Support for families dealing with cancer and other serious illnesses (Part II)

I was just re-reading the message from the Mayo Clinic—honestly, their pricing actually seemed somewhat reasonable—where they mentioned that, as a rule, I’m not really a candidate for surgery or radiosurgery right now. They suggested that once the chemo is finished, we’d need to sit down and decide on radiotherapy, which at their facility would be $14000.
Well, that’s definitely an option (and something we’ll absolutely revisit after chemo) regardless.

My Plan B is totally falling apart here :-( :-( :-( :
Why is nobody willing to touch the bronchi?!
Or are there specific requirements regarding the size and placement of the tumor? I assumed the location wouldn't necessarily be an issue?

I guess I’m living proof that trying to plan out all these "what if" scenarios is a losing game.

Robin Diaz4 said:I have another foolish question because I was truly frightened today... is it actually possible for doctors to falsify results just to avoid upsetting a patient or their family? Is that even allowed? My father’s union rep told me that they used to write on follow-up CT scans that a disease was stable when it was actually progressing, all to prevent the patient and family from panicking. And honestly, that thought alone is distressing. Is there really a chance I won't even know my father's true condition? I can try to look at an X-ray, I suppose, but this abdominal ultrasound report—where they noted the targets are in regression—is just a collection of blots on paper to me until tomorrow. As for the CT scan, I haven't the slightest idea what it looks like, let alone how to interpret it.

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They wouldn't do that to you at Jordan. Unfortunately, through my own experience, I've met enough doctors, female physicians, and nurses there to last three lifetimes. There are plenty of old negative stories floating around about that place, but truthfully, for at least the last six years, they have deserved nothing but praise. Sometimes they might rush through conversations with patients because the volume is simply overwhelming, and they occasionally provide vague answers because they forget that patients and their relatives aren't medical experts, but they are as honest as it gets. Specifically, when my mother was diagnosed with cancer, the doctor requested that I come in personally so we could discuss everything. I asked so many pointed questions that by the second day, the woman asked my mother if I was a medical student. 😲 No matter how much I tried to fish for some trace of hope or positivity through my questioning, the doctor remained completely candid and open with me. I can confirm that same experience with everyone else I've encountered there.

ruggedfox11 said:Don't be ridiculous; they aren't actually sharing findings with the whole family, they just pass them along to other specialists. If doctors were out there falsifying reports—writing down conditions that don't exist—then the attending physician could prescribe the wrong treatment, and they'd be facing malpractice lawsuits left and right.
But look, you can always seek a second opinion if you suspect the lab results are being doctored.

I mean, sure, it sounds a bit archaic for the 21st century when everything is digitized and logged into the system somewhere... my dad’s doctor is an old-school lady from a different era, so who knows how things used to work back then...

The only thing that makes sense to me is that as a patient, I have the right to tell a doctor, "Hey, don't share my diagnosis with my family." I have a friend who didn't even realize her father was sick until he passed away. Her dad refused chemo because he knew his family would hold him accountable for it.

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Robin Diaz4 said:Yeah, I get why it sounds totally outdated for the 21st century since everything is logged in the system now... my dad's doctor is pretty old school, so who knows how things used to work back in the day...

The only thing that makes sense to me is that as a patient, I should be able to tell a doctor, "Hey, don't share my diagnosis with my family." I have a friend who didn't even realize her dad was sick until he passed away... her dad actually turned down chemo because he knew his family would hold him responsible for it...

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Robin Diaz4, I honestly don't think there's any way to fake test results ethically or even realistically... after every single CT scan, my dad's results went straight to a medical board to figure out the next steps, the specific treatment line, and the chemo dosage... I can't even imagine the chaos if those results were being faked...
When my dad's condition started getting worse, they didn't tell him directly, but they definitely told me and my mom... He eventually figured it out himself once they decided to stop the chemo and further treatments, but they told him we should just wait a month or two for him to recover a bit before deciding what to do next... It was just that little tactical dose of humanity and empathy so he wouldn't go home, lie down, and just wait for the end...
If you're having any doubts at all, you can always just ask for a second opinion...

stormyfalcon68 said:...
When my dad's condition took a turn for the worse, they didn't tell him straight out, though they did sit my mom and me down for the truth. He eventually figured it out himself once they decided to pull the plug on chemo and further treatments, but the doctors played it off by saying we should just wait a month or two for him to recover a bit before deciding on next steps...

That’s exactly the kind of "sugarcoating" I was worried about. It would be devastating if, out of some misguided sense of empathy, none of us actually knew how dire the situation really was...

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Robin Diaz4 said:I actually had the same thought regarding this kind of "withholding" information. It’s almost as if they think they're being empathetic by not letting any of us know the full truth...

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It was actually because of something exactly like this that I ended up firing my doctor—and honestly, he wasn't even in the wrong. Before we had an official diagnosis, his brother and sister-in-law flew in from Europe and told me they already knew what was going on. Apparently, they had heard through some connection involving his close friend, and they claimed his doctor was intentionally keeping me in the dark just so I wouldn't "lose it," given that I have a young child to look after.
I marched straight into the doctor's office and let him have it. I demanded to know who gave him the right to lie to me—reminding him that I am not some fragile child who needs to be shielded from reality. Even worse, I questioned his right to discuss a patient's private medical status over the phone with someone he couldn't even verify was actually family.
He tried to explain that it wasn't a lie—and technically, it wasn't, since he had shown me every single test result himself prior to that conversation—but rather that they simply don't disclose the full extent of things unless specifically asked. They do this because they can't gauge a person's psychological stability, and they leave it up to me to decide how much my husband should know.
Later, when a different doctor (and eventually his primary specialist) admitted him to the hospital, the very first thing they asked me was how much my husband actually knew.
As it stands, he only knows there is lung cancer. He hasn't really cared about the details, other than asking how many rounds of chemo he'll need to go through.

Robin Diaz4, I appreciate you clearing that up for me. He’s using a Durogesic patch, though I'm not entirely sure of the exact dosage yet; I'll have to double-check. I’ve been asking all these questions on behalf of my sister's husband. The relief just wasn't there last night—it barely provided any comfort from 8:00 PM until maybe three in the morning. Perhaps that patch releases the medication more gradually, meaning the effects aren't immediate. So, I take it they simply titrate the dose upward until it reaches the necessary level? Also, we really need to track down an anesthesiologist or a specialist who can make house calls. I'm wondering if patients have a legal right to request a nurse to administer an IV at home, considering he's been vomiting for quite some time now and has become significantly weakened.

So, ruggedfox11, are you saying that standard radiation therapy is available at other hospitals too? Is it only radiochirurgery where they charge those exorbitant fees? I honestly can't make sense of any of this—is this not chemotherapy? And does radiochirurgery essentially function as a surgical procedure? It feels like I need to spend an endless amount of time educating myself on all these technical terms just to understand what's happening.

dustyscout8 said:Angela Wright, I actually got that link to work, but I’m not entirely sure what the point is? Is it just showing how many studies exist for this specific disease? I had to search for "pancreas adenocarcinoma," and I honestly don't understand why it’s spitting out these specific results for that diagnosis. Maybe it's just my shaky English... And regarding what you wrote about trying to get into some smart new drug trial? Where exactly can we even try to apply? Ugh, I'm totally lost.😢
Yeah, I'm right there with you on that comment—instead of blowing cash on houses, apartments, or cars, it feels like we should be squirrelled away money from our very first day on the job just so we actually have something to fall back on when we get sick. Because once you're hit with an illness...😢

Look, they've published studies covering everything from brand-new drugs to various types of supportive therapy. You can click into any one of them to see exactly where they're being conducted and what the requirements are.
If you need a hand navigating Google, just let me know.

To start off, this study is being run right here in the States. The only catch is that they mention the target group is patients who haven't tried any other therapies yet, but it's still worth asking about.
https://clinicaltrials.gov/ct2/resul...cr=Open&map=EU
This shows the total number of studies across different countries in the US related to pancreatic adenocarcinoma.


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When it comes to pain management, you need to hunt down a specialist in pain medicine. Don't just settle for whatever they hand you; demand that an anesthesiologist titrate the exact dosage of your medication cocktail and actually walk you through how to incrementally scale up the dose as needed.

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ruggedfox11 said:I actually fired my doctor because of this kind of nonsense (even though he wasn't technically wrong). Before we had an official diagnosis, his brother and sister-in-law showed up from Europe claiming they already knew the whole deal because they’d heard it through some connection from his close friend. They basically told me his doctor was keeping him in the dark just so I wouldn't "lose my mind," assuming I couldn't handle the truth because I'm just a kid.
I marched straight into the doctor's office and tore into him. I demanded to know who gave him the right to lie to me—since I'm clearly not some child who needs to be shielded from reality—and even worse, who gave him the right to discuss a patient's private medical status over the phone with someone he didn't even know for sure was family.
He tried to claim it wasn't true (which it wasn't; he had shown me every single test result personally before all this drama), arguing that doctors don't always disclose the full extent of a situation unless asked directly, because they can't gamble on a person's mental stability. He essentially said it's up to me how much my husband finds out.
When the second doctor (and later his primary specialist) admitted him to the hospital, their first question to me was whether my husband knew the details.
As it stands, he only knows it's lung cancer. He didn't care about anything else besides figuring out how many rounds of chemo he'd have to endure.

This might be worth looking into.
https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
They haven't started recruiting patients for this study yet, but once they do, it will be available in Small Town, USA, at Catholic Health Initiatives and the Mayo Clinic. You should check in on when they start and try to get him enrolled.

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Angela Wright, I appreciate your kindness; you are truly dedicated and have been an immense help to all of us
. Unfortunately, I did manage to confirm that they are specifically looking for patients who haven't undergone any prior therapy 😢. Regardless, we will continue our search and keep digging... A HUGE THANK YOU TO YOU
.

dustyscout8 said:Angela Wright, thanks for being so kind. You’re incredibly dedicated and you help us out so much! :*
Yeah, I managed to catch—unfortunately—that they’re specifically looking for patients who haven't undergone any prior therapy. 😢 No worries, we'll just keep digging and searching... HUGE THANKS!

Once you click through to the diagnosis option, it opens up a map view. From there, just scan the surrounding countries to see what might be applicable.

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dustyscout8 said:So, ruggedfox11—is radiotherapy something you can get at other hospitals too? Is it just that radiosurgery is where they charge you an arm and a leg? I’m honestly a bit lost here—isn't that just chemotherapy? And does radiosurgery basically mean surgery? I feel like I need to sit down and really study all these terms properly...

Think of it this way: radiotherapy is radiation treatment, whereas radiosurgery is essentially an operation. :-)
To clarify—you can receive radiation therapy at a local hospital through Medicare, or even go to New York City for laser removal via Medicare coverage—it's just that, frankly, paying out of pocket privately doesn't make much financial sense for us.

Angela Wright said:I thought this might be helpful for some of you.
https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
They haven't actually started recruiting patients for the study here in the States just yet—but once they do, I know there will be openings at sites in Small Town, USA, Catholic Health Initiatives, and the Mayo Clinic. It might be worth checking in with them periodically to see when they open up so you can try to get yourselves enrolled.

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Thanks, Angela :-)

Is there perhaps an oncologist among us who might be willing to review a set of test results? I am looking for a professional opinion and some actual guidance... because quite frankly, we feel completely helpless in all of this.
I also want to ask again regarding dietary recommendations for those battling esophageal cancer who are struggling with constant vomiting... what are you all finding works? I am just trying to get some ideas for something that might actually stay down in the stomach instead of being rejected immediately.😢

dustyscout8 said:Is there perhaps a doctor or an oncologist here who would be willing to look at some test results? I just need a second opinion and maybe some advice. We feel completely helpless right now...
Once again, I’m asking: what kind of diet works for someone battling esophageal cancer when they can't stop vomiting? What are you all feeding your loved ones? I'm looking for any idea—something that might actually stay down in the stomach instead of coming right back up immediately...😢

Here is some dietary guidance specifically for esophageal cancer.
http://www.cancerresearchuk.org/abou...ving-with/diet
Hang in there.

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Angela Wright said:The information provided here is essentially just a diet plan for lizards.
http://www.cancerresearchuk.org/abou...ving-with/diet
Stay smart.

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Thanks again! That was an incredibly well-written piece over there... Big thanks!

Angela Wright said:This might be helpful for some of you.
https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
They haven't started recruiting patients for this study here in the States just yet—but they'll be opening up sites in Small Town, USA, at Catholic Health Initiatives, and also over at the Mayo Clinic. It might be worth checking in to see when they go live so you can try to get in on it.

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I actually just looked into this. He isn't currently taking Topotecan, and unfortunately, the study is specifically for those who have used it previously :-(

I’m going to spend some time over the next few days really digging into the details of this. I noticed Dr. Smith is heading up the study in New York City—it's possible his doctor might be involved in a similar trial as well.

My mom’s got this wound on her abdomen and groin area—doctors are saying it's Non-Hodgkin lymphoma breaking through the surface. Her GP says it needs to be cleaned out because it's getting infected, but the hospital staff there won't touch it. Does anyone know a good private surgeon who could actually handle this? I think a surgeon took care of something similar for her once before.

Thanks in advance for any help