperwork and that proposal. 🤷

Hey there,

So, my daughter is heading over to a clinic in Germany for some checkups and treatment—which is a lot to deal with, honestly—and I was wondering if there’s any way to get a partial reimbursement from Medicare. Does anyone know which specific costs Medicare actually covers in these kinds of situations?

Best,

George Sullivan31

stormynomad20 said:My mother passed away today. Even though I’ve never been much of a believer, I truly hope her soul has found some peace.

Dear stormynomad20, how are you holding up?

Robin Gray8 said:Her oncologist actually gave her a solid lead regarding Medicare. Apparently, since they don't even perform this specific type of procedure here in the States, getting the approval should be a breeze. She’s planning to hand over all the paperwork and the formal proposal this coming Monday. 🤷

So, she hasn't received the green light yet. The Medicare Administration still needs to review everything and make an official call. You’ll likely end up with some sort of paperwork justifying why those out-of-country medical expenses are necessary. It really comes down to how much skin you have in the game: some people sit around waiting for that formal approval, while others just dive straight into treatment abroad. It all depends on what the international clinics are demanding and how much risk someone is willing to stomach if the Medicare folks decide to deny the claim later. As for how long this takes? Honestly, there's no telling. Given how messy and unpredictable these government agencies can be, anything goes.

George Sullivan31 said:Greetings.

My daughter is heading over to a clinic in Germany for some exams and treatment, so I’m trying to figure out if I can actually get any money back from Medicare. Does anyone know what specific costs the Medicare Administration will actually cover or reimburse?

Best regards,

George Sullivan31

If you're looking to get reimbursed for medical treatment abroad, you can only claim expenses for procedures or therapies that simply aren't available here in the States—whether that's because our doctors lack the specific expertise, the necessary technology, or some other specialized capability.
It usually plays out like this: some specialist at a government agency—not someone in private practice, but a bureaucrat—decides that a certain procedure just isn't feasible under our current system. You take your proposal to a family doctor, who then writes up the necessary paperwork, which eventually lands on a Medicare Administration committee desk to be either rubber-stamped or flat-out rejected.
I'm not entirely sure if that's the right direction to take, but your primary care physician should be able to give you a definitive answer.

Angela Wright said:So, they haven't actually greenlit it yet. You have to wait for the Medicare Administration commission to make their call. You’ll probably end up with some official paperwork that basically justifies why you need to seek treatment abroad—it's all about proving those costs are necessary. Some people sit tight and wait for the thumbs-up, while others just dive right in and start treatment overseas, depending on what the foreign clinics require and how much they're willing to gamble on whether the Medicare Administration ends up denying the claim later. And honestly? The timeline is anyone's guess. Given how messy and unpredictable that whole institution can be, anything goes.

When you're looking at getting treated out of the country, you can usually only get reimbursed for exams or therapies that simply aren't available here in the States—whether that's because we lack the specific expertise, the tech, or whatever else.
The usual drill is having a specialist from a public institution—not some private doctor—write up a note stating that the procedure just can't be done domestically. Then you take that recommendation to your primary care physician, who fills out the necessary forms to be sent over to the Medicare Administration for approval or denial.
I'm not 100% certain if that's exactly how the gears turn, but your family doctor should definitely know the ropes.

Dear Angela Wright,

Thanks so much for the reply.

Best regards,

George Sullivan31

It’s been a while since I last posted here. Things have been pretty heavy lately regarding my treatment—everything from finding a clinic that can actually perform the surgery to the current mess of waiting on Medicare to approve my treatment over in Switzerland. My health has taken a noticeable turn for the worse. The tumor is aggressive and growing fast, which makes this waiting game even harder to stomach. But honestly? I haven't lost hope that I'll make it to the surgery in time.

Sending love to everyone. Please keep the positive thoughts coming.😉