Support for families dealing with cancer and other serious illnesses (Part II)

The symptoms you're describing sound like they align with what we call Superior Vena Cava syndrome. What did the CT scan show? If a tumor or some enlarged lymph nodes are pressing against the superior vena cava, it makes it much harder for blood to flow back to the heart, which causes collateral circulation to develop—basically resulting in those visible, dilated veins on the chest. Please type out the CT findings for me. I'm an oncologist.

Kate Wells44 said:The symptoms you're describing sound a lot like what we call Superior Vena Cava syndrome... What did the CT show? If there's a tumor or some swollen lymph nodes putting pressure on the SVC, it makes it really hard for blood to flow back to the heart, so the body tries to compensate by developing collateral circulation—which usually shows up as those enlarged veins on the skin of the chest. Please, just type out the CT findings for me here. I'm an oncologist.

Hey there!
I'll send everything over via DM...

🙂

Hi there,

My father is battling prostate cancer, and unfortunately, it has metastasized. I read that he might be able to apply to the Department of Social Services for caregiver assistance benefits, so I was wondering if anyone here has gone through that process before.

The application process seems pretty complicated, and I really don't want to overwhelm him if there isn't a high chance of actually qualifying. One thing I am curious about is their property situation—besides the apartment they live in, my parents own an old house that’s basically just a weekend getaway, but it's officially registered as a primary residence. I wonder if that might act as a hurdle...

If anyone has any insight or experience with this, I would truly appreciate it. Thank you!

Robin Diaz4 said:When it comes to getting an exact diagnosis, if the person isn't even interested in treatment, what's really the point? A bronchoscopy was hands down the worst thing my father ever went through, and finding out the actual diagnosis just completely broke him mentally. So yeah, I totally get why some people would rather just not know.

Yeah, pretty much. That's about it. 😢

quietpilot87 said:Unfortunately, that’s just how it goes with cancer. There are always going to be question marks. If someone turns down chemo, you end up spiraling with the same questions you're asking now, just terrified of waiting for the day everything hits the fan. And you’ll constantly wonder if there was something else you could have done differently—if things would have turned out better. It’s obvious you’re wondering, and honestly, of course you are.
If someone decides to go through with chemo, a whole new set of worries just hits you. Will it actually work, or will it backfire? Will it be like what happened with my mother—where the chemo shrinks a massive tumor down to almost nothing, making you think she’s cured and finally in the clear, only for metastases to come crashing back six months later? How is her body even going to react? Can she actually handle the toll it takes? Look, it definitely feels easier when you have a plan and you're actually doing something about it, but chemo brings its own brand of terror. Cancer is just a brutal disease. It’s horrific for the patient and everyone around them because, for the longest time, people have always associated it with death and the end of the road. On the flip side, medical advancements have come a long way in recent years. And let’s be real—there's always that factor of people who defy all the odds, surviving much longer than expected or even beating the statistics entirely. Whether they do it with chemo or without.

From what I’ve learned, the absolute most important thing during this whole fight is keeping your chin up and doing everything in your power to stay mentally strong. If anyone can pull that off, it’s your dad. Honestly, it doesn't sound stupid at all when you say he views ignorance as a way to cope—I totally get why he’d feel that way.
Look, I get it—you guys are going through hell right now. But let’s be real: he’s the one carrying the heaviest load. Right now, he’s doing exactly what he feels will lift his spirits most and help him actually cope with this whole mess. As a family, there isn't much left to do besides just standing by him, no matter how draining or difficult it gets. Honestly, that's just what being human is all about. It's proof we've actually lived, loved, and shown up for one another.

I agree. And seriously, that’s just the reality of it. I know an oncologist who says he has a patient who’s been living for ten years straight with a type of cancer that usually kills people in eighteen months—if you even make it past three or four years, you're basically hitting the jackpot. We're fragile human beings, sure, but sometimes we are terrifyingly strong. There isn't a soul alive who can predict that ahead of time.

Yeah, exactly. Everyone’s making their own calls and doing what they think is best for them. Period.

Then you just have everyone around you getting all worked up because they flat-out refuse to accept it. 😁

Quick update:
Just got the new X-ray results back. One mass grew by 4 mm since the last scan five months ago, and they’re pushing for another bronchoscopy. That’s the only change in the five months between scans.

My father’s take was basically: "If this thing grows by 4 mm every 5 months, I'll call it a win."

So, I kind of played along with his "game" and told him it was just an X-ray—that it might not even be actual growth, since it all depends on how the radiation hit, what angle they took, and all that other technical blah blah blah.

He’s still refusing to do the bronchoscopy.

Question for anyone here who's dealt with lung cancer:
What’s the deal with the temperature curves?
How often were you running fevers, and at what point did you actually step in with antipyretics to bring them down?

Regarding the fever, it used to spike randomly without any predictable pattern—completely independent of the chemotherapy schedule. The only consistent thing I noticed was that it always seemed to hit at night. I remember that so clearly because I ended up waking up the nurse several times in the middle of the night. As soon as the thermometer crossed 37°C, we’d immediately start stripping off layers. The first time, my father refused to take his medication because he felt the fever wasn't high enough yet, so it shot all the way up to 40°C before we finally managed to get him cooled down.

Sarah King25 said:Yeah, something like that. 😢

Exactly. We all make our own calls based on what we think is best for us.

The people around us usually just get pissed off because they can't wrap their heads around it. 😁

Quick update:
New X-ray results came in. One mass grew by 4mm compared to the last scan five months ago, and they’re pushing for a bronchoscopy again. That’s the only change in the five months since the last checkup.

My father's take was: "If this thing keeps growing by 4mm every five months, I'll be happy about it."

So I kind of played along with his sarcasm and told him it's just an X-ray—it might not even be actual growth; it could just be how the radiation hit or the angle of the scan, blah blah blah technicalities.

He’s still refusing the bronchoscopy.

Question for anyone here dealing with lung cancer:
What has your experience been with temperature fluctuations?
How often did fever spikes occur, and at what levels did you actually bother using antipyretics to bring them down?

A 4mm increase isn't necessarily a definitive growth. Tumors aren't perfect geometric shapes, and everything depends on the viewing angle. It's like looking at a potato from different angles; the dimensions are going to look different every time.
He should really consider the bronchoscopy, though. A lot depends on who is performing it. Look for a specialist who really knows their stuff. It would be a shame to bail if the tumor is actually stable.

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Angela Wright said:>> An increase of 4mm can't necessarily be called an increase, because tumors aren't perfect shapes and it all depends on the angle you're looking from. If you look at a potato from different angles, its dimensions will vary.
She should still consider a bronchoscopy, though. It depends heavily on who performs it. Look around for someone really skilled. It would be a shame if he runs off when the tumor is actually stable.

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Yeah, I told him the exact same thing—that an X-ray isn't precise enough and that this isn't some massive growth.

The tumor has been stable for a year now, since the first check-up. In fact, after he finished the corticosteroids and antibiotics, it even showed a slight regression. He has two masses: one is 10 x 7 cm and the other is 5 x 3 cm. One is located apically on the right side, and the other is distally on the left lung. They told him they aren't even sure they could pull off a precise bronchoscopy—they aren't certain if they can even reach the area to get a biopsy, so there's a chance they might have to go in from the outside.

But honestly, my father is being incredibly stubborn about this. He doesn't want to hear a word about it. He's basically said he doesn't care about an exact diagnosis because he has zero interest in surgery, chemo, or radiation anyway. So, trying to talk him into it won't work—it hasn't worked for the last year, either. 🤷
On top of that, he’s cooked up this crazy theory in his head that if he goes for the bronchoscopy, everything will just start spiraling downhill. So, we're stuck. There's nothing left for us to do but respect his stance, no matter how much we want something else.

I'm also looking into immunotherapy right now, but it's crystal clear that until he agrees to the bronchoscopy to get a definitive diagnosis, we can't move forward. And he's refusing.

My head is spinning because I'm hearing so many different things from everyone else, and I'm struggling with whether I even have the "right" to force his hand. I know I'm the only person in the family he'd actually listen to if I just gave him a little more "push."

Then again, I'm not sure I could handle the fallout of pushing him too hard, especially since I see that he truly just doesn't want to know. He's just living with it, like some people live with arthritis.

I've read through almost this entire thread and the experiences are pretty much all similar, but I haven't really found an example where someone was *this* stubborn about refusing treatment and a diagnosis. It makes me feel a bit isolated in this. Deep down, I have total respect for his position and I feel a sense of peace, but then my brain starts overanalyzing, or I hear all these outside opinions and doctor pressures, and I lose my footing.

Sarah King25 said:(...) On's also cooked up this wild theory in his head where he thinks if he goes through with the bronchoscopy, everything will just spiral downhill. So, I guess we have no choice but to respect his call, regardless of what we might want for him.

What shows up as a mass on an X-ray and what’s actually happening in the body aren't always a perfect match. You can have a bunch of tiny spots surrounding one large mass, and being too aggressive with surgery could end up spreading things around. It’s not some crazy way of thinking, honestly. That’s exactly why surgeons insist on opening someone up—they need to see the real situation with their own eyes. If they were 100% certain it was just one isolated thing, I’d say just go for the bronchoscopy and deal with whatever happens next. But at the end of the day, we're back to the fact that every patient has the right to call their own shots. I get where he's coming from, and I get you, but I’m siding with Angela Wright here. To me, it seems like the lesser of two evils compared to radiation and chemo, and it might actually help him.

I’m going to stick to my guns on this one: I really don't see any point in putting someone through those uncomfortable examinations if they have absolutely no intention of following through with any of the treatment options. At that stage, what is a diagnosis even going to achieve for them?

Joseph Evans95 said:Hi there,

My father is battling prostate cancer, and unfortunately, it has already metastasized. I read somewhere that he might be eligible to apply to the Department of Social Services for caregiver assistance, so I was wondering if anyone here has gone through this before.

The application process sounds like a total headache, and I really don't want to bother them if there isn't a significant chance he'll actually qualify. Aside from their current apartment, my parents own an old house that’s basically just a weekend getaway, but it's officially registered as a primary residence—would that pose a problem for the assessment?

If anyone has any experience with this, I’d truly appreciate your help.

It is absolutely infuriating how oncology patients usually only find out about their right to receive $200 monthly for home care by hearing it from other patients. Honestly, just head down to the Department of Social Services; they will give you a checklist of everything you need to submit, and then comes the medical evaluation. It seems overwhelming, but don't let the bureaucracy stop you. Depending on the evaluation results—specifically, if they determine a severe disability—the benefit is granted regardless of income or property assets.

Unfortunately, we never actually got to the expert medical assessment. My father's illness progressed far too rapidly; he passed away just three months after his initial diagnosis. By the time we even realized that option was on the table and started gathering the necessary paperwork, everything was already over.
It was actually through this very forum that I first learned about that possibility. It’s honestly tragic that nobody within the healthcare system bothers to inform you about it.
What really infuriated me at the time was that my mother couldn't even qualify for caregiver leave to look after him, because apparently, you can only get that if the disease is already in its terminal stage (!?). I honestly have no idea what kind of illness you need to be battling in this country for them to consider you "terminal"...

Honestly, who is actually going to tell you what your rights are in this country??? My father was entitled to certain benefits, and the VA just kept stonewalling him for two years—claiming he didn't qualify when he absolutely did. In the end, he had to print out his own documentation and practically hand-deliver it to them just to get what he should have received ages ago. I don't fully grasp how their whole pyramid scheme of credits and bonuses works, but I’ve got this nagging feeling they intentionally keep patients in the dark about what they're actually entitled to.

Lisa Perez37 said:Honestly, who is even going to point you in the right direction in this country??? My father thought he was entitled to something, but the Veterans Administration kept turning him down for two years, claiming he didn't qualify. In the end, he just had to print out his social security number and take it to them himself (which he should have been able to do much sooner). I don't quite understand how their whole pyramid scheme of benefits and bonuses works, but I get the feeling they intentionally withhold information about what patients are actually entitled to.

What is the VA?

I grabbed the form from the DSS website, filled it out, and I'll be handing it in over the next few days. If anyone has gone through the disability assessment process, I'd love to know how long the wait usually is..

I am just so disappointed in the government (I really didn't think it could get any worse than this) but withholding info from patients who are retirees on minimum pensions—and dealing with permanent health issues and losing their independence—is just awful.

Joseph Evans95 said:What exactly is an LOM?

Just a general practitioner or family doctor.

Joseph Evans95 said:What exactly is LOM?

I grabbed the form from the American Cancer Society website, filled it out, and I'll be turning it in within the next few days. If anyone here has dealt with the disability evaluation process before, I'd love to know how long the wait actually is...

Honestly, I am just so disillusioned with this country. I didn't think it was possible to sink any lower, but withholding information from patients who are retirees living on minimal pensions—people whose health is already permanently compromised and who struggle with basic independence—is just appalling. It’s a nightmare.

The wait for an evaluation averages about 3 to 4 months (San Diego). The only silver lining in this whole mess is that once they approve you, the benefits are backdated to the day you filed the application.

Robin Diaz4 said:Unfortunately, we never got to the point of getting an evaluation. My father's illness progressed far too rapidly; he passed away just three months after his diagnosis. By the time we learned about that option and started gathering all the necessary paperwork, everything was already over.
I actually discovered that possibility right here on this forum, which is truly tragic given that no one in the healthcare system bothers to inform you about it.

We went through the exact same thing, and it hit me incredibly hard. I decided to take a stand against the bureaucracy and file an administrative lawsuit, especially since there is already a legal precedent stating that the amount a deceased person would have been entitled to is something that can be inherited. This isn't about the money for me; it’s about ensuring someone at the Department of Health is held accountable for unlawful conduct and intentionally dragging out procedures. Under the Administrative Procedure Act, social welfare rights should be handled urgently, and decisions in administrative proceedings are supposed to be finalized within a maximum of 60 days.

Joseph Evans95 said:What exactly is LOM?

I downloaded the form from the American Cancer Society website, filled it out, and plan to submit it within the next few days. If anyone here has experience dealing with the Institute for Simulation, I would be very interested to know how long the wait times typically are..

I am truly disappointed in the government; I honestly didn't think it could get any worse, yet here we are. Withholding information from patients who are retirees living on minimal pensions—people facing irreversible health issues and a loss of independence in their daily lives—is simply appalling.

In our experience, we were left waiting indefinitely (our appointment wasn't scheduled until five months after we filed the request). It was only after my mother passed away that I discovered the Administrative Procedure Act, which clearly states:

Deadline for issuing a decision

Article 101.

(1) In cases requiring immediate resolution at the request of a party, the official is obligated to issue and deliver the decision without delay, and no later than 30 days from the date a formal request is submitted.

(2) In cases involving an investigative procedure at the request of a party, the official is obligated to issue and deliver the decision to the party no later than within 60 days of the date the formal request is submitted.

(3) If the official fails to issue and deliver the decision within the prescribed timeframe, the party maintains the right to file an appeal or initiate an administrative lawsuit.

Presumption of approval of a party's request

Article 102.

(1) When stipulated by law, a party's request shall be deemed approved if a public law body, in a proceeding initiated by a formal request where it is authorized to resolve the administrative matter directly, fails to issue a decision within the prescribed period.

(2) The party has the right to request that the public law body issue a decision establishing that the party's request has been approved. The public law body is then obligated to issue such a decision within eight days of the party's request.

I suggest you try to push for a decision immediately once those 60 days have passed. They likely won't want to comply, but it is certainly worth the effort. Based on what we went through: double-check everything the staff at the American Cancer Society tells you, because they often provide information—and act—in ways that contradict the actual legal regulations. Best of luck!

Hello everyone!
Does anyone have any experience with the CyberKnife specialty hospital over in San Diego?

I was looking for a specific thread where I could post this question, but I just can't seem to find one.
My father-in-law was recently diagnosed with a liver tumor. He had surgery to remove a tumor from his colon just before the New Year, and he underwent chemotherapy from the start of this year through June. Now, unfortunately, the latest scans show that it has spread to his liver. We are usually under the care of the medical team in Seattle, but the family has decided to seek a second opinion at a specialized hospital instead.

Thanks in advance!

Megan Rogers4 said:In our experience, we never actually received a response—the appointment wasn't even scheduled until five months after we submitted the request. It was only after my mother passed away that I realized there is an Administrative Procedure Act, which states:

The deadline for issuing a decision.

Article 101.

Under the Administrative Procedure Act, an official is required to issue and deliver a decision immediately upon a client's request, or at the very latest, within 30 days of receiving a formal application.

In cases where an inquiry is initiated at a party's request, I believe the official in charge is required to issue and deliver the decision to that party within the timeframe established by the Administrative Procedure Act. Within a 60-day window. It should be from the date the formal request was submitted.

If an official fails to issue a decision and deliver it to a citizen within the timeframe required by the Administrative Procedure Act, I guess the individual then has the right to file an appeal or perhaps initiate an administrative lawsuit.

I guess we should probably look into the preliminary assessment for approving a client's request.

Article 102.

If it’s written into the law, I guess we have to assume the party's request is officially approved if a public agency fails to issue a decision within the required timeframe during a formal proceeding they're authorized to handle.

A party has the right to request that a public law entity issue a formal decision confirming that their application has been accepted. Under the Administrative Procedure Act, the agency is required to issue that decision within eight days of the request being made.

Maybe try to push them for a solution as soon as that 60-day window closes... they probably won't want to budge, but it might be worth a shot. Based on my experience, I'd suggest double-checking everything the American Cancer Society tells you, because sometimes their info and actions don't quite align with the Administrative Procedure Act. Good luck!

Thanks. Yeah, I’ve heard you really have to double-check everything with the American Cancer Society. I just submitted the paperwork for Dad, and now we're just waiting—apparently, the American Cancer Society might call us back for more details. I honestly can't figure out why they didn't just grab all that info when the papers were originally presented... but oh well. Regarding those deadlines mentioned, do they actually apply to the simulation stage? It feels like it might be nearly impossible to get them to hurry things up. 😢 😢 😢 To be honest, I don't really expect the simulation to be finished before January, though I'm certainly hoping it doesn't take any longer than that.

I am so incredibly sorry for what you're going through and for your loss. Just to make sure I'm following correctly—was your mom only called in for the evaluation after five months had passed, or did I misunderstand that part?

neonmoose27 said:Hi everyone!
Has anyone here had any experience with the CyberKnife specialty hospital over in San Diego?

The only thing I know for sure is that they won't provide any consultation based on "outside" medical records; essentially, if you want them to look at you, you have to undergo all your testing right there at their facility. Back when my dad was sick, they weren't part of the standard insurance network—I'm not entirely sure if that's changed since then. On top of that, he really wasn't interested in repeating every single test from scratch. Plus, to even go to them for testing, he would have had to be formally discharged from his current hospital, so we just decided to pass on it altogether.