Support resources for families dealing with cancer and other serious illnesses

We just got the diagnosis... 😢((leiomyosarcoma... we have a doctor in the family who took a look at the results... from what I've been reading online, things aren't looking great😢

slypuma said:We just got the diagnosis... 😢Leiomyosarcoma... we have a relative who’s a doctor, so he went over to take a look at the test results. Based on what I've been digging up online, things aren't looking great. 😢

Look, we’re talking about leiomyosarcoma here, which is its own beast entirely. This isn't your run-of-the-mill cancer; it's a sarcoma, a rare type of tumor where surgery is usually the gold standard for treatment. There's a good chance more operations will be on the horizon, and constant monitoring is going to be non-negotiable to catch any new growths the second they pop up so they can be wiped out immediately. If you're looking for the best hands in the business, you'd want to see Duke or Shante over at the Mayo Clinic—they are pretty much the top experts in this field.
Vertex Pharmaceuticals showed an excellent response against this tumor.
I know a woman who was diagnosed with esophageal cancer and had it surgically removed. It’s been five years now. Since then, she’s gone through rounds of Adriamycin chemo and a few other surgeries. She’s living an incredibly high-quality life, even though she’s been dealing with some dormant spots on her lungs for a while.

The surgery already removed the uterus and ovaries... we're down in Miami, so do you think they should head up to Washington, D.C.? We haven't received any official word yet, but we know this guy is definitely...

slypuma said:The uterus and ovaries have already been removed via surgery... we're down in Miami, do you really think they should head up to New York City? We don't have any official word yet, but we know this guy is...

You absolutely, positively need to get tissue samples sent back for review and redo the pathology in Washington, D.C.!
They might run into trouble because those doctors in St. Louis can be pretty full of themselves and will try to lecture you. I've seen them mess up cases involving rare tumors more than once. For you, Washington, D.C. is the number one option, period.

I'm honestly devastated. I have no clue how we're even supposed to break this to her... how do you even deliver news that terrible? ;(

slypuma said:I’m just devastated. I honestly don't know how we're supposed to break this to her... how can you even deliver news that horrible? ;(

Despair isn't going to fix anything. You need to tell her she has a sarcoma—be direct. Tell her it's rare, which is why she'll likely have to see a specialist in Washington, D.C., and that she'll undergo treatment and learn to manage it. Keep it brief and clinical. At the end of the day, nobody can offer anyone guarantees in this life. You have to take things as they come and deal with the situation as it evolves. Don't go using the word "cancer"; tell her it's a sarcoma. It is what it is, and you have to face it and fight, because there's no other option. Panicking, crying, and spiraling will only make everything go downhill faster. Save your energy, because I'm warning you now: expect a massive headache with bureaucracy. Since it's a rare tumor, the medications for rare diseases are incredibly expensive.

My dad just got discharged from the hospital after finishing radiation on his lymph nodes, where they thought they saw some potential spots.
A few days after his last session, he started feeling this pain in his left shoulder. Now, that ache is spreading from the shoulder all the way down to his chest—basically, the whole left side hurts, and he’s having trouble breathing sometimes. He says he feels like he's suffocating, like he just can't catch his breath. He’s already ended up in the ER twice, and both times they told him everything looks fine and there aren't any tumors where it hurts, but he's still in pain all along that side.
Does anyone have any idea what might be going on?

It’s most likely neuropathic pain.

slypuma-Thank God there’s such an incredible woman-Angela Wright-who started this thread and is out here looking out for you guys and everyone dealing with this.!!! Seriously, listen to her—she knows her stuff because she's lived through it. Washington, D.C. is basically the hub for oncology, especially the Mayo Clinic; they have some seriously top-tier doctors there. If you're in Miami and they aren't giving you the samples or tests you need, and you decide to come out here for a second opinion, you can just redo all the testing and bring the results with you. It’s going to be a long fight. There's also a group on Facebook called LIONS—it's for support, and most people there are amazing—but it's also packed with advice for every kind of tumor you can think of. People there comfort each other, give tips on what to expect after chemo or radiation, how to deal with nausea, and even where to track down specific meds. You guys need to get moving right now to help her recover! It’s honestly a blessing they didn't tell her anything yet. When it happened to my mom, the doctor just blurted it out—nothing soft, nothing gentle—just "you have cancer." My mom was absolutely devastated by the shock, and I honestly couldn't believe it was actually happening! God forbid anyone else has to go through that! Hang in there, people fight this every day. Those doctors aren't Gods—they have no idea how long someone can actually live. Best,

Thanks for all the support... We should hear from the doctor today with the actual details on the stage and what our treatment options look like. Mom has her regular checkup this Monday, and that’s when the doc will give us the news. We actually asked him not to be too blunt about everything—we just want to keep her spirits up and encourage her to keep fighting. She struggles with depression, so we're mostly worried about her losing heart.
Angela Wright, if you happen to know, how does Vertex Pharmaceuticals actually work? We read that it's an incredibly expensive therapy; any chance Medicare would cover it?

Hey everyone!
I haven't been around for long, but I'm back. That bastard hasn't finished me off just yet.🙂 Days turn into weeks, and it’s already been a year since I first found out about him. In the meantime, they removed the upper lobe of my left lung, and I went through adjuvant chemotherapy—the results were actually pretty solid. After that came the recovery phase, followed by some pleural effusion that they’re monitoring, though they aren't touching it because it's minimal. Then, about two months ago, I started getting this pain in my left femur. They rushed me in for imaging immediately, and sure enough, a shadow appeared. Naturally, that meant an immediate bone scan. The report says the leg itself is fine, but there’s some increased activity showing up in my first left rib. Nowhere else in the skeleton shows any pathological changes. Of course, I had a bit of a meltdown because I know how this works—I know the bastard is trying to make a comeback. But my doctor (who has never hidden anything from me, though she’s never been one to exaggerate or toss around wild prognoses either) says there’s no reason to panic right now. She mentioned she’s seen things like this before and we just have to watch it and see which way it goes. Along with the bone scan, my tumor markers came back normal, and my blood work looks so good you wouldn't even guess what I've been through. On that left side, I don't feel any pain or discomfort at all. I trust my doctor, but that little spot on the left rib still has me feeling uneasy.🙂 I've been catching up on a lot of posts while I was away, and honestly, my heart goes out to those who have lost loved ones, and much strength to those currently in the fight. I just wanted to say that during this past year, I haven't encountered a single instance of medical rudeness or misunderstanding. From the very beginning, I knew exactly where I stood and what my next steps needed to be. No one has ever even hinted at specific prognoses, like "you have this much time left." I actually asked the doctor who has been managing my care since day one once, and she told me she couldn't say anything for certain because she doesn't know my body well enough yet—and, as she puts it, she doesn't trust cancer, because some of them are just stubborn and cursed. So, that's all from me. Take care of yourselves, look after your loved ones, and don't you dare give up. Big hugs from Angela Wright.

So, we talked to the doctor. Since he realized what was going on right in the middle of the surgery, he made sure everything was cleaned out properly and took some extra samples. He said the main thing is that it hasn't spread anywhere; hopefully, it was encapsulated. We asked about Vertex Pharmaceuticals... he mentioned it’s a solid drug for targeting those types of growths, but she won't need it since everything came out clean. Anyway, she’s seeing him on Monday so he can walk her through everything and refer her to the oncologist... he actually thinks she might skip chemo entirely and just do some hormone therapy instead. It calmed me down a bit, whether that's rational or not, I don't know...
The results come in on Monday, then we send them off to Washington, D.C....

mistyjackal842, clear out your inbox again so I can actually send you a message!

jezic

I finally cleared out my inbox, so feel free to send me a private message now.

Hello,

My father has been diagnosed with lung cancer, though he hasn't received his definitive prognosis just yet. That little tumor, as I prefer to call it, is situated right next to a lymph node, which it is currently involving.

Since Dad needs to undergo another bronchoscopy, we are still in a bit of a waiting game regarding whether the doctors will recommend surgery or if they will opt for radiation and chemotherapy instead.

What I am truly looking to understand is how I might best support him in strengthening his immune system and overall resilience during this time.

Are you aware of any specific supplements, substances, or medications that could prove beneficial for someone in his position?

You’ve got plenty of info right here if you actually bother to look at the previous posts. Honestly, that propolis, the beet and carrot juice, and the beta-glucan are all solid, but don't go overboard with it. Just pick a few of those supplements and see what works for Dad without upsetting his stomach. Hoping for the best for him.

Hey there...
Finally showing up here. I haven't posted anything yet because I was trying—as hard as I could!—to just be patient and wait for the call from the hospital. Still nothing. Honestly, my nerves are shot at this point..
I went through everything at the Institute—the breast MRI, the ultrasound, even the biopsy under ultrasound. They kept all the results there; they're sending them over to the surgical department..
I signed up for the surgery two weeks ago, and the nurse told me I should expect a call within five to ten days.. Well, here we are. Every single day I'm jumping out of my skin every time the phone rings, but it's always nothing..
Tomorrow, I'm calling them myself to see if they’ve actually put me on the schedule for the surgery soon..
I just want this whole thing to get moving already. I want the surgery done so I finally know exactly what I'm fighting against..
I'm just so on edge, I don't even know what to tell you.. Everything is dragging on forever.. And obviously, this isn't exactly something I can just shrug off.

Hey Lisa White54, I know this waiting game is driving you absolutely insane. I'm pulling for you and really hope everything turns out okay.

Listen, ladies, stop sitting around waiting. Pick up the phone and start badgering them until you actually land an appointment. You’ve got to be as relentless as a debt collector!

So, they’re still out there on strike. That guy Babic from Des Moines seems to be calling all the shots—he was even featured on the news at noon today. I guess he's feeling pretty satisfied with himself again. It makes you wonder about all the other people who are out of work and just getting ignored. You could easily walk right into the unemployment office over in Washington, D.C. It feels like their main priority is just complaining about their paychecks and making as much noise as possible.

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