Support resources for families dealing with cancer and other serious illnesses

My heart goes out to everyone who has lost someone. It’s truly heartbreaking when a battle isn't won. My own mother is still fighting, though we've hit some difficult hurdles. Her oncologist hasn't moved forward with chemotherapy because her heart isn't strong enough to handle it yet. There’s a silver lining somewhere, I suppose... but honestly, we've been struggling with a persistent issue following her mastectomy and lymph node removal. Her arm is swelling again. I know lymphedema is common after those types of surgeries, but the frustrating part is that none of her doctors seem to be taking it seriously. I’m reaching out here to see if anyone has advice on how we should proceed. As part of her treatment, she’s taking John Smith to help manage fluid retention from when she was hospitalized with pulmonary edema. While the swelling in her arm subsided back then, I can see it starting to swell and redden once more. Her primary care physician hasn't offered much guidance, so we feel like we're navigating this entirely on our own. She's hesitant to take the John Smith because it causes her blood pressure to drop, which creates a real struggle since her heart medication tends to push her pressure up—it's a constant balancing act. Last year, she was referred for specialized therapies and hand massages in a Small Town, USA, but unfortunately, we didn't see much improvement. Does anyone have any suggestions?

Linda Baker51 said:My heart goes out to everyone grieving right now. It’s devastating to lose such a fight. My mom is still hanging in there, though. Her oncologist isn't prescribing chemo because her heart just isn't strong enough to handle it. There's a silver lining somewhere... but honestly, we've been stuck dealing with a complication from her mastectomy and lymph node removal for a while now. Her arm keeps swelling up; I know that's common after surgery, but the issue is that none of her doctors are actually doing anything about it. I'm looking for advice—what should we do? Mom is taking John Smith (among other things) to help flush out fluid since she was hospitalized for pulmonary edema. Her arm went down then, but now it's swelling and turning red again. Her GP won't listen, so we're left to figure it out ourselves. She hates taking the John Smith because it drops her blood pressure, but she has to take heart meds that raise it, so she's constantly feeling off. Last year, they prescribed some therapies back in Small Town, USA, including arm massages, but it didn't really make much of a difference. Any advice?

Find a massage therapist who specializes in lymphatic drainage and have them come by for a few days to get that fluid moving properly.
And you need to stay on top of the doctor—insist they take action, because they absolutely can.

Linda Baker51 said:My heart goes out to everyone grieving. It’s devastating to lose this battle. My mom is still fighting, though. Her oncologist won't prescribe chemo because her heart is just too weak right now. A silver lining, I guess? But honestly, we've been stuck dealing with a massive issue caused by her mastectomy and lymph node removal. Her arm is swelling up. I know lymphedema is common after surgery, but the problem is that none of her doctors seem to care. Does anyone have advice on what we should do? She’s taking John Smith (among other things) to help with fluid retention since she was hospitalized for pulmonary edema. The swelling went down then, but now it’s back, and the arm is turning red. Her GP is basically ignoring us, so we're on our own. She hates taking the John Smith because it drops her blood pressure, but she has to take heart meds that raise it, so she's constantly feeling off. Last year, they prescribed some therapies in Small Town, USA, including arm massages, but they didn't really do much. Any ideas?

My mom’s situation was just as brutal because the metastases spread through her entire axilla and neck, making drainage from the arm incredibly difficult. After a certain round of therapy, her arm improved significantly, and whenever she hit that swelling and redness phase, she’d use cold compresses religiously.
Back when she was still somewhat mobile, she went to her scheduled treatments and even paid for private lymphatic drainage, but nothing worked. Every time she finished chemo, the swelling would subside, only to crawl right back a few days later. It’s happening again now—not quite as bad, but her operated breast is swollen. Unfortunately, as her mobility decreases, the drainage gets worse... when she could move, she exercised her arm regularly, but she just can't manage that anymore.
Wishing you all so much strength.

Linda Baker51 said:My heart goes out to everyone mourning right now. It’s devastating to see such a battle lost. My own mother is still fighting, but it’s an uphill climb. Her oncologist won't even prescribe chemo because her heart just isn't strong enough to handle it. There's a silver lining somewhere, I suppose... but honestly, we've been dragging our feet through this ongoing issue caused by her mastectomy and lymph node removal. Basically, her arm is swelling up. I know lymphedema is common after those surgeries, but the real kicker is that none of her doctors seem to care! They aren't reacting at all, so I'm begging for some advice—what on earth should we do? Mom is taking John Smith (among other things) to help flush out fluid since she was hospitalized previously for pulmonary edema. Her arm had calmed down then, but now I can see it swelling and turning red again. Her primary care physician is completely ignoring it, so we're left to figure this out ourselves. She hates taking the John Smith because it tanks her blood pressure, but then she has to take her heart meds which push it back up, leaving her feeling terrible. Last year, they prescribed some therapies in Small Town, USA and suggested arm massages, but let me tell you, it didn't do squat. Does anyone have any actual advice?

You really need to sit down and write out every single one of your mother's diagnoses and all her current medications. You also need to list every test result if she’s had them—things like her TTE, creatinine, urea, urate, glucose, ALT, AST, GGT, Potassium, Sodium, CK, electrolytes, CRP, chest X-rays, and EKG.
And don't forget to note specific symptoms: for instance, how many pillows she uses to sleep on, whether there's visible edema in her limbs, any chest pains, shortness of breath, and so on.

vividsailor7 said:It would be best to list all of Mom's diagnoses and her current medications, along with any recent test results—specifically things like her echocardiogram, creatinine, urea, uric acid, glucose, liver enzymes (ALT, AST, GGT), electrolytes like potassium and sodium, CK, CRP, chest X-rays, or an EKG.
Also, mention specific symptoms, such as whether she needs extra pillows to sleep, if there’s any swelling in her limbs, chest discomfort, shortness of breath, and so on.

Thanks for the advice. I’ll put together a full list of her medical history and tests as soon as I have a moment.

She hasn't shown any swelling or chest pains. There is some shortness of breath, but compared to how she was before being admitted to the hospital, it seems quite minimal.

Hi everyone.

How exactly do they detect lung metastases? Which test is considered the "gold standard"? What should we be doing here?

Because honestly—we’ve been spinning our wheels for months now—and it feels like we're right back at square one, repeating tests we’ve already done.

My mom had breast cancer surgery over two years ago—radical mastectomy, chemo, radiation, the whole works.
Regular checkups—everything seemed fine.
Her lung scans looked clear, but a family friend who happens to be a doctor noticed some irregularity in the imaging and urged us to get more testing.
In the meantime, at his suggestion, she was tested for tuberculosis—since she had this killer cough for a while, though she didn't have a fever, so her primary care doctor just suggested tea, honey, and lemon. The blood work suggests TB, but the sputum sample doesn't confirm it.
The PET/CT—they keep assuring us there is no substitute for this when it comes to finding metastatic clusters; they say it's highly accurate and we'll finally have answers.
The conclusion—there's increased glucose metabolism which could point toward secondary growths, but it could also be a dozen other things; they even mentioned a possible scar. Basically, the report is just a massive pile of question marks—no definitive confirmation.
Tumor markers, mammogram, biopsy—everything comes back normal. The oncologist keeps repeating that the markers aren't spiking, so we're essentially stuck.
So, next step: bronchoscopy. They say that's the most reliable way—take a sample and then we'll know for sure.
And once again... nothing. We're back to a conclusion full of question marks, and the oncologist is still insisting the markers look fine—WTF?
Basically, they can't prescribe further treatment because nothing is "black and white" yet. Okay, but what are we actually supposed to *do*???
It’s just a loop. My mom is going back for another PET/CT tomorrow!
Every single time, they convince us this will be the final word, and my mom is struggling so much mentally with this—she's just exhausted.

Thanks for any insight you can offer.

Lisa Ross81 said:Hey everyone!

How do they actually spot lung metastases? Which scan is considered the "gold standard"? What should we be doing next?

Any advice would be appreciated!

My mom’s lung metastases, along with some in the mediastinum, were caught on a PET/CT last fall. She went through chemo, but honestly, it didn't do a thing. Now she's stuck using an oxygen concentrator and struggling to breathe. Even with the oxygen, she can barely lie down and hasn't seen any relief after a few days. A recent lung CT confirmed the disease is progressing.
The doctors at the pulmonary clinic told us she doesn't need hospitalization yet because there isn't much fluid in her lungs. I was wondering if Linda Baker51 could maybe shoot me a private message? I'd love to know how you managed to improve your mother's condition so significantly. All we hear here is that this is just how the disease works and there's nothing more to be done.

Lisa Ross81, I'm guessing the oncologist won't start chemo without absolute confirmation. During her last checkup here in the States, her markers were sitting around 90.

Lisa Ross81, when it comes to TB, I don't care if there were no traces in the sputum; if it shows up in the bloodwork, there’s no debating it.

Regarding the precision of tools like a PET-CT, a huge part of that depends on who is actually reading the results. It’s happened more than once where our radiologists misread a PET-CT, to the point where scans had to be sent over to Denver just to get an accurate reading. You need actual experience here, because a PET scan will light up anywhere there was once significant inflammation or trauma. You have to know how to tell the difference between old scar tissue and something actually malignant.
I’d suggest getting an ultrasound. It’s well known that sometimes an ultrasound can pick up things that even these "high-precision" scans somehow miss.
I have no idea why my mom hasn't had an MRI with contrast yet. Honestly, I think that would clear up a lot of these questions.

Quite simply, just like the doctor said, you can't start any kind of treatment without clear indications that something is actually there. They cling to these markers that are notoriously unreliable, but the second there's any hint that something isn't right—regardless of what the markers say—they push for more testing, which is exactly what they did here. It’s honestly a miracle they’re even willing to send her for another PET scan; you can tell the doctor truly cares about this patient.
Look into that TB situation—consult with an infectious disease specialist or an ID doctor immediately. If there's an infection present, there's no time to waste; you have to start treatment right away, because starting oncology treatments while fighting an active infection can be fatal.

swiftgardener said:Last fall, my mom’s PET/CT scans showed multiple spots on her lungs along with some in the mediastinum. They put her on chemo, but it hasn't done a thing. Now she's relying on an oxygen concentrator and struggling to breathe; she can't even lie down flat, and honestly, we haven't seen much improvement since the oxygen started a few days ago. Her most recent lung CT confirmed that the disease is progressing.
The doctors at the lung clinic told us she doesn't need hospitalization because there isn't much fluid buildup, so I was wondering if Linda Baker51 could maybe give me a heads-up—even just through a private message—on how they managed to stabilize her mother's condition to make things easier. All we're getting from our team is that this is just how the disease moves and there's nothing left to do.

Lisa Ross81, I assume the oncologist doesn't want to start any more chemo without concrete confirmation, especially since her markers were sitting around 90 at the last check-up here in the States.

You really need to have that oxygen dosage titrated properly; get in touch with her pulmonologist immediately! Whatever you do, do not try to crank up the oxygen levels on your own. Make sure she uses a saline spray (like Ocean or a similar nasal mist) because the oxygen can actually burn her nasal passages. Is she taking Fursemid?

Lisa Ross81 said:Hi everyone!

How do you actually detect lung metastases? What kind of test is considered the "gold standard"? What should we even do next?

Because for months now, we’ve just been running in circles, and now we’re right back at square one, repeating tests we’ve already done.

My mom had breast cancer surgery over two years ago (radical mastectomy, chemo, radiation).
Regular checkups—everything looked fine.
The lung scans show nothing wrong, but a family friend who happens to be a doctor noticed an irregularity on the image and sent us for more testing.
In the meantime, at his suggestion, she also got tested for tuberculosis (since she had this killer cough for a while, though she didn't have a fever, so her primary care doctor just suggested tea, honey, and lemon). The blood work suggests TB, but the sputum sample doesn't confirm it.
Regarding the PET/CT—they keep insisting there is no better way to find metastatic clusters in the body, that it’s extremely accurate, and once we do it, we'll know everything.
The conclusion? Increased glucose metabolism, which could point toward secondary growths, but could also be a million other things; they even mentioned a possible scar. Basically, the report is just a massive pile of question marks; there is no definitive answer.
Tumor markers, mammograms, biopsies—everything comes back normal. The oncologist repeats the same thing: the markers aren't spiking, so we are staying put.
Then, "No, let's do a bronchoscopy; that's the most reliable method. We'll take a sample and then we'll finally know."
And guess what? We still know nothing. Once again, the conclusion is full of question marks, and the oncologist just repeats that the markers look fine—WTF?
Basically, they can't prescribe further treatment because nothing is "black and white" yet. OK, great, but what are we supposed to do???
So we are right back where we started. Mom is going in for *another* PET/CT tomorrow!
Every single time, they convince us this will be the final word, and it is taking such a psychological toll on my mother; she's just exhausted.

Thanks for any input!

A definitive diagnosis of TB is established by isolating Kochov bacteria from the sputum.

vividsailor7 said:A secure diagnosis for TBC is established by isolating Kochov bacteria from a sputum sample.

Oh, really?😲 Then how do you explain finding traces in the bloodstream? How is it even possible to detect it there?

Angela Wright said:Oh, really?😲 Then how do you explain the blood? How is it even possible for there to be traces of blood in there?

Sure, you can, but let's be real—the most reliable method, and what everyone actually uses, is a sputum sample.

Thanks to everyone for the responses!

Mom kept repeating that cough—just this hacking sound—over and over, but honestly, everything seemed fine each time.
Is there a specific timeframe when that kind of coughing is actually most effective? I’m asking because this happened a few months after the actual coughing stopped—and honestly, no matter how hard Mom tried—she could barely clear anything. She was drinking milk the day before and trying all sorts of other things, but it just felt like there wasn't any more "congestion" left to move.
Ugh, honestly—there was just so much misinformation being pushed about what they call "latent" tuberculosis. It’s exhausting. 🤷
She underwent a bronchoscopy at the infectious disease clinic—they were looking into potential chronic bronchitis—but they didn't end up keeping her there since the phlegm samples didn't show anything conclusive.
The pulmonologist and the infectious disease specialist have both washed their hands of this—they basically just sent us right back to the oncologist. And now, apparently, the oncologist thinks the other guy isn't exactly the brightest bulb in the box. I guess we're just stuck in this loop—it's pretty frustrating, honestly. 🤷 I'm forwarding the paperwork over to the medical board—their latest recommendation seems to be a follow-up PET-CT scan.

Angela Wright said:You really need to track her oxygen dosage—get a pulmonologist on the phone immediately! And please, whatever you do, don't just crank up the oxygen levels on your own. Make sure she’s using a saline spray (like Ocean) to keep her nasal passages moist, otherwise, the oxygen could actually burn her membranes. Is Mom taking Fursemid?

She’s been on Fursemid for about 10 days now. It’s leaving her mouth pretty dry, but she isn't losing too much fluid. Thanks for the tip about the saline spray...

swiftgardener said:She’s been on Fursemid for about 10 days now and her mouth is getting pretty dry from it, though she isn't bleeding much. Thanks for the tip regarding the physiological...

The main thing is ensuring she takes Kalinorm alongside it to prevent her electrolytes from crashing; otherwise, she could turn a nasty shade of yellow. As for the puncture, that’s really not the best move. Once you pierce the pleura, you're basically just creating a new pocket for more fluid to accumulate. It's better to delay that procedure as long as possible, and eventually, you just go with a permanent drain once the buildup becomes too heavy to manage.

hm... haven't seen a dedicated thread on this in the food section or here. figured this topic would be the best place for my questions

my mom had surgery for ovarian cancer two weeks ago
since there were metastases on the rectum, they had to repair a 2 cm lesion during removal. she was NPO—no food or water—for 4 days and 7 days respectively
bowels seem fine now. regular movements.

she got home yesterday. didn't get any written instructions or a specific diet list. when she asked the nurses on the ward, they just told her to stick to boiled foods, broths, and light meals.
on the other hand, her brothers' doctor said she should eat whatever she wants, specifically emphasizing berries.
while she was in the hospital, they wouldn't give her salad or fruit (except bananas).
chemo starts Monday (looks like she’ll be getting Taxol)

I'm looking for advice on what she can actually eat. anyone have first-hand experience or suggestions?
it feels like enough time has passed since the surgery that I'd like to cook more than just stews, soups, or boiled chicken—though I assume she still needs to stay light and avoid things that cause bloating for a bit.

fish—just boiled? ground beef? spinach? mushrooms? ...

yesterday she had zucchini soup, polenta with herbs, and cottage cheese.
today was yogurt with ground flaxseeds, chicken noodle soup, boiled chicken with veggies from the soup, and chicken risotto with carrots.
she also had a slice of apple cinnamon pie.
I'm doing several small meals throughout the day.

generally speaking, what did you guys cook (if you cooked anything)?
I love cooking. I do it all the time, so it's not an issue for me.

also interested in immune system supplements. a lot of friends suggested beta-glucan.
read in a few places that beet, carrot, apple, and lemon juice is recommended (supposedly good for the immune system).

Angela Wright said:The main thing is she keeps up her potassium so her electrolytes don't tank—that could turn ugly fast. As for the pleural tap? Honestly, that’s probably not the best move right now. Once you puncture the pleura, you risk creating more space for fluid to build up. It's better to wait as long as possible, and if it gets out of hand, they'll just go in with a drain.

She's taking potassium. When she was at the pulmonologist last week, they told her there wasn't enough fluid buildup to justify a tap. She hasn't slept well in a month, so she asked her primary care doctor for Tramadol and actually got it... she says it helps a tiny bit, but I'm worried about the side effects. Then again, I guess that's the least of our problems right now.

rowdyfox12, check this out: http://cancerhelp.cancerresearchuk.org/
It’s a solid resource that breaks everything down by tumor type and even dives into specific dietary approaches for each one.
Beta-glucan is a heavy hitter. As for all these supplements you see floating around, there isn't much oversight in the US; most just have to pass basic toxicity tests to hit the shelves. You absolutely need to run any supplement by an oncologist first to make sure you aren't triggering a contraindication. Don't go overboard—pick maybe three things and stick to them religiously.

Hi everyone

Unfortunately, I have to join you all on this thread..
My mom (70) was rushed to the Mayo Clinic back on July 12th.. she just couldn't stay
on her feet anymore. I’m currently in my third trimester (36 weeks), so I suspect my dad didn't want to overwhelm me with the truth right away...
Initially, they diagnosed her with a fractured hip and collarbone (both on the left side). I remember my dad mentioning she had a fall at home about a month prior. Aside from that, her lower leg was extremely swollen..
Today, we finally got the diagnosis: primary lung cancer (she was a smoker) with metastases in her bones and liver..😢 She’s supposedly being discharged tomorrow, though they say it’s inoperable... radiation is scheduled for August 2nd.
The doctors are saying she arrived too late.. and they aren't exactly optimistic.
She’s barely eating anything, and today she seems completely lost. The doctors mentioned she isn't even fully lucid anymore...
I’m honestly speechless. My dad is a total wreck. I'm trying to be there for him—but at the same time, the reality of it all is hitting me hard.
Lately, Mom has become "aggressive" toward him, blaming him for everything in her life.. Today, she just sits there in silence, staring at him. Dad says he can see the tears welling up in her eyes..
I’m trying to hold it together as best I can—but I haven't actually seen her because everyone, including the doctors, is advising me not to go.
I don't know the exact clinical stage or how they officially categorize her diagnosis since the doctor just used layman's terms when talking to my dad... something about a "galloping tumor," according to him..
What I really want to know is: is it actually possible for things to deteriorate this fast in just two weeks? (Up until now, neither Mom nor anyone else in our family knew she was sick; this is the first cancer we've dealt with). Can a diagnosis really crush someone's psyche and will to live that suddenly, causing these kinds of "aggressive" outbursts???
Looking back, she really has had these waves of "good" and "bad" days over the last two years, though the bad ones usually won out... She always refused to see a doctor because she felt she "knew best."
I just can't believe any of this is happening. What is going on here? Is there any hope left? Is there anything we can actually do?
It feels like they've already written her off; they're discharging her tomorrow, yet they've already scheduled her for radiation... I don't get it..
Oh, and there’s some kind of clear patch on the left side of her lung area—what would that be? My dad is so distraught he can't even process what questions to ask, and I'm stuck on strict bed rest...

My dear Linda Morales66, I am so incredibly sorry 😢
This didn't just pop up two weeks ago for Mom. The tumor had been there for a while, slowly progressing and spreading, and it wasn't until the metastases started causing real trouble that everything finally got a name. Sadly, I suspect we're looking at aggressive small cell lung cancer. When the disease has spread this far, the statistics are brutal, but statistics are just curves with two ends and a middle—nobody can pinpoint exactly where Mom sits on that line right now. She’s going to start treatment, take whatever odds she's given, and fight. There isn't any other option; you can't just crawl out of your own skin and escape reality. You need to be her rock. If she lashes out in anger or starts acting completely unlike herself, try to remember that it’s the illness talking, not her. You should go see her if that’s what your heart is telling you to do, talk things through, and get on the same page, but you have to pace yourself. As much as she is your mother—and I know she's the most important person in your world—right now, your child is the priority, and you have to think about that first. I'm certain that as your mother, she wants exactly that for you, so please don't make things harder on yourself by resisting it. Just try to carry this pregnancy through to the end in peace, and see if you can coordinate things so you can help Dad without being totally overwhelmed yourself.
Stay strong and hang in there.