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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 16 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
brisklynx62 brisklynx62 Member
17 messages
joined Jul 2012
#3861 ·
There were studies...
Some things have been known for thousands of years, while others were discovered in the 19th or 20th centuries. There were actual studies involving Nobel Prize winners and even nominees, but I guess they just got pushed aside by powerful lobbies with different interests.

Look, I'm not some conspiracy theorist—that's pretty slippery ground—but it seems pretty certain that big pharma companies aren't going to be happy about a treatment that’s available to everyone for free. They can't patent it, so they can't sell it for a massive markup.

There were studies and research papers out there about using baking soda for treatment, too, but maybe it didn't take off because it was suppressed.

There was this German doctor who treated a Monégasque princess and even John Wayne; he worked with Laetrile, but most of that is banned here in the US. In Mexico, though, it isn't. At a clinic like the Oasis of Hope, they actually get incredible results with certain types of cancer using intravenous Laetrile therapies.

It’s kind of like how R. Simpson gets great results using cannabis oil (not just the seeds, but the leaves)... and it's been common knowledge for millennia that the cannabis plant itself is packed with good nutrients and benefits.
But even that, despite showing good results, gets banned.

Why do you think that is?

I guess it's hard to patent a plant. Especially when the recipe for making the oil is common knowledge. Big corporations don't see a profit in that, so they just label these things as "quackery" or something and shut them down.

It's not all black and white, and I really don't think these massive companies are innocent in all of this.

I mean, you see people here constantly bashing "alternative" stuff like herbs and plants, but then on the flip side, they'll brag about how a herbal-based cough syrup works wonders and recommend it to everyone.
Why is that? Just because it has a "label" on it? It's like they believe it's fine if it's branded, but zero credit for anything else.
It's funny, really.

You just can't blindly trust the pharmaceutical industry. I mean, it feels like there's hardly a drug out there that doesn't have side effects or act like a bit of a poison itself.
Don't you think there are drugs on the market where so much money was poured into development that they couldn't afford to scrap them? So they release them even if they aren't the best, or if the clinical trials weren't exactly stellar.

Do you remember what Johnson & Johnson used to deal with, if I recall correctly? They released drugs that actually caused deaths, directly linked to the medication... and then everything was covered up, and the company had to totally pivot its core business because of it.
Same thing with GSK and the like.

There's just too much money moving through this industry for these giant companies to let something accessible and practically free exist.

Isn't it weird that statistics show over 2.5 billion people dealing with tumors today? That means every third person—or maybe even more—is fighting cancer or tumors.
Do you have any idea how much money the pharma companies make off all of this? It sounds harsh, but that's just the reality.
I doubt it's unrelated.

I have personal experience with this... and I know other people who do, too.
Maybe I can't prove it without my own lab and clinical trials, but my mother, who uses alternative methods, has lived over a year longer than the doctors' forecasts and statistics predicted. You can't prove it's not related to her treatment, either.

Personally, I'm always for combining science with alternative approaches.

But you can't be one-sided and demand studies from journals that are basically controlled by the pharma companies...
while at the same time, there are all these drugs on the market with horrific side effects that can kill you, and people just claim everything is perfectly fine.
brisklynx62 brisklynx62 Member
17 messages
joined Jul 2012
#3862 ·
Angela Wright said:Unfortunately, every year about 16,000 Americans find out too late. I really hope that besides just focusing on medical research and pouring money into treatments, we start putting way more into prevention and actually educating people. That’s where the real success lies, I think. Just if every smoker decided to quit and actually stuck with it, annual cases would probably drop by a quarter. And don't even get me started on what would happen if people stopped gorging on processed meats, started taking more Omega-3s, stayed active, and dealt with obesity—not to mention all the sugar we shove into our bodies constantly, whether we realize it or not.

I'm with you on this..

Diet and lifestyle are everything, both when it comes to prevention and actual treatment..
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3863 ·
brisklynx62 said:There were studies...
Some things have been known for thousands of years, others were discovered in the 19th century or the 20th... there were studies, involving Nobel Prize winners and even nominees, and yet they were suppressed by powerful lobbies with slightly different interests...

I asked you to provide specific cases.
In my "treatise," I explicitly outlined what a study should actually look like and the criteria it needs to meet. Something that is "known" for thousands of years doesn't hold water in science without evidence gathered under specific, established protocols. And those rules aren't just some arbitrary whim; they exist for very substantial and valid reasons.
I'm not some conspiracy theorist, and I know this is all pretty slippery ground; but it's also a certainty that major pharmaceutical companies won't look kindly upon a drug that is available to everyone for free, or anything they can't patent and sell at a premium...

I agree with you there—you could certainly point to medical cannabis as an example—but believe me, when it comes to cancer, which is such a complex disease at the cellular level of the human body, that kind of logic simply cannot apply.
There were studies and research and texts about treating with sodium bicarbonate, but it didn't take off because it was suppressed...

The "studies" you're referring to are specifically the product of a confused mind—a doctor who isn't even a molecular biologist, has lost touch with everything he ever studied, and basically just wants to make a quick buck. He bases his theory on this insane idea that all types of cancer are caused by fungal infections. There are people who bought into his story and ended up dead because they were being "treated" with intravenous baking soda. Currently, in Italy, criminal proceedings are being held against him due to those deaths, and he's been struck from the medical registry.
It’s fascinating how people are more inclined to trust someone with a record like that rather than someone who sticks to clinical protocols and whose work is backed by thousands of hours of research, not just from them, but from countless other scientists.
A German doctor who treated a Monegasque princess and John Wayne worked with Laetrile, but it's largely banned in the US; whereas, for instance, in Mexico it isn't, and there at the Oasis clinic, they achieve extraordinary results with several types of cancer using treatments like intravenous Laetrile.

I can't verify who was treated or how, nor can I see the clinical picture before or after, but there are facts described in this text: The American Cancer Society takes a very hard line on Laetrile, and honestly, their stance is pretty straightforward: they don't support it. If you look at their breakdown, they classify Laetrile as an unproven alternative treatment that hasn't shown any actual clinical benefit in fighting cancer. The core of the issue is that while people have been touting this stuff for years, the scientific community—specifically the major research institutions here in the States—hasn't found any evidence that it actually works. In fact, instead of helping, the biggest risk is often the toxicity itself. Because Laetrile contains cyanide, using it can lead to serious side effects, which kind of defeats the whole purpose of trying to get healthy. Essentially, the medical establishment views it as a dangerous distraction from treatments that have actually passed rigorous testing. They aren't just being stubborn; they're looking at the data, and the data says the risks far outweigh any perceived rewards. I want to draw your attention specifically to the section under the "What is the evidence?" subheading.
The studies have been conducted, and the results are clear: they didn't show any effectiveness.

It’s just like how R. Simpson is seeing fantastic results using hemp oil—and I’m not talking about that cheap stuff made from seeds, but actual leaf oil. It's been common knowledge for thousands of years that the hemp plant itself is absolutely packed with nutrients and incredible benefits.
Even when it yields great results, they still go ahead and ban it.

Tell me why?

Trying to patent a plant is a losing battle; it’s even harder when the recipe for extracting its oil is common knowledge. Big Pharma doesn't see a way to squeeze a massive profit out of it, so they just slap a label like "quackery" on it and push for it to be banned.

It’s never just black and white, and let's be real—those massive corporations aren't exactly innocent in all of this either.

When it comes to cannabis, I’m right there with you. There are massive lobbies out there that have zero interest in letting people swap out high-priced pharmaceuticals for a simple plant you can grow in a pot on your patio—especially when those drugs they’ve dumped millions into don't even work any better. We are looking at an all-out war here between the scientific community and corporate greed.

It’s funny to me how some people here are so quick to bash anything they label as "alternative"—you know, the whole "it's just weeds and herbs" crowd—yet they'll turn around and rave about some herbal cough syrup, claiming it's a miracle worker and recommending it to everyone they meet. Pick a lane, honestly.
Why? Just because it’s "labeled" that way? People will cling to a label like a lifeline if they believe it makes them feel okay about something, yet they won't give a single damn about anything else.
Funny...

Look, the issue here is strictly your own failure to distinguish and actually grasp what the word "alternative" means. I already broke down the difference in one of my recent posts. We're talking about herbs, plants, and those cough syrups you can just pick up at any local pharmacy. We aren't talking about "alternative" medicine here; we're talking about complementary supplements that actually have the data to back them up. There are peer-reviewed papers and clinical studies out there—and if you can't find a full study, you can at least find evidence regarding their non-toxicity. The term "alternative" is usually just a polite way of labeling anything pseudoscientific that lacks any clear, proven efficacy through randomized controlled trials. Once something actually holds up under scrutiny, it stops being "alternative" or "pseudo"—it simply becomes science. I'm not sure if there's even any point in me rambling about the broad concept of science and why it matters in the first place.

You can't just blindly trust Big Pharma. It’s almost like there isn't a single medication out there that doesn't come with a laundry list of side effects or act as a sort of slow-acting poison that does more harm than good.

The pharmaceutical industry is essentially just a vehicle that encapsulates the work of scientists. That researcher doesn't necessarily have to be an employee of Big Pharma; they could be working in some independent lab, much like our own Dr. Gić at a research institute. Because of that, it’s honestly pretty stupid to talk about having "faith" in the pharma industry. They are simply a group of people with massive capital looking to turn a profit. There isn't any fundamental difference between them and a private equity firm moving in to buy out and renovate a shipyard. You have to view them through that lens—as entities that need to be pressured through government institutions and legislation to ensure they cooperate whenever human interests clearly outweigh their bottom line.
Do you honestly believe there are drugs out there where companies sink billions into development, only to scrap them at the finish line? It seems more likely that they push products to market even when they aren't the best options, especially if the clinical trial data was a bit shaky or underwhelming. Why would they walk away from that kind of investment?

It’s hard to imagine anyone actually manufacturing and launching a product without proof that it could turn a decent profit—unless, of course, the data is being cooked. Unfortunately, cheating and stealing are baked into human nature, but trying to pull those kinds of stunts over the long haul is getting much harder to pull off these days.

Do you remember what Johnson & Johnson used to be all about? If I’m not mistaken—and I’m pretty sure we’re talking about that specific company—they were deep into pharmaceutical manufacturing. They put drugs on the market that ended up killing people, quite literally, because of the medication itself. After all that, they tried everything in their power to sweep it under the rug, which ultimately forced them to completely pivot their entire core business model just to deal with the fallout.
What happened with GSK and everything else?

There is far too much money circulating in this entire industry. It’s wild to think that these massive corporations would ever allow something that is practically right under our noses—something that's essentially free—to be widely available.

I have no clue which specific cases you're hinting at. There's been everything under the sun—all sorts of medical complications and messy backstories involved.

Isn't it wild when you look at the stats? We’re talking about over 2.5 billion people globally dealing with tumors today. It basically means every third person out there—or maybe even more—is fighting some kind of cancer or tumor. It’s staggering.
Do you have any idea just how much money pharmaceutical companies are raking in from all of this? It sounds harsh, I know... but let's be real. It's the truth.
Even if it seems totally unrelated, I’m certain it isn't.

That’s true, but it’s also an undeniable fact that the global population has exploded in just the last twenty years. We are overpopulated, overcrowded, and under constant, mounting pressure—whether that stress is artificially induced or not doesn't actually change the core of the debate between science and alternative treatments.
I’ve seen this firsthand, both through my own lived experience and by watching what others I know have gone through.
I might not be able to provide hard proof—not without running my own lab and conducting clinical trials—that my mother is still here today because of her alternative treatment. She’s already outlived every single prognosis and statistic they threw at us by more than a year. But then again, you can't prove there isn't a direct connection between the two, either.

Statistics work based on a bell curve—you have two ends and a middle. Thyroid cancer isn't some freak occurrence either; nobody can sit here and guarantee you won't end up on that right-hand tail. Sure, that segment might be smaller than the median, but it’s far from negligible. Talking about it like it doesn't matter is just plain foolish. Every individual carries their own set of odds. Science provides the statistics, the medications, the monitoring systems, and the established protocols. If someone prefers to vanish into the fog of alternative medicine and pseudoscience, that’s their call. It’s a choice.

I’ve always been a firm believer in bridging the gap between hard science and alternative treatments.

I am strictly and exclusively about the science. Maybe I’m just stubborn because of my academic background, but I can’t help how I’m wired—I live and breathe cause-and-effect reasoning and the whole "experiment-to-proven-solution" pipeline. I am deeply convinced that anything backed by credible scientific studies will eventually break through, no matter how much the formal establishment tries to squeeze it out or suppress it, once someone finally finds a way to bring it into clinical practice. That’s exactly why cannabis is already being used for medical purposes in so many different countries.
But you can't just be one-sided and demand studies from journals that are essentially controlled by Big Pharma...
while simultaneously acting like it's perfectly fine that there are countless drugs on the market with side effects so brutal they can actually kill you.
🙄
I’m sorry, but what exactly is the basis for your claim that a journal like Nature or a database like PubMed is under the thumb of the pharmaceutical industry? We are talking about strictly independent scientific journals and platforms where researchers—usually people with incredibly high moral and ethical standards—publish their work long before they ever even pitch their findings to a pharma giant.
Look, you need to start realizing there are three players in this game: the patients, the scientists/doctors, and the pharmaceutical industry. Everyone has their own interests, and they all have to operate on a shared platform for the whole system to function. These global platforms exist, and they establish their own independent oversight systems. One example is the European EPPOSI
When it comes to medication, especially for severe conditions, it’s a constant balancing act between benefit and risk. It’s that simple. And unlike those "alternative" pseudo-scientific approaches, this process happens under controlled conditions, with precise dosages, and carries full accountability.
Edit: Mods, please forgive the OT regarding alternative medicine and let me keep this post up; it is genuinely vital for people to understand these dynamics so they don't fall into delusions or misunderstandings. Thanks.
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#3864 ·
nimblepanther14 said:Aside from the ultrasound, I haven't had any other tests done yet.
So, what's the deal? Are they going to run more tests on me, or am I heading straight into surgery?

The doctor in charge will be the one to walk you through the details.
But make no mistake—surgery is definitely necessary here.
Nicholas Myers Nicholas Myers Active Member
163 messages
joined Jan 2012
#3865 ·
I’d like to ask that we stop discussing alternative methods here.

Because of this specific discussion, the Health section guidelines have been revised. Please pay close attention:
Dear forum members,

We are updating and clarifying the rule regarding discussions about alternative treatments (anything that falls outside of mainstream medicine):
Quote:
Termination states:
8. The Health subforum is strictly tied to mainstream (conventional) science-based medicine. Imposing alternative viewpoints or treatment methods is not permitted. Within these rules, "alternative" refers to any substance or method that lacks support from official medical science—meaning they are viewed as either harmful or ineffective. For those topics, please use the Alternative Treatment subforum.
The rule is being modified and expanded. Read it carefully; violating it will result in sanctions.

In the Health and Pediatric Health sections, it is strictly prohibited to directly or indirectly testify in a positive light (sharing personal experiences such as, "I'm just sharing what worked for me, I'm not imposing it on others"), to solicit positive testimonials ("I just want to know if this ever helped anyone?"), or to push/advocate for:

a) Any form of "treatment" that does not fall under medicine and which the medical community considers life-threatening or dangerous (for instance, posting about MMS drops, colloidal silver, "Vitamin B17," or other toxins is forbidden), regardless of whether an individual believes these methods helped them;

b) Any form of "treatment" falling outside of mainstream medicine—excluding herbal preparations, vitamins, minerals, and dietary supplements (this means homeopathy, bioenergy, biorezonance, etc., are off-limits), regardless of perceived personal benefits;

c) Directly or indirectly advising others to abandon a therapy prescribed by doctors following standard professional protocols.

Discussing herbal preparations, vitamins, minerals, and supplements is allowed, provided they are not life-threatening toxins and provided the posts do not suggest acting contrary to a doctor's professional medical advice.
To be clear: moving forward, I will be issuing warnings or bans for posts that fall under points a, b, or c. If anyone wants to test that, be my guest.
nimblepanther14 nimblepanther14 Newcomer
5 messages
joined Mar 2010
#3866 ·
vividsailor7 said:The attending physician will explain all of that to you.
Surgery is definitely necessary.

Yeah—well, I actually saw him today... and he was wonderful at explaining everything. All the options, the possibilities, the risks, those "what-if" scenarios... honestly, credit where credit is due.
So, surgery. Both tumors in a single procedure.
Now, there is something I neglected to ask while I was sitting there...
1. What are the odds that the Warthin tumor might be a byproduct of the follicular one? Or are they just two entirely independent things happening at once?
2. If the follicular tumor turns out to be malignant, what does that look like in practice? The doctor mentioned it spreads toward the neck and can be handled with radioactive iodine, adding that it’s "okay." Was he just saying that so I wouldn't spiral into a panic?
And then there's this thought—if thyroid hormones can migrate through the lymphatic system or the bloodstream, why wouldn't the follicular tumor cells do the exact same thing and latch onto something else somewhere else? ...uh... I'm not entirely sure I want the answer to that... though, actually... yes... I suppose I do.
nimblepanther14 nimblepanther14 Newcomer
5 messages
joined Mar 2010
#3867 ·
Maria Fisher46 said:I’d appreciate it if we could move away from discussing alternative options here.

Oh, my apologies if I stepped over any lines... that certainly wasn't my intention. I was simply hoping someone from the "mainstream" medical side could weigh in on what might actually be helpful regarding "alternative" routes—or, more importantly, what might be outright dangerous...
Especially in these circumstances where doctors hesitate to recommend a certain therapy—not because they lack compassion, mind you, but because they worry my sister simply won't be able to tolerate it.

And yes... she was transferred to the hospital in Long Resa today... everything feels ---- I can't quite bring myself to write it, but I think you all understand what I mean. 😢
Kevin Bishop10 Kevin Bishop10 Member
43 messages
joined Apr 2016
#3868 ·
Greetings.

My apologies if I am disrupting your established "protocol," but I am quite unaccustomed to navigating internet forums, so I am unsure of the proper way to format a post or pose a question.

I am writing from Sarajevo, and while I have read most of the discussions here, I have yet to find an answer to the specific issue weighing on my mind. Therefore, I ask for your insight regarding the following:

Is there such a thing as a "broad-spectrum" therapy (such as pills, chemo, radiation, etc.) for cancer of unknown primary origin?

To provide some context: after carrying an enlarged lymph node in my groin for about a year and a half, I finally consulted a physician. A biopsy confirmed it is an adenocarcinoma. Despite extensive testing—tumor markers, abdominal and lung CT scans, abdominal MRI, colonoscopy, PET-CT, ultrasound, and so on—the primary "nest" remains elusive. The PET-CT only revealed two lymph nodes in the retroperitoneum resulting from this malignancy. Those nodes have been surgically removed, and I am currently awaiting the pathology report before returning to the oncology board.

Is there a standard course of treatment for this kind of situation, or must I wait for the primary tumor to actually "surface" before any treatment can be prescribed? For instance, can chemotherapy be administered if the site of the primary tumor is still unidentified? Is chemotherapy always tailored to a specific tumor type, or does a "broad-spectrum" chemotherapy exist?

Thank you in advance, a resident of Sarajevo (55).
ironnomad23 ironnomad23 Newcomer
2 messages
joined Feb 2013
#3869 ·
Me again... this time with a "real" problem:
After my 10th radiation session (breast and lymph nodes), I caught some kind of virus. Spent a few days dealing with drooling, sneezing, and puking up all the vitamin C and supplements I was taking. That part passed, but now I’ve got this intense throat pain; I can barely even swallow tea. My blood work looks fine, but the radiology team says it’s most likely just radiation side effects. Has anyone else dealt with this? And any advice on how to not starve to death?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3870 ·
Kevin Bishop10, unfortunately, there’s no such thing as a one-size-fits-all chemotherapy. A doctor can only try to make an educated guess based on certain parameters, essentially flying blind when they prescribe a specific therapy. 😢
restlessowl3 restlessowl3 Member
28 messages
joined Feb 2014
#3871 ·
Hi everyone... I have a few questions regarding radiation for brain tumors. My mom has already gone through two surgeries, and her latest MRI isn't looking great. Honestly, it feels like there’s no point in putting her through a third surgery. She’s heading to see Dr. Radic for a consultation in a couple of days... if they decide on radiation, how often would she have to go in, and what kind of side effects should we be bracing for?
Kevin Bishop10 Kevin Bishop10 Member
43 messages
joined Apr 2016
#3872 ·
Angela Wright said:Kevin Bishop10, unfortunately, there is no such thing as a one-size-fits-all chemotherapy. A doctor can only attempt to estimate what they might be dealing with based on certain parameters before essentially flying blind with a prescribed therapy. 😢

Thanks for the response. I suppose my only option left is to sit around and wait for the tumor to reach "full bloom"—maybe by springtime?—and then finally react. I can only hope the doctors notice it in time and manage to step in before things get too far along.

In any case, I plan on sticking around this forum. You all have truly impressed me with how much you understand one another and the way you step up to help out.

Wishing everyone plenty of luck and good health!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3873 ·
Kevin Bishop10 said:Thanks for the reply. I guess my only choice is to sit tight and wait for the tumor to come into "full bloom" (maybe by springtime?) before I actually do something. I just hope the doctors catch it in time and react quickly...

Either way, I'll be sticking around this forum. You all have truly impressed me with how much you understand and help one another...

Wishing everyone lots of luck and good health!

Honestly, that is not a smart move at all. Primary tumors can be microscopic, yet they can still trigger massive metastases. This needs more investigation or immediate treatment; letting metastases run wild is a recipe for disaster.
My advice? If things don't clear up in two or three weeks, stop wasting time and go get a second opinion—whether that's somewhere else in the States or even abroad. There are clinics in our neck of the woods that deal with occult carcinomas far more often than our local doctors do, and they likely have superior diagnostic tools.

Go see a dermatologist and have them give you a thorough exam. I've seen plenty of cases where these issues turned out to be melanoma.

In any case, I think once you get those pathology results back, your doctor will have a better idea of what's happening, and you'll probably get a treatment plan started.

Did they perform a gastroscopy or check your testicles? You can check your own testicles manually. If you feel any lumps or anything else out of the ordinary, make sure to point it out to the doctor. It wouldn't hurt to get an ultrasound, too; things don't always have to be palpable to be worth checking.
What kind of markers did they test?
Kevin Bishop10 Kevin Bishop10 Member
43 messages
joined Apr 2016
#3874 ·
Angela Wright, thank you for the response.

I truly admire your strength and your willingness to help by reading and writing such exhaustive replies.

I have visited two dermatologists, and both concluded there were no changes to my skin. Just to be safe, they removed three moles and sent them off for pathology. There was something suspicious—poorly differentiated—but they were removed in their entirety. Perhaps it was just a false alarm; who knows? Regardless, it hasn't been proven that those moles contained melanoma.

I had an extensive discussion with an oncologist specializing in the digestive tract. I answered all his inquiries with negatives, so he requested only a colonoscopy, which came back completely clear. Consequently, they concluded the tumor is not in that area.

By the way, the initial pathology report suggested "metastases from an epithelial adenocarcinoma tumor." I am aware that a PET-CT has its limitations, but the only things showing up as "active" on that scan were two lymph nodes in the retroperitoneum, which were subsequently removed while we wait for their pathology results.

With the urologist, I insisted several times on a testicular exam and a color Doppler ultrasound, but I was told that at 55 years old, I shouldn't be having these kinds of issues!? Through self-examination, I cannot find any irregularities.

Unfortunately, I am not in a financial position to travel to neighboring countries to seek a second opinion. My insurance covered the PET-CT, and in Sarajevo, there is only one oncology center. Therefore, I am essentially "stuck" receiving treatment from them. On another note, are there high-quality, expert, reliable, and experienced oncologists for poorly differentiated tumors in Chicago, or perhaps in Ljubljana? Any recommendations?

All that remains is to wait for the pathology result and see what the oncology board decides. As soon as I know something, I will check back in. Perhaps I can help someone else facing similar problems.

Thank you for the help and suggestions. I am fully aware that I cannot afford to waste time and that treatment needs to begin as soon as possible. The question is, what exactly am I treating? All this time, I have been haunted by one thought: I waited a year and a half for a lymph node to "disappear on its own"; what if I hadn't consulted a surgeon? Would only that lymph node still be enlarged, or would the tumor have appeared? I will never know!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3875 ·
Kevin Bishop10 said:Angela Wright, thanks for the reply.

I really admire your strength and how much you want to help—taking the time to write out such exhaustive responses.

I’ve seen two different dermatologists now, and both concluded there were no changes on my skin. Just to be safe, they removed three moles and sent them off for pathology. The results showed something slightly suspicious—poorly differentiated—but they were removed entirely. Maybe it was just a false alarm, who knows! Regardless, there’s no proof those moles were melanoma.

I had an extensive talk with an oncologist specializing in the digestive tract. I had nothing but negative answers for all his questions, so he moved on to request a colonoscopy, which came back completely clear. Based on that, they concluded the tumor isn't in that area.

Actually, the first pathology report indicated "metastases from an epithelial adenocarcinoma tumor." I know PET-CT has its limitations, but the only thing that showed up "colored" on that scan were two lymph nodes in the retroperitoneum, which were then removed while we wait for their pathology results.

With my urologist, I pushed multiple times for a testicular exam and a color Doppler ultrasound, but I was basically told that at 55, I shouldn't be having these kinds of issues!? I can't find any abnormalities through self-exams.

Unfortunately, I'm not in a financial position where I can just hop over to another country to seek a second opinion. My insurance covered the PET-CT, and there's only one oncology center here in the city. That leaves me "condemned" to receive treatment from them. On another note, are there high-quality, expert, reliable, and experienced oncologists for poorly differentiated tumors in a major US city like Chicago or maybe somewhere in the Northeast? Any recommendations?

All that's left is to wait for the pathology report and see what the oncology board decides. As soon as I know something, I'll let you guys know. Maybe I can help someone else facing similar problems.

Thanks for the help and suggestions. I'm fully aware I can't afford to waste time and need to start treatment ASAP. But what exactly am I treating? All this time, I've been haunted by one question: I waited 1.5 years for a lymph node to "disappear on its own"; what if I hadn't consulted a surgeon? Would it have just stayed that enlarged lymph node, or would the tumor have surfaced? I'll never know!

Most likely, it wouldn't have grown large enough to be easily noticed before your condition became complicated by metastases, so you need to start treatment immediately. It's a stroke of luck that those nodes could actually be removed. That's just how these tumors work—that's why they're called "occult." You absolutely need to see a private urologist for a testicular ultrasound! Save up the money if you have to; this is life or death.
When it comes to malignant diseases of this type, I think Rebro Hospital is the most competent option in the country. My advice is to call them and ask about the potential cost of treatment.
I don't know how insurance works in your area, but here, if something can't be detected or treated locally, there is a way to get treatment approved elsewhere under social coverage. It's a bureaucratic nightmare, but it is doable. Look into that possibility for your situation. Honestly, given the circumstances, I'd suggest looking into treatment in Germany, Italy, or perhaps Austria.

EDIT: markers?
ruggedpuma47 ruggedpuma47 Member
28 messages
joined Jan 2013
#3876 ·
Hey everyone. I’ve been off the grid for a little while, just doing my own thing... A special hello to Angela Wright and Amy Torres4.🙂
nimblepanther14 nimblepanther14 Newcomer
5 messages
joined Mar 2010
#3877 ·
Here are my own struggles and questions:

1. I spoke with the doctor. My sister is struggling to breathe—fluid has started "pooling" on the right side of her lung, making it incredibly difficult for her to catch her breath. However, she’s refusing the thoracentesis... why? The doctor mentioned that performing the procedure might only extend her life by perhaps a week or two. She shuts down every time we try to discuss it... can we actually tell the doctor to go ahead with it? Do we even have the right to do that—morally or legally?
I get the feeling she went there just so we wouldn't look at her—as if she's already given up... 😢
It’s all just... absolute garbage.

2. A question: is liver surgery actually possible? (I heard someone mention once that you don't operate on the liver)... this concerns a tumor on the liver (it's my girlfriend's father).

3. And finally, regarding myself and my offspring... if a follicular thyroid tumor metastasizes, where does it typically spread? Is it mostly just to the neck?

I'm just sitting here waiting to wake up and realize this whole thing was nothing more than a terrible nightmare...
ruggedpuma47 ruggedpuma47 Member
28 messages
joined Jan 2013
#3878 ·
Last year, I got hit with a lung cancer diagnosis. Everything moved at lightning speed; one minute I was getting a routine chest X-ray on a doctor's suggestion, and the next, I was being rushed over to the hospital in Smalltown, USA. Honestly, I can't even say I had any major, terrifying symptoms beforehand. It all happened so fast. I ended up having surgery, and it wasn't just one tumor—there were actually two primary malignant tumors, completely independent of each other and with different typings (if that’s the right term). Currently, I'm pushing through my fourth cycle of chemotherapy. Life is okay; the side effects definitely show up, but they pass, and then I'm back to feeling like myself again. I don't want to lecture anyone, but please, listen to your doctors. Ask them everything. If you or someone close to you is facing chemo, talk to them. The nurses there? They are a wealth of knowledge and can help you navigate so much. Now, look, I have absolutely nothing against herbal supplements to boost the immune system—lemons, ginger, all that good stuff... it doesn't hurt. But for heaven's sake, only do it if you keep your doctor in the loop about what you're taking. When I first realized what I was dealing with, I wanted to try *everything*—every single thing under the sun. But the sooner you or your loved ones get your head straight and accept the reality, the easier things become. When I was admitted to the hospital, I realized I was exactly where I needed to be, surrounded by people who actually know how to help. And I still feel that way today. Even after these four cycles, if more are needed, I’ll go. Even on those brutal days when the side effects are so bad I swear I'll never step foot in that clinic again, I'll still go.🙂 I'm going because I want to live the life ahead of me as fully as possible, no matter how long that life turns out to be.
melloworca6 melloworca6 Regular
551 messages
joined May 2010
#3879 ·
nimblepanther14 said:3. And finally, me and my sprouts... if a follicular thyroid cancer metastasizes, where does it go? (Most commonly). Is it just the neck?

So, you have thyroid cancer? Did you go under the knife, or did you do the radioactive iodine treatment?

I was doing a bit of reading on thyroid cancers recently. Someone dear to me was diagnosed with one—I think it was specifically follicular—and I remember reading that it can spread through the bloodstream to other organs.

edit: found it—I saw this on the Butterfly Clinic website:

Follicular carcinomas mostly spread through the bloodstream, hitting the bones, lungs, or liver—that hematogenous spread happens about 15-25% of the time. Lymph node involvement (lymphogenous spread) is less common, sitting around 2-15%. Generally, the prognosis is good, though it doesn't look quite as strong as papillary carcinoma. Treatment usually involves surgery followed by radioactive iodine.
nimblepanther14 nimblepanther14 Newcomer
5 messages
joined Mar 2010
#3880 ·
ruggedpuma47 said:... I am going there—and I will continue to go—so that I can live the life ahead of me with more quality, regardless of how much time is left.

I have to hand it to you for having that kind of courage.. 👍
I’ve been sitting here thinking... if it turns out I actually have thyroid cancer (which I won't know for sure until after the surgery in about two months).. I am not just going to roll over. I'll do absolutely everything in my power to keep living... I really hope that, in the end, it all turns out okay..
Maybe I'm overthinking things, or maybe it's just too early to be feeling this way... but when I look at my sister and see how she just lost that spark of will—it was obvious, really—it just makes that sense of resistance inside me grow even stronger.

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