Support resources for families dealing with cancer and other serious illnesses

Nancy Lee said:I just absolutely loathe my dad's illness... Honestly, there are days where I'm so incredibly angry I feel like I could just scream my lungs out, just wailing for hours on end... and even then, it wouldn't be enough to get all this negativity out of my system... Ugh, I hate this disease so much, why does this even happen, what's the point of any of this???

I totally hear you... I've gone through every single one of those questions in my own head... There were times when I was so furious I’d actually start yelling at God, and let me tell you, it wasn't pretty to listen to because I’d be cursing Him out and just losing it completely. That happened back when my mom was sick. And honestly? I still find myself doing that today, even now that Mom is gone. He hasn't gotten back to me yet, but once he does, I'll definitely let you know...😉
..........all jokes aside, I don't know... I guess this is just how it has to be...

ruggedpuma47 said:Hey everyone! I've been away for a bit, just doing my thing... sending a special shout-out to Angela Wright and Amy Torres4🙂

hey mamajasna... honestly, seeing you pop up made my day 🙂 I haven't been around here in a while, so I totally missed that you had checked in. I see you're still being such a brave soul and staying positive as always... it really warms my heart to see that, so hang in there, sweetie... you've got this. :*
big hugs

Hey everyone. First time posting here, and I've got a question. My mom had surgery three months ago to remove a malignant tumor from her arm. The pathology report says they got it all out, but now she’s facing radiation and chemo. Since the tumor hit a nerve, they had to remove that too, so her arm's function is already pretty limited. She went in today to prep for her first radiation session, and they basically drew lines on her and explained how she has to lie still, then handed her a waiver to sign saying she accepts the risks. The doctor told her straight up that radiation could cause her arm to become immobile, which is why she needs to sign off on it. I've never heard anything like that before. Does anyone know if radiation can actually cause loss of movement? Is this common? And if it happens, is it permanent or can it be fixed? My mom is absolutely reeling after hearing this, especially since the doctor didn't offer any more details. If anyone knows anything, please let me know.
Best,

My old man went through cancer surgery and pulled through just fine, so if any of you are dealing with someone fighting that kind of battle, honestly, just being there for them through everything is the most important thing you can do. This might sound totally wild and completely unhinged, but my uncle told me this story once—back in the day, one of his buddies had some kind of tumor on his liver or stomach, I can't quite remember which, but anyway, the guy and his crew were out hiking one day when he gets bitten by a snake, and somehow, the tumor just vanishes. I'm serious, the whole medical team was losing their minds; they had to run the tests over and over again because they couldn't believe what they were seeing.

Chris Howard92 said:Hey everyone! This is my first time posting here and I have a question. My mom had surgery three months ago to remove a malignant tumor from her arm. The pathology report showed they got everything out, but now she still has to go through radiation and chemo. Since the tumor hit a nerve, they had to remove that nerve too, so her arm function is already limited. Today, she went in to prep for her first radiation session. They marked her up, explained how she’d need to lie still, and—among other things—had her sign a waiver saying she's undergoing radiation at her own risk. Her doctor told her that radiation could lead to permanent loss of movement in the arm, which is why she needs to sign it. I've never heard anything like this before, so I'm wondering if you guys know if radiation can actually cause immobility in an arm? Does that happen often, and if it does, is it permanent or reversible? My mom is absolutely devastated by this news; the doctor didn't offer any more details. If anyone knows anything, please let me know.
lp

What specific type of tumor is your mother dealing with?
Unfortunately, if the area being treated is close to vital nerves that control motor skills in the arm, damage is a real possibility. It's impossible to predict exactly what kind of damage or how extensive it might be, though they try to be as precise as possible. Some damage can be managed through rehab later on, but unfortunately, some of it may be permanent. At the end of the day, if that's the price for saving a life, there isn't much of a choice.😢

The tumor was a liposarcoma. They did the surgery just to try and save her arm, but she’s already losing mobility because the tumor was wrapped right around the nerve. What's the point of all this agony if radiation might just leave her with a useless limb anyway? 😢

Her life isn't even at risk since they got the whole thing out, and chemotherapy will handle any leftover cells or potential spread. I just don't get why they have to put her through this extra hell.

Chris Howard92 said:The diagnosis came back: liposarcoma. They went through with the surgery because they were trying to save his arm, but let's be real—he’s already losing grip on things because the tumor was wrapped right around the nerve. So what was the point of all that trauma? If radiation is just going to strip away whatever function he has left, you have to wonder why we even bothered with the struggle in the first place. 😢

Chris Howard92 said:Her life isn't even at risk anymore because they completely removed the tumor. Plus, the chemo is going to do its job and wipe out any potential metastases or lingering cancer cells where the tumor used to be. So, I honestly don't get why we're even dealing with this.

Look, sarcomas are incredibly tricky. They don't exactly play nice with chemo or radiation, and they have a nasty habit of spreading fast. When you're dealing with this kind of cancer, surgical removal is the most effective move whenever it's an option. In this specific case, it’s clear the doctors determined that given the grade of malignancy, they had to go through with the procedure to make sure any lingering cells were wiped out. It’s a heavy call, but honestly, losing function in an arm is a small price to pay when you're talking about saving a life.
Look, if you want my honest take on this whole situation, you’d be better off heading over to the hospital to get a second opinion from Dr. Shante. When it comes to rare tumors, he’s easily the most qualified specialist in the entire country.

Thanks for the reply. Honestly, I’m just incredibly frustrated. My mom has been through absolute hell from the moment they found that growth on her arm until now, when the tumor is finally out and she’s facing more treatment. Every time we think we’ve finally turned a corner, they hit us with some news that sends us right back to square one. It’s hard to stay positive or keep your head straight when the doctors haven't exactly been tactful about any of this. Thanks again for the input.

Just an update: my aunt had her pulmonology appointment. They repeated her chest X-ray too.

The pulmonologist is pretty sure it’s malignant and has spread. He’s pushing for a bronchoscopy, lung lesion biopsies, and a PET/CT scan. She’s convinced she’s perfectly fine and thinks they're just overreacting... she's undecided on which tests to take, though she's flatly refusing the bronchoscopy. Right now, she won't even consider our suggestion to get a second opinion in a Small town, USA with her sister Sandra. She thinks she should have just gone to the pharmacy for some cough syrup instead of wasting time at the doctor... but she hasn't completely ruled out further testing yet.

Anyway, here is her chest CT report (with contrast):

Standard protocol MSCT of the chest performed:

Several small mediastinal lymph nodes; the largest pretracheal node measures approximately 7 mm in short axis.

Within the lung parenchyma, along the bronchovascular bundle for the laterobasal segment of the right lower lobe, there is a lobulated consolidation. It shows visible spiculations extending toward the parenchyma and the visceral pleura, measuring roughly 33x17 mm on axial sections—this formation is suspicious for a primary process and requires further workup.

Multiple nodular changes are visible bilaterally in the lung parenchyma: the largest on the right is in the superior segment of the lower lobe at 9mm, and the largest on the left is in the posterobasal segment at 8mm.

The described nodular lesions are suspicious for secondary changes.
Pleuroparienchymal adhesive adhesions are located at the left base.
No pleural effusion.
Visualized bones show no evidence of lytic changes.

On sections through the upper abdomen, two cystic lesions are visible in segments II (8mm) and IV (6mm) of the liver parenchyma.

Maybe someone can give me a rough idea: if the radiologist is right, what are the chances that chemotherapy (assuming she agrees to the tests and we find out what we're dealing with) would do more harm than good? The pulmonologist says surgery and radiation aren't options... She isn't really in pain and is fully mobile for now.

If she had actually started an adequate treatment plan right away, we could probably be slowing this thing down. Instead, we’re looking at a situation where things will likely spiral out of control very quickly—metastases will start setting in, and her quality of life is going to tank. I honestly don't know how lucid she is when it comes to making her own medical decisions, but if she understands the reality of the situation, you'll just have to respect her choice. It’s going to be incredibly tough on you, especially once the complications hit. I have an aunt in my extended family dealing with the exact same thing—invasive breast cancer—who flat-out refused to accept the diagnosis or go through with surgery. After a year of stalling, her condition worsened, so she finally agreed to the procedure, but she’s still refusing radiation. Now, six months later, she's in agony; her arm is swelling up, and the pain is so bad she can't even hold it in the position required for treatment. There's some issue with the artery supplying blood to the arm, and the whole limb is basically 😢. We’re all being treated like we're to blame because we didn't "explain" it well enough to her 🙄 (mind you, my cousin is a doctor, my sister-in-law is a physician, and I’m well-educated myself... 😉). It becomes this endless litany of excuses; we try to explain the facts, she seems to get it, and then she hears some random person claim the doctors botched it, or she watches some cable news segment about alternative medicine and conspiracies, and everything goes out the window again. She’s just waiting for some half-baked validation from someone else telling her she doesn't need treatment. That's just how it goes with the elderly.

Hey everyone...

So, my mom had surgery about three weeks ago—they ended up doing a full mastectomy. The tumor itself was about 2 cm, and out of the 10 lymph nodes they removed, only one showed signs of involvement, but the doctors mentioned the tumor is fast-growing. I guess I'm just sitting here wondering what "fast-growing" actually implies when it comes to her long-term prognosis...

Linda Ortiz49 said:Hi everyone...

My mom had surgery three weeks ago—a full mastectomy. The tumor was 2 cm, and out of the 10 lymph nodes removed, only one showed involvement, but they labeled the tumor as fast-growing. I'm trying to wrap my head around what "fast-growing" actually implies for her long-term prognosis...

It means it spreads quickly if you don't get a grip on it. My aunt deals with that exact type, and look at her: she’s gone nearly two years without any treatment beyond the initial surgery, and the issues are strictly limited to the lymph nodes in her armpit. This isn't a one-size-fits-all situation; it's highly individual. The cells might look aggressive under a microscope, but ultimately, it's the immune system that dictates how things play out in the body.

I’ve been back here for about a week now... just taking things one day at a time, I suppose—life carries on, slowly but surely...

I really want to thank you all for the support...

Angela Wright said:So, I guess it can really take off quickly if you don't get a handle on it right away. My aunt actually has that exact same type, and man, it’s crazy—she’s been nearly two years without any kind of ongoing therapy besides her surgery, and yet the only thing it’s hitting is the lymph nodes in her armpit. It just goes to show how incredibly individual everyone's situation is. Maybe those cells look one way under a microscope slide, but honestly, I truly believe it's the immune system that's doing all the heavy lifting to keep things from spiraling out of control inside the body.

Thank you so much...

Angela Wright said:If she actually started proper treatment now, things might slow down. Otherwise, complications and metastasis are coming fast, and quality of life will tank. I'm not sure how lucid she really is when it comes to making her own calls, but if she knows the reality, you'll have to respect her choice. It’s going to be brutal, especially once the symptoms hit. I have an aunt in my extended family dealing with the exact same thing—invasive breast cancer. She refused to accept the diagnosis or go in for surgery. A year later, she's finally agreeing to the surgery but still refusing radiation. Six months after that, everything goes south. It gets incredibly painful, her arm swells up, and she can't even hold it in the right position for treatment because of the pain. It's likely an issue with the artery supplying blood to the arm, and generally 😢 Now we're all to blame because we didn't "explain it well enough" 🙄 (my cousin is a doctor, my sister-in-law is a doctor, and I'm educated myself... 😉 ). It's a whole ritual. We explain it, she listens, then she hears some random person say the doctors messed up, or she watches some cable news segment about alternative medicine and conspiracies, and it all goes out the window again. She's just waiting for some third-party validation to tell her she doesn't need it. That's just how it is with the elderly.

Sorry you're dealing with a similar situation. My take? The doctors might end up doing more harm than the disease itself, especially since she's completely in denial right now. Plus, there are too many horror stories from people nearby who suffered through chemo, and maybe not enough examples showing what happens when you do nothing.

We might end up with the same outcome. We'll see... 😢

Frank Johnson4 said:My dad had cancer and underwent a successful surgery for it. If any of you are dealing with that kind of illness, the most important thing you can do is just offer support in every way possible.

I’ll weigh in here too, since I’m actually the one dealing with this nasty cancer. Support is fine, but sometimes it really gets under my skin. What drives me crazy is how everyone suddenly thinks they’re a doctor. I am constantly bombarded with these mindless pieces of advice, and it just winds me up until my stomach starts aching from the stress.
Don't go handing out medical advice to patients unless you're actually asked for it. If you absolutely feel the need to say something because you're about to burst, then fine—but don't be pushy about it and don't defend your "expert" opinion like some door-to-door Tupperware salesman.

wearytrucker22 said:Let me weigh in here, since I’m the one actually dealing with nasty cancer. Having support isn't inherently bad, though sometimes it drives me absolutely insane. What really gets under my skin is how everyone suddenly thinks they're a world-class physician. I am constantly bombarded with mindless advice; it winds me up so much that my stomach actually starts aching from the stress.
Stop handing out unsolicited medical advice to patients unless you've actually been asked. If you're just bursting at the seams and *have* to say something, fine—but don't be pushy about it, and for heaven's sake, don't defend your little "tips" like some aggressive Tupperware salesperson.

I'm with you 100%. Any advice, opinion, or info shared should be brief, clear, and backed by logic. Whether that information is actually used is entirely up to the patient—period. There should be zero pressure and zero attacks on a person's integrity. That said, patients also have to acknowledge that weighing the right dose or finding the perfect timing can be genuinely overwhelming. The road to hell is paved with good intentions, after all.
As for having a doctor's follow-up, I think that kind of oversight is a necessary evil in our healthcare system. When you're sitting there with your doctor, the window of time is so short that your brain often can't process everything or find the breath to ask the vital questions. That's why you need to pick one or two articulate, assertive people to act as your logistical backbone. It's a basic necessity, and frankly, a luxury many people would kill for.

Angela Wright said:Perhaps it would be wise to schedule a chest CT and definitely a bone scan—I find it quite odd that he didn't recommend one, though an oncologist likely will... If there is a target on the bones, radiation should begin immediately. Otherwise, for everything else, chemo remains the standard. Now comes a recovery period of perhaps two to three weeks before treatment actually starts. I am truly sorry to hear about this situation. 😢

The recovery period has only lasted five days. There aren't any specific pains, but she is struggling because she hasn't had a bowel movement in those five days. The lack of strength is particularly bothersome; since I know that is also a symptom of a tumor, I wonder if this weakness could be due to her gallbladder surgery just a few days before Christmas, which required her to stick to a bile diet until this operation. Additionally, she was diagnosed with diverticula in her intestines before Christmas, requiring that specific diet as well. She is very disciplined when following a diet; she lost 10 kg between the intestinal imaging and this surgery. This weakness has been present since the gallbladder surgery through to now. Her grip strength remains the same—quite strong—but lifting her arms or legs above her head has become difficult.
Could anyone suggest what I might give her to boost her immune system once she is discharged from the hospital?
When I asked the doctor if a CT scan was necessary, he claimed there was no need because he saw the condition of things during the surgery and that this provides the best view. But how can he be certain about the rest of the body—the back, the lungs, etc.? How can he know the state of those organs without a CT or other diagnostic tools?

Look, feeling weak is totally expected since she just went through surgery. If she starts dropping weight too fast, her doctor might suggest some nutritional shakes like Ensure. To help bolster her immune system during this recovery phase, she could even try a Vitamin supplement—it really does wonders—or things like an Immune supplement or Propolis. Just check with the pharmacist about those, especially since we don't want to mess with her constipation any more than necessary.

wearytrucker22 said:I figured I’d weigh in here—after all, I’m the one actually dealing with this nasty cancer. Support is fine and all, but sometimes it really gets under my skin. What truly grates on me is how everyone suddenly fancies themselves a medical expert. I am constantly bombarded with these mindless suggestions; it gets so frustrating that I end up with actual stomach pains from the stress.
Please, just don't offer unsolicited advice to patients unless someone specifically asks for it. If you absolutely feel the need to speak up just to keep from bursting, go ahead—but please don't be pushy or try to defend your "remedies" like some aggressive Tupperware salesperson.

Yeah, I know that feeling all too well. It’s been a constant headache for me—the sheer volume of advice I get regarding what I should buy for my sister. Glucan, apricot kernels, MMS, Vitamin B17, maple syrup mixed with baking soda, some random South American plant powder, Soursop... honestly, I had no idea there was such a massive market for this kind of stuff, and I'm still processing it all...
On the flip side, I suppose it's clear people genuinely want to help by passing along whatever they've heard somewhere...
Let them talk; at the end of the day, you're the one who decides what works and what doesn't.