Support resources for families dealing with cancer and other serious illnesses

Lisa White54 said:At the last checkup, when he basically said there’s no cancer and the only thing her husband is actually dealing with is PTSD... I mean, seriously? Who wouldn't want that instead!

Ugh, man, that totally hits too close to home. It reminds me of my late grandma back in '99 when she suddenly started fading fast and struggling to catch her breath. They did X-rays of her lungs three separate times at the community health center in Santa Monica, and every single time they told us her lungs looked perfectly fine. She went through every test under the sun and everything came back "just okay," so her primary care doctor just had the nerve to brush her off, telling us she needed to see a psychiatrist because she was just imagining things...

So, we finally decided to bypass them and take her to a private specialist for lung imaging, and the results were absolutely devastating:

Doctor from Smalltown, USA:

Right-sided small cell lung cancer.
Metastasis in the right lateral mediastinal lymph nodes.

Diagnosis was made at the end of April, and by May 31st, she was already gone...

😢

My entire world just imploded three weeks ago. What started as a routine checkup for what we thought was just a common cold turned into a nightmare when they diagnosed my wife with Small Cell Lung Cancer.
I am absolutely terrified—it’s like I can’t even wrap my head around the fact that this is actually happening. The specialist overseeing her care told me there's maybe a 20% chance, and perhaps an 18-month window. I haven't told her the truth yet. Honestly? I just looked her in the eye and said there's an 80% chance she'll be fine. I'm scared that if I tell her the real numbers, it'll just crush her right at the beginning of treatment—even though she's one of the strongest, most steady people I've ever known. Maybe lying isn't the "right" thing to do, but God, I'm just so afraid... What am I supposed to do now? How do you pretend everything is okay? How am I supposed to look at the person I love and still try to find joy in the future?

Megan Fowler78 said:My entire world just collapsed three weeks ago. What started as a routine checkup for a common cold turned into a nightmare when my wife was diagnosed with Small Cell Lung Cancer.
I am terrified, and I honestly can't wrap my head around the fact that this is actually happening. The doctor here told me there’s maybe a 20% chance, perhaps an 18-month window. I haven't been honest with my wife about the reality; I told her she has an 80% chance of recovery. I’m scared that if I tell her the truth, it’ll break her right at the beginning of treatment, even though she’s incredibly strong and steady. Maybe lying isn't the right move, but the fear is overwhelming. What do I do now? How am I supposed to pretend everything is fine? How can I look at the person I love most and try to feel optimistic about the future?...

When you're staring down a diagnosis like this, statistics don't mean a damn thing. Whether the math says 90% or 20%, the fear sitting in your gut feels exactly the same. You have to grab whatever slim margin you've got and fight. Don't let those numbers paralyze you—they include the people who beat the odds, too. And they beat them because they fought like hell and believed they could win.

So, we’ve started digging into everything to figure out what's actually going on. Fingers crossed my husband is just as healthy as they say he is. He’s heading to an ENT specialist today because the PET CT results suggested it, and then he’s got a urologist appointment next week. We’re just taking it one step at a time, trying to tackle whatever issues pop up through our primary care doctor. Honestly, thank God we finally got a new GP who actually gives a damn and wants to help us out. Regarding that bone scan, I wouldn't push for it right now—not until the X-ray results maybe call for a skeletal scintigraphy later down the line. Once we get through this round of testing, we'll see if a bone scan is even necessary based on what the specialists tell us.

Megan Fowler78 said:My whole world just fell apart three weeks ago. My wife went in for a routine checkup because she thought it was just a common cold, and out of nowhere, they drop this bomb: Small Cell Lung Cancer.
I’m terrified. Honestly, I can't even wrap my head around the fact that this is actually happening... The doctor here told me there's maybe a 20% chance and perhaps 18 months. I haven't told my wife the real numbers yet—I actually lied and told her there's an 80% chance she'll be fine... I'm scared that if I tell her what the doctor really said, it'll just break her right at the start of treatment, even though she's a tough, steady person. Maybe lying isn't the move, but I'm just so freaking scared... What do I do now? How am I supposed to act like everything is okay? How do I look at the person I love and try to dream about a future?...

Look, I know exactly how you feel. You've gotta steel yourself and find some serious patience. And whatever you do, don't go repeating those specific doctor's predictions to your wife. Every body works differently, and every cancer is its own beast. There aren't any set rules.
But don't lie to her about being sick. At the end of the day, she's going to hear things from other patients in the hospital anyway. It's better if she actually knows what's going on and what she's up against. Just make sure she knows this isn't the end of the line. Be there for her and fight this thing as a team. She needs your support more than anything else right now. You've gotta give it everything you've got so she feels like she can lean on you.

Megan Fowler78 said:My whole world just imploded three weeks ago. My wife went in for a routine checkup for what we thought was just a common cold, and they came back with a diagnosis of Small Cell Lung Cancer.
I'm terrified. I honestly can't wrap my head around this happening. Her doctor here gave us a 20% chance and maybe 18 months. I haven't told her the truth yet—I actually lied and told her there's an 80% chance she'll be cured. I'm scared if I tell her the real deal, it'll just break her right at the start of treatment, even though she’s a rock-solid, tough person. Maybe lying isn't the move, but I'm freaking out. What now? How am I supposed to act like everything's fine? How am I supposed to look at the person I love and actually feel optimistic about the future?...

I know exactly how you feel. That news hit me like a freight train four months ago when I found out my dad had that same diagnosis.
It's brutal. The shock just pins you down for a while, but eventually, you learn how to carry the weight of it.

My best advice? Move fast. Get started on the treatment immediately.
And then, like I tell everyone—you absolutely need alternatives. Load up on anything for immunity, antioxidants, vitamins... all the "miracle" stuff. (I've seen it work firsthand.)
Don't throw in the towel. It's a fight. It isn't easy and it isn't quick, but man, you will feel like you're on top of the world the second you see that first sign of improvement.

Just so you know, doctors predicted my dad wouldn't make it past last Christmas (meaning he only had two months left). 😳 Now, I barely recognize him. He's improved physically, too—he's back on his feet. He's sharper, eating like a horse. He actually has color in his face again...
I know it doesn't happen overnight, but it's moving in the right direction. We're going on month four of the fight!

So, listen, from day one, stay positive. Don't let her see the fear. Be upbeat and encouraging when you're with her.
Every body reacts differently. I think we've all heard those stories where they say, "They wrote him off, and look at him now..."

GOOD LUCK. I'm here if you need anything at all.

P.S. Does she have any metastasis anywhere?

slyseal28 said:If you or someone close to you is currently battling colorectal cancer, please pay close attention if Avastin is ever mentioned as a treatment option. Here’s the kicker: Avastin isn't classified as one of those high-cost outpatient drugs that insurance struggles to cover; instead, it's on the hospital's formulary. In theory, that means the hospital picks up the tab. However, we're seeing cases where patients are being denied this specific medication simply because the hospital's internal budget is stretched too thin.

The administration tells patients the drug is "unavailable"... which is a complete crock. It’s not that the medicine doesn't exist; it's that the hospital can't justify the line item in their budget right now. If you've been told you can't access Avastin due to "shortages," please reach out.

My dad is fighting colorectal cancer with liver metastases and hasn't been given Avastin—is there anything we can actually do about this?

cosmicviper76 said:My dad is being treated for colon cancer with liver metastases, but he hasn't been prescribed Avastin. Is there anything we can actually do about this?

Look, just send over his medical records so we can figure out why they didn't go with Avastin. Try to scan everything you have and shoot it over to my email.

Lisa White54 said:We’ve started running tests to figure out what we're actually dealing with. Hopefully, my husband is as healthy as the doctors seem to think he is. He’s seeing an ENT today based on what the PET CT showed, and he has a urologist appointment next week. We’re just taking this one step at a time, tackling issues as they arise through our primary care physician. Thank God we have a new doctor at the clinic who actually wants to help. As for the bone scan, I wouldn't push for it right now, just in case the X-ray results eventually demand a skeletal scintigraphy instead. Once these initial tests are done, we’ll see if a scan is necessary depending on what the specialists suggest.

Lisa White54, I'm keeping my fingers crossed that everything goes smoothly. Let's hope for the best, though I suppose you won't truly be at peace until the test results confirm it.
I do have one question. How is your husband managing all these procedures given the pain he's in?
My father still has a mountain of testing ahead of him before we get a final diagnosis, and honestly, who knows how long this will drag on; the pain in his hands and spine is becoming quite exhausting for him. He takes some painkillers, but the waiting itself is draining. We’re heading to the Mayo Clinic next week for a colonoscopy, and they’ve already warned us that we might be sitting there for up to ten hours before they even call his name.
I truly don't know how he's going to endure it.

Thanks so much for the reply. That website you mentioned is great—really informative and easy to navigate.

If I'm understanding this correctly, the PET CT can only be done at the Medikol clinic over on Vinogradski Street.
And if an oncologist makes the recommendation, does Medicare cover it? Meaning, is it free for the patient?
I'm worried our oncologist won't even give us a referral. He barely says two words when we're there, no matter how hard I try to get information out of him... Is it possible to go without a referral, and if so, what would the cost be?

Regarding the Avastin you mentioned, no one has ever brought that drug up to my mother...

darkmaker70 said:You mention Avastin, but nobody ever even brought that up to my mother...

They really ought to have a much deeper understanding of the pathology... If you're comfortable, feel free to send over the medical records; we can run them by the specialists we consult for second opinions. Once we have the full picture, we'll be able to determine whether Avastin is actually necessary in this case or not...

We’ve been using Durogestic patches for the pain. He started out on the 25mg ones, but we had to bump him up to 50mg recently. On top of that, he’s popping Tramal capsules. We swap the Durogestic patch every third day. He’s also got a whole arsenal—Voltaren gel, Neofen Forte, Voltaren pills, you name it... just whatever works depending on how bad the pain hits. I try my best to hold off on increasing the Durogestic dose for as long as I possibly can.
He doesn't fight the doctors when they say he needs tests; he knows they're necessary. The bronchoscopy is the one he's dreading, though. It’s the most invasive and uncomfortable one, so he’s pretty anxious about it.
As for colonoscopies, I actually had to go in for one a few years back because of some issues I was having. I went to Dr. Bates Clinic in Washington, D.C.—it was a private thing, so I paid $400 at the time. They did the whole procedure under general anesthesia, so it was totally painless. Honestly, I can't recommend them enough!
I'm keeping my fingers crossed that your dad pulls through everything.

darkmaker70 said:Thanks a ton for the reply. That website you mentioned is actually great—super helpful and easy to navigate.

So, if I'm getting this right, you can only get a PET CT done at the Medikol facility over on Vinogradski Street.
And if an oncologist signs off on it, Medicare covers it, so it ends up being free for the patient?
My big worry is that our oncologist isn't even going to give us a referral. Honestly, the guy barely says two words when we're in the room, no matter how much I try to squeeze information out of him... is there a way to just go without a referral, and if so, what’s the damage?

Also, you brought up Avastin, but nobody has ever even mentioned that drug to my mom...

Look, if you manage to snag that referral, and you've got a waiver or some decent supplemental health insurance, you won't have to pay a dime for the PET CT.