Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:Look, a lack of strength is entirely possible, especially since she's undergone surgery. If she starts losing weight too quickly, her doctor might suggest nutritional supplements like Prosure or Ensure. To bolster her immune system during this stage, she could even take Nature's Bounty—miracles do happen—but for other things like Emergen-C or propolis, you should probably check with a pharmacist, especially given that constipation is becoming an issue.

She's barely eating anything at all. She constantly complains about feeling overly full, as if she's going to burst, and mentions her stomach feels hard. The doctors haven't even performed a physical exam; they just prescribed Dulcolax. She claims she’s excessively bloated, which is what has us worried.

Hi Dan, I have a question... My sister-in-law had bladder cancer surgery two years ago, and they warned her it would likely return. In the meantime, she’s been relying on various herbal teas and avoiding follow-up screenings. A few days ago, she was hospitalized because the cancer came back and has spread through most of her abdomen. Her legs are swollen, her bladder is blocked, there's blood in her urine, and she's dealing with sepsis and fluid in her lungs. To put it bluntly, everything is failing internally. They've now sent her home to pass away without any heavy pain medication. A nurse visits after her shift, but she won't be able to provide much long-term care... I'm wondering if this is standard practice? Is there anything we can actually do to make her more comfortable, or should we look for a different doctor here in San Diego? 🤷 This is all just my layman's way of explaining things, so please excuse the long post. I hope I made sense, thanks 😉

feraldrifter6 said:I have a question... my sister-in-law had bladder cancer surgery two years ago, and they told her it would almost certainly come back. In the meantime, she was just drinking various herbal teas and refusing to go for follow-up screenings. Well, three days ago she ended up in the hospital. The cancer returned and spread through basically her entire abdomen. Her legs are swollen, her bladder is blocked, she’s urinating blood, she has sepsis, fluid in her lungs—to put it bluntly, her body is essentially falling apart. They sent her home to die without any heavy-duty pain medication. My sister is working, so she can help out after work, but she won't be able to provide constant care. I want to know if this is standard practice and if there is anything we can do to make her more comfortable, maybe find a specific doctor (we are in San Diego). 🤷 This is all written from a layman's perspective, so sorry for the long post, I hope you guys understand what I mean. Thanks. 😉

The first hospice facility in the US has opened in San Diego; you should ask about palliative care, because they likely have mobile teams that can come to the house.
Also, a primary care physician is obligated to direct you on what steps to take next. An anesthesiologist can also prescribe titrated doses of pain medication. Unfortunately, it does happen that hospitals discharge patients without providing instructions or meds, but it’s also true that people sometimes leave on their own without asking questions, not realizing that nobody is going to step in and take care of them unless they advocate for themselves.

Look, you need to get to the hospital and demand actual, concrete help. Don't just take whatever they throw at you. You should also be asking for a home visit from a primary care physician. That’s literally what they are there for—to handle these kinds of crises. Have them coordinate with a visiting nurse to perform an enema if possible, because frankly, it really should be an option.
In my experience with situations like this, the only thing that ever truly worked for my mom was using liquid glycerin administered rectally.

Angela Wright said:Look, I guess feeling weak is expected since she just had surgery. If she starts dropping weight too fast, her doctor might suggest some nutritional shakes like Prosure or Ensure. For an immune boost during recovery, maybe even Nature's Bounty could help—it works wonders. As for other stuff like Emergen-C or propolis, she should probably just ask at a pharmacy, especially since constipation is already becoming an issue.

Prosure and Ensure are basically on par with a Herbalife shake. They aren't bad, they're nutritious, and I suppose the big plus is that they're covered by Medicare. But honestly? You really need high-dose vitamins to actually recover. The vitamin levels in those shakes are pretty pathetic, if you ask me.

nimblepanther14 said:Yeah, that used to drive me crazy. I can't tell you how many suggestions I've received on what to buy for my sister. Beta glucan, apricot kernels, MMS, vitamin B17, maple syrup and baking soda, some random South American plant powder, soursop... I had no idea there was such a massive market for this stuff, honestly. I don't even know what to make of it all...
On the other hand, it's pretty obvious people just want to help and pass along whatever they've heard somewhere...
Let them be. You decide for yourself what works and what doesn't...

High doses of vitamins, minerals, and omega-3 fatty acids are probably the best way to support the body. Beta glucan provides an extra boost to the immune system, and soursop is arguably the best plant for cancer therapy—studies suggest it selectively targets cancer cells. Hundreds of people here have already tried soursop, and the results and experiences have been very positive. In any case, everyone I know who used soursop alongside chemotherapy dealt with significantly fewer side effects from the treatment. Here are three good articles about soursop:

link removed from page mentioning homeopathy
link removed from page mentioning homeopathy

Angela Wright said:The first hospice in the US just opened in San Diego. Ask about palliative care services; they likely have mobile teams available too.
Also, a primary care physician is obligated to guide you on the next steps. An anesthesiologist can similarly prescribe titrated doses for pain management. Unfortunately, sometimes patients are discharged without proper instructions or medication, but it also happens that people leave on their own without asking questions, not realizing that no one will step in unless they take the initiative themselves...

Thanks. We heard about that facility in our area and will look into it... but if it's too expensive, we'll have to pass. Our family doctor won't be able to make a home visit until Tuesday, and she hasn't even spoken with an anesthesiologist yet. Other doctors just nodded along, saying they've done everything they can and there's nothing left to do. Now my sister has to dig through every possible avenue just to figure out what kind of help is actually available. She had to call 911 last night just to get my mother-in-law some Voltaren injections, and the responder basically told her that this is just how the healthcare system works and not to expect much help...🤷

amberridge21 said:Comparing Prosure or Ensure to an Herbalife shake is a stretch; they aren't bad, they're nutritious, and the big plus is that they're free for patients. But if you actually want to recover, you need high-dose vitamins. The amounts in those shakes are honestly a joke.

You can't just lump Herbalife in the same category as Prosure or Ensure. There's a massive difference here: those two are medical-grade products backed by actual clinical studies. Their nutritional profiles are precisely engineered and dosed specifically to serve as a complete meal replacement. They exist for one critical purpose—to aid recovery and provide a necessary defense against wasting away until a patient is strong enough to eat solid food again.

feraldrifter6 said:Thanks. We heard about that hospice facility near San Diego and we'll look into it... but if it’s overpriced, we're out. My primary care doctor isn't coming by for a home visit until Tuesday, she hasn't even spoken to an anesthesiologist yet, and the other doctors just nodded their heads and basically said they've done all they can and there's nothing left to do. Now my sister is stuck digging through every possible avenue just to figure out what kind of help is actually available. She had to call 911 last night to get her mother-in-law some Voltaren injections, and the dispatcher basically told her that's just how our healthcare system works and not to expect much help. 🤷

That hospice center is state-run, so Medicare should be picking up the tab for the palliative care costs. Hospices are meant for patients whom doctors have determined are in their final stages of life, but for a situation like yours, there are home health services specifically designed to visit patients and manage the entire palliative regimen—everything from pain management to specialized care. Your primary doctor can, and absolutely should, submit a formal recommendation for home care. In cases like this, the patient is entitled to a visiting nurse every single day for up to 45 minutes. Demand it!

Angela Wright said:This hospice facility is state-run, so Medicare should be covering the palliative care costs. Hospices typically admit patients whom doctors believe have very little time left. However, for someone in your situation, there are home health services available to visit the patient and manage the entire palliative regimen—everything from pain management and so on. For home care, a primary care physician can and should submit a referral. In cases like this, patients are entitled to a visiting nurse every day for up to 45 minutes. You need to demand that...

They told her she might only have a few days, maybe even months🤷 and the doctor actually told my sister they’re letting her pass away at home🤷 She isn't eating or drinking, she can't move, and she isn't sleeping at night... (both my sister and she are widows, so they have no one else to help) Thank you, we just have to wait for the doctor now and see what she says...

Don't just sit there waiting for a doctor, for God's sake—you can't treat a cold like this with patience! She’s being kept in inhumane conditions, starving and dehydrated while she's in agony! Call 911 right now and demand hospitalization! In the meantime, get on the phone with a hospice provider to figure out placement or at least arrange for home health care, because she needs to be on a constant IV drip.
This is an emergency that requires immediate action, because if you don't act now, she'll be dead within two days after suffering through a brutal death rattle.

Angela Wright said:Don't just wait on a doctor, for God's sake—you can't treat a cold like this! She's stuck in inhumane conditions, hungry, dehydrated, and in pain! Call 911 and demand hospitalization immediately! In the meantime, call a hospice service to look into placement or at least get home care, because she needs to be on constant IV fluids.
This needs to be handled right now, or she could pass away in agony within two days at most!

We called the doctor, but she said she couldn't make it until Tuesday. My sister is staying overnight to help as much as possible, handling everything from bathing to changing diapers. The EMTs said she was dehydrated, but they didn't actually do anything about it.🤷 They won't admit her to the hospital because they claim there's nothing more they can do for her, which is why I came here to ask if this is normal. (Even though it clearly isn't, you still ask: why? The answer is always: "That's just how it is, our healthcare system is in a coma.") Not even the emergency responders would show up until my sister started yelling at them...🤷

feraldrifter6 said:We called the doctor, and she said she could swing by on Tuesday. My sister is staying over at her place right now, doing everything she can—everything from washing up to changing diapers. The ER staff told us she’s dehydrated, but they didn't lift a finger to help 🤷. Now, the hospital doesn't even want to admit her because they claim there's nothing more they can do for her. That's why I'm asking here: is this actually normal? (Though obviously, it isn't. But you ask anyway, and you just get the same old response: "Well, that's just how it is, our healthcare system is basically in a coma." Even the paramedics wouldn't show up until my sister started screaming her head off at them 🤷.

This time, tell her to call 911 because those calls are recorded. She needs an IV drip tonight, not Tuesday. She should threaten to file a formal complaint with Medicare, the local news, and the papers. She needs a doctor, period. When the paramedics arrive, if they refuse to help, she needs to demand the name of the specific doctor she’ll be reporting for denying medical care. It would be best if you guys could somehow drive her to the hospital yourselves, because once she's through those doors, it's much harder for them to kick her out. Honestly, if I were in this situation, I’d be the type of person to cause a massive scene to get things done.

Angela Wright said:Next time, she should just call 911 because those calls are recorded. She needs an IV drip tonight... seriously. She ought to threaten to report them to Medicare, the local news, and the papers. She really needs a doctor. If the paramedics show up and refuse to help, she should demand the name of the doctor responsible for denying medical care. It would be best if someone could just drive her to the hospital herself, since it's hard to get kicked out once you're there. Personally, I’m the type of person who would cause a scene in a situation like this...

We all know how things work here... it's clear. I won't even go into how they handled things when her husband and father-in-law passed away... 🤷 Because of her own situation, she already reached out to the Mayor, and they promised to follow up. But I think she'll end up calling the news soon. Her husband held a high-ranking government position, though that doesn't change much. I just wanted to say she's starting to lose faith in the system and getting help... but she's going to call 911 now, so we'll see. Honestly, I feel just as helpless wanting to help her without any way to do it... but thank you so much.

amberridge21 said:High doses of vitamins, minerals, and omega-3 fatty acids—those really seem to bolster the system. Then there’s beta-glucan for an extra immune boost, and Soursop is arguably one of the best plants for cancer therapy; studies suggest it selectively targets cancer cells. Honestly, hundreds of people here in the States have used Soursop, and the feedback has been quite positive. At any rate, everyone I know who used Soursop alongside chemotherapy reported significantly fewer side effects from the treatment itself. Here are a few decent articles regarding Soursop—actually, three of them, if you're interested:

link removed due to mention of homeopathy
link removed due to mention of homeopathy

That's all well and good, but I think you missed my entire point.
The whole reason I listed all those supplements was to highlight how people are being bombarded by endless products—frankly, at this stage, I couldn't care less about what actually works and what doesn't. 😢
My only real grievance is that a person can't find any semblance of objective information about these preparations anywhere; instead, they're just left at the mercy of various vendors selling nothing but hope.

It gave me that distinct sensation you get in those old movies where they set up stalls at a county fair to sell "miracle" tonics to unsuspecting folks.

Greetings.

I am 55 years old, currently based in Boston.

I am posting again because I have just received my pathology report for the third time.

Previously, through both a lymph node biopsy in the groin and the surgical removal of a node from that same area, doctors determined this was the result of a malignancy. Following that, I underwent a battery of tests—CT scans, MRIs, and PET/CTs. None of them have successfully identified the primary site of the adenocarcinoma. The only findings have been the lymph nodes in the inguinal region (deep within the abdomen) acting as a consequence of the cancer. Numerous ultrasounds, tumor markers, and other diagnostics have yielded nothing. Consequently, a medical board has now decided that I should undergo chemotherapy.

I have an appointment with the oncologist this Thursday to discuss the specifics of the treatment plan. My question is: Should I agree to chemotherapy if the primary tumor remains unknown? To what extent can chemotherapy actually help me, and how much damage might it do? I would appreciate any insight so I can make an informed decision regarding my treatment.

You didn't actually specify what the pathology report says.
I already told you, trying to treat an occult tumor is like feeling your way through a pitch-black room and just hoping you don't trip over something. It’s basically a medical board guessing at chemo based on gut feelings and certain indicators to assume what they're dealing with. Personally, if it were me or anyone I care about, I wouldn't touch a single thing until I had hunted down at least one more independent, competent second opinion. I would do absolutely everything in my power to get that clarity before moving forward.

Kevin Bishop10 said:Hey there.
I'm coming at this from Boston, 55 years old.
I'm checking back in after getting my third pathology report.
Back when they did a biopsy on a lymph node in my groin, and then later removed a whole node from that same area, they determined it was all stemming from a malignancy. Since then, I’ve gone through the ringer with CT, MRI, and PET/CT scans. Not a single one of those showed where the primary adenocarcinoma actually started. All they found were the lymph nodes in the inguinal region (deep in the abdomen) which are a result of the cancer. A ton of ultrasounds, tumor markers, and whatnot haven't turned up anything conclusive either. Now, the medical board has decided I need to start chemotherapy.

I have an consultation scheduled with the oncologist this Thursday to talk through the therapy options. Should I go ahead with chemo if nobody can pinpoint the primary tumor site? How much will the treatment actually help versus how much damage might it do to me? I’d really appreciate some insight so I can figure out my next move.

Look, an oncologist is a specialist who has spent a massive amount of time studying how to tackle these kinds of malignancies. If a full medical board is recommending chemo, you're looking at a consensus from a group of highly trained professionals. When a bunch of experts are all on the same page like that, it carries a lot of weight.
You can always push back a little—that’s basically why you’re having this meeting in the first place—by asking, "What are the EXACT other options available?" if you aren't ready to jump straight into the recommended chemo route.
Doctors don't just throw chemo at people randomly; they choose it very carefully. There is a very slim chance—almost zero, really—that they’d suggest chemo if there was a better or less harsh alternative sitting right there on the table.
It’s true that chemo comes with its own set of risks, but you’ve got to weigh the potential benefits against the certain harm that could happen if you decide to walk away from treatment entirely.
Since the primary site hasn't been caught (even after all those high-tech scans), chemo seems to be the only effective "weapon" we have left in the fight at this stage.
Just stay strong. If this many specialists are in agreement, there’s a pretty good chance they know what they’re doing and you should listen to them. 😉
Keep us posted on how the chat with the oncologist goes and what you end up deciding...

Angela Wright said:You didn't specify exactly what the pathology report states.
I already mentioned that treating an occult tumor is basically like feeling your way around a dark room and shooting blindly; essentially, a tumor board decides on chemo based on experience and certain indications, making educated guesses about what they're actually dealing with. Personally, if this were happening to me or anyone I care about, I wouldn't commit to anything until I’ve secured at least one more independent, competent opinion. In that regard, I would do everything in my power.

Thanks for the quick reply.

To summarize the pathology findings: out of a conglomerate of lymph nodes, "6 show signs of chronic lymphadenitis and reactive sinus histiocytosis without evidence of metastatic deposits from malignant epithelial neoplasia."

The issue, however, lies with the remaining 3 nodes, which are entirely "infiltrated by malignant epithelial cells."

A previous biopsy was positive for CK and CK7, but negative for PSA and S-100. This latest one shows CKHMW (+/-) and CK 20 (-).

According to the pathologist, all of this "suggests a malignant epithelial neoplasm—an adenocarcinoma possibly of transitional epithelium origin, though a malignant neoplasm of mesothelial origin (mesothelioma) cannot be ruled out)."

It even suggests a "detailed patient examination." What kind of examination are we talking about, considering I’ve already done a CT, MRI, PET/CT, and so on?

These "diagnoses" aren't particularly clear to me, other than the fact that they don't even know where the primary tumor site is located.

WHAT SHOULD I DO? Who in Washington, D.C. should I turn to who can thoroughly review all these results—someone with enough expertise that I could accept their opinion without hesitation? How do I reach a specialist like that as quickly as possible?

velvetmoose9 said:One simply needs courage. When such a vast consensus of experts aligns on a matter, there is a high probability they are correct and should be heeded. 😉
Do feel free to update us on how the consultation with the oncologist went and what you ultimately decide...

I appreciate the thorough response. I will check back in on Thursday, following my appointment with the oncologist.