Support resources for families dealing with cancer and other serious illnesses

Kevin Bishop10, the pathologist is recommending more tests based on some new findings from the pathology report. For instance, mesothelioma is a type of cancer that targets the lungs—specifically the pleura—and it’s the most common form seen in people who have had prolonged exposure to asbestos over the years.
I agree with Body Halle that oncologists are the true experts when it comes to this stuff, but let's be real: even among specialists, there's a hierarchy. You want the ones who specialize in occult carcinomas and work at major centers of excellence. Those places handle a much higher volume of complex cases, which means they stay on the cutting edge of research far more than a place like Mayo Clinic, where they tend to stick strictly to standardized chemo protocols. In a facility like that, you can basically just hope you receive the standard best-case scenario for your condition. To make matters worse, doctors in our neck of the woods rarely bother consulting with specialists at those top-tier research hubs when they hit a gray area, which is something I find particularly frustrating about our medical culture.
Have an honest conversation with your oncologist. Ask them directly about that specific option and put them on the spot by asking how they would handle it if it were their own life or their own family on the line.

Kevin Bishop10 said:Thanks for the quick reply.

Briefly regarding the pathology report: out of the cluster of lymph nodes, "6 show signs of chronic lymphadenitis and reactive sinus histiocytosis without evidence of metastatic malignant epithelial neoplasia."

The issue is those other 3 nodes, which are entirely "infiltrated by malignant epithelial cells."

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

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

It even suggests a "detailed patient evaluation." What kind of evaluation, when I've already done CT, MRI, PET/CT, etc.?

None of these "diagnoses" make sense to me, except that they don't even know where the primary tumor actually is!

WHAT DO I DO? Who should I see in Washington, D.C., to have all these results thoroughly reviewed by someone with enough experience that I could trust their opinion without hesitation? How do I get to a specialist like that as fast as possible?

I don't know who to recommend in Washington, D.C., unfortunately.

In your situation, if you can manage it at all, I think I’d skip America entirely and hunt down a specialized diagnostic center in a more developed country. That would probably be the fastest route, if you have the choice.

For me, dealing with our system cost nearly three years of disability, including over $67 wasted on wrong diagnoses, incorrect therapies, and horrific pain the whole time... all because of something relatively minor and non-malignant. Honestly, I never would have received a diagnosis here if I hadn't gone abroad and educated myself enough to make more sensible assumptions about my own condition than my doctors did. Since I'm a complete layman, it's truly shameful.

Of course, that doesn't mean you'll be as unlucky, but maybe you just don't have time to waste. Starting chemo without an exact diagnosis sounds like a terrible idea.

I hope someone has a good recommendation for Washington, D.C., and I wish you the best of luck.

Kevin Bishop10, get a hold of Reese Witherspoon and tell her she needs an oncologist for a second opinion regarding Dr. Santek. You can just email him everything he needs; the guy is such an enthusiast about this stuff that he'll either dive right in or at least point you toward the right experts to get help. Make sure you emphasize that we're dealing with an occult carcinoma.

Angela Wright said:Kevin Bishop10, give Reese Witherspoon a call and ask about an oncology second opinion from Dr. Santek. He’s easy to reach via email, and he’s enthusiastic enough that he might actually look into it or at least point you toward someone who can help. Be sure to emphasize that we're dealing with an occult carcinoma.

Thanks for the advice. I will do my best to get in touch with Dr. Santek.

Angela Wright said:Kevin Bishop10, maybe call Reese Witherspoon and ask for an oncology second opinion from Dr. Santek. He’s pretty easy to reach via email, and he's enthusiastic enough that he might actually look at it or at least point you toward someone who can help. Just make sure to mention it's an occult carcinoma.

Is Dr. Santek generally open to giving second opinions?
My dad's situation isn't great; metastases showed up on the other side of his neck and in his chest. Right now, he’s undergoing radiation on both sides of his neck, and after that, he'll start oral chemo for a week at a time. The doctor mentioned this pill-based chemo will be tougher than the IV stuff he was getting before. The prognosis isn't looking good, so I guess it wouldn't hurt to seek a second opinion.
I think I've asked this already, but I'm wondering if microcellular treatment is the same here as it is abroad—like, does it even make sense to take him overseas? When I brought this up with Ms. Karabatić over at the Jedar association, she told me things are basically the same everywhere, implying they couldn't do anything more out there than what we have here in the States.

To whom it may concern,

Does anyone happen to know where I can purchase the tablets mentioned in the title?

The local representative for Johnson & Johnson in Washington, D.C. hasn't been returning my calls; there has been absolutely no response whatsoever....

I would appreciate any information you could provide....🙂

Nancy Lee, you should reach out to him, though honestly, his expertise is really more suited for those rare tumor types and outlier cases.
I’m with Sandra on this one. Unfortunately, once small cell carcinoma starts metastasizing, the treatment path remains the same; the only real difference is that you might find better palliative care options elsewhere. 😢

Charles Williams13 said:Hi everyone,

Does anyone know where I can pick up the pills mentioned in the title?

The local representative for Johnson & Johnson in Washington, D.C. isn't getting back to me—just total radio silence....

Please let me know if you have any leads....🙂

Your best bet is checking the pharmacy over at Pike Place Market, though honestly, if this was part of an official prescription, you really shouldn't be having trouble getting it through the hospital. If the phone lines are dead like they are now, I’d probably just drive straight down to the Oreskovicev headquarters myself to get some answers.

Angela Wright said:Nancy Lee, you should probably reach out to him, though he’s mostly useful for those rare types of tumors and specific scenarios.
I guess I agree with Sandra. Unfortunately, when you're dealing with small cell carcinoma that's already metastasized, the treatment options are pretty much the same everywhere; maybe the only difference is that palliative care is slightly better abroad. 😢

But what about small cell cases where it hasn't metastasized yet? Is the treatment here different from what they do overseas?
And in what way exactly is the palliative care better over there?

Nancy Lee said:What about microcellular cases where there hasn't been metastasis yet? Isn't the treatment protocol essentially the same both here and abroad?
And how exactly is palliative care superior overseas?

Look, this is an incredibly common malignancy. Treatment protocols are established at a global level, which individual nations then adopt—and America follows those international standards. That applies to both metastatic and non-metastatic stages. Unfortunately, the nature of microcellular lung cancer
is such that once it decides to metastasize, it moves lightning fast. Once you hit that stage, the goal shifts toward slowing the progression as much as possible. When curative medicine reaches its limit and can no longer stop the disease, palliative care steps in. It manages pain and handles all the other symptoms caused by the progression, essentially focusing on quality of life. Here in the States, palliative care is still catching up; we really only have one major public hospice facility in San Francisco, while everything else is just private clinics with under-trained staff. In most other developed countries, this type of healthcare has been standard practice for ages.

Angela Wright said:Look, this kind of diagnosis pops up all the time. Treatment protocols are basically decided on a global scale first, and then countries just adopt them at the national level—which is exactly what happened here in America. It’s the same deal whether you're dealing with metastatic or non-metastatic disease. Unfortunately, the whole nature of microcellular lung cancer...
The thing about this kind of cancer is that once it starts metastasizing, things can spiral out of control pretty fast. Once you hit that stage, the whole goal shifts toward slowing down the progression as much as possible. When curative medicine hits a wall and just can't do anything else, palliative care steps in. It’s all about managing pain and dealing with the side effects of the disease to actually give someone some quality of life. In the US, this kind of care is standard practice and has been for a long time. Here? We’re still stuck in the early stages. We basically only have one public hospice facility in San Francisco; everything else is just private clinics staffed by people who aren't exactly specialists in this field.

We never even considered anything like hospice care. For now, Dad is still mobile and able to handle things on his own, so we’re just hoping he can stay that way for as long as possible.
Where else can I look for solid info on palliative care besides these forums? I really don't want us to end up in a situation where the care is subpar and we're stuck hunting for answers on internet message boards.

Nancy Lee said:We’ve never even considered hospice. Dad is mobile right now and can handle everything on his own, so we're just hoping he stays that way for as long as possible.
Where is the best place to look into palliative care besides these forums? I don't want us to end up in a crisis where things are going downhill and we're scrambling for answers online.

Your primary care doctor might be able to help, but honestly, the system here is a total mess—it's completely unorganized, leaving most families to fend for themselves and figure it out as they go. That said, don't let this weigh you down prematurely; your dad has his own fight ahead of him, and you need to stay focused on the present. You cross bridges when you actually get to them.

I can’t say enough good things about Dr. Santek. Our family had a really wonderful experience working with him, too.

I'm wondering if there’s actually a set limit on how many rounds of chemo someone can go through. My dad is starting his eighth round next week, and this time it'll be in pill form.
And when do they just... stop? When do doctors decide it's enough and basically tell you, "this is as far as we go, and from here, it's up to fate"?
I guess I spend way too much time spiraling about the future instead of focusing on right now, but I feel like I need to know certain things so I don't get blindsided by whatever the doctor says. I never really thought about the limits of chemo until I saw what happened with a guy in my dad's department. They just sent him home and told him there was nothing left to do. His cancer had spread to his brain, but the whole thing felt so strange to me—he was still mobile and could handle most things himself, yet they essentially just let him go home to die. I don't know the full story, so I can't say for sure what went down, but I know what I saw and what I heard.

Nancy Lee said:I’m wondering if there’s a specific limit on how many rounds of chemo a person can take? My dad is about to start his 8th round—this one will be in pill form for a week.
And when do they actually stop? Do doctors just look at the patient and say, "That's enough, we're done, now it's up to fate"?
I find myself spiraling into the future instead of staying present, but I need to know certain things so I don't get blindsided by a doctor's decision. It never crossed my mind until I saw a guy from my dad's department get sent home because they told him there was nothing left to do. His cancer had spread to his brain, but the whole thing felt surreal to me—the man was still mobile and doing so much on his own, yet they basically just let him go home to die. I don't know the full story, so I can't claim to know exactly what happened, but I know what I saw and heard.

Every single chemotherapy drug has a precise dosage calculated based on the patient's height and body mass; this isn't guesswork, it's strictly regulated by protocols established through years of rigorous clinical trials. On top of that, the intervals between treatments are also predetermined. When a treatment stops showing the expected progress over time, the patient is taken off that specific regimen, and doctors move on to the next line of therapy—essentially switching to a different drug—and this continues for as long as viable options exist. Unfortunately, many people burn through all their available options while they are still in relatively good shape. Chemotherapy is an incredibly invasive and toxic way to fight a disease, and once signs of deterioration appear during treatment, you simply cannot continue to poison the patient and destroy their quality of life. In cancer treatment, maintaining that quality of life is just as much a priority as extending survival.
Stop looking at what's happening to other people. You don't have the full picture of their specific situation, and you MUST focus on your dad and the here and now. Put your fears and your misery aside, because if you let them take the wheel, the whole car is going to go off a cliff!

Angela Wright said:Every chemo drug has a specific dosage calculated based on the patient's height and body weight. It’s all strictly regulated by protocols established through years of clinical trials. There are also set intervals for when the therapy is administered. If things don't show the expected progress after a while, the patient is taken off that treatment and they look into the next line of therapy—basically, moving to a different drug—and it keeps going until there are no options left. Unfortunately, many people overlook available options while they're still in relatively good shape. Chemotherapy is an incredibly invasive and toxic way to treat someone; once signs of worsening appear during treatment, you can't just keep poisoning them and destroying their quality of life. When treating cancer, maintaining quality of life is just as much of a priority as extending it.
Don't worry about what everyone else is doing because you don't really know what their situation is. You HAVE to focus on the here and now, and on your dad. Put your own fears and misery aside, because if you don't, everything is just going to go downhill fast.

Angela Wright, thanks so much for this and for all your other replies.
I know I need to stay focused on the present. Even if I am, I just felt like I needed to understand certain things for the future.
My dad got out of the hospital today and headed home; he'll be taking chemo in pill form for a week. I'm not sure which pills yet, so I'll ask you once he gets them.
He still hasn't regained his voice. The doctor said it probably won't come back, and that's what's killing him. It's really eating him alive.
And his cough... it's driving me crazy. It just won't stop. I don't get it. He was on Codeine for two weeks, but the doctor told him to stop taking it. Things actually seemed a bit better when he stopped, then he started radiation—five sessions on each side of the neck—and things improved slightly again. But now that the radiation is over, the coughing is back and it's insane. When I asked the doctor why he won't stop coughing, she just said there are too many nodes in his neck and they can't do anything about the cough. It's terrible. Any change in temperature, any move from a heated room to the cold, and he's stuck in a coughing fit. It's a disaster. I'm hoping this chemo helps with that, but I'm scared because the doctor mentioned this one is stronger than the IV ones he was getting, so I'm worried about how he'll handle it. I'm praying to God that he handles it as easily as possible and that there aren't too many side effects.

Happy Easter to everyone celebrating!!! 🙂
Does anyone happen to have any experience with Dr. Darkness regarding Rib issues? Dr. Radic mentioned my mom would need to undergo radiation therapy for about five or six weeks, every single day. We decided to get a second opinion, though, and through some connections, we managed to get an appointment with him. He’s actually recommending surgery instead. We're heading in to sit down and talk with him this week.

restlessowl3 said:Happy Easter to everyone celebrating!!! 🙂
Does anyone have any experience with Dr. Darkness from Rib Hospital? Dr. Radic suggested my mom undergo radiation therapy for five or six weeks straight, but we decided to get a second opinion and managed to get a referral to him through some connections. He’s actually recommending surgery instead, so we’re heading in to sit down with him this week.

Dr. Darkness is the absolute best 🙂 He works on Paladin's team, and when it comes to neurosurgery, he's basically a legend in the field here. If a guy like him says it can be done, you can take it to the bank. Highly recommended!

Angela Wright said:Dr. Darkness is the real deal. 🙂 He works alongside Dr. Paladin, and when it comes to neurosurgery, he’s basically a legend in the field here. If he tells you it can be done, it gets done. I'd highly recommend him!

Alright, thanks so much... 🙂