Posts by crimsongull20

nimblepanther14 said:Psychotherapy will be my weekend getaway outside the city...

Smart move. 👍

nimblepanther14 said:Thanks... Hope I'm not just being paranoid... I really hate this uncertainty...
Don't get why some people say they don't want to know the results...
We'll see what the pulmonologist says...
And hopefully the anesthesiologist won't push back the surgery because of it, so I can have this sorted before I meet him.

The tumor was diagnosed before all this started... but sometimes when I'm stressed, it feels like it's actually pulsing in my salivary gland... Obviously, it probably isn't actually pulsing, but that's how it feels.

If I were you, I’d look into some light psychotherapy. Might help.

As for the thyroid surgery: I personally know three women who had their entire gland removed, and they were all recovered in about a week, barely feeling any pain at all.

Just lie down, get some sleep, and relax. Whatever is going on in your lungs is almost certainly nothing, and if it turns out to be something—worry about that later. Don't do it now.

nimblepanther14 said:I've buried two people in the last month... 😢
Now it's my turn... okay, a tumor and thyroid surgery shouldn't be a huge ordeal.
But... as part of the pre-op, I had a chest X-ray done...
And it turns out I have, and I quote, "a small amount of fresh pleural effusion."
Getting bloodwork tomorrow, then seeing a pulmonologist next week...

I don't know what to think... I'm angry because I really don't need this right now... and it might delay the surgery...
Worst of all... maybe I'm just being a pessimist or poorly informed... but I can't shake the feeling that the fluid in my lungs is from the thyroid tumor... you know what I mean...
I don't recall having an infection or any chest injuries that would cause this...
What should I do, start taking some kind of immune booster just in case...?

If it is... I don't know what I'll do... I don't know... I'm scared, I'm mad, I'm confused...
And why... why... isn't what I'm dealing with enough... why does it have to get complicated?
Sorry... it's just been hard to talk to anyone about this... so I'm venting here... (mods, feel free to delete/edit if this is inappropriate)...

Maybe that pleural effusion part was misread, especially since it says "a small amount." Sounds like someone's just guessing at the interpretation. Besides, there are plenty of other reasons that fluid could be there, and most of them aren't scary. In my experience, X-ray readings are wrong more often than they're right.

Not an expert, but thyroid tumors usually don't grow fast, at least not that I know of. I have a friend who was diagnosed very young and had to go under the knife twice because the first surgeons missed something, but she ended up fine in the end.

Seems like you're panicking a bit early, though given everything you've lost lately, I get it. Sorry you're going through this... keeping my fingers crossed for you.

brisklynx62 said:Just wanted to let everyone know that after an 18-month battle... 13 months longer than any of the doctors predicted... my mother finally found peace in the early hours of yesterday morning... a place free from all pain and suffering.. 😢 She fought so hard, truly brave and selfless, showing incredible patience despite the unimaginable agony she endured.. pains that continued even through massive doses of morphine..

But it's over now.. it's done.. the pain is gone..

Goodbye, Mom.. until we meet again.. thank you for everything.. ♥

I'm so sorry. 😢

Time for an update on my aunt's situation.

A few radiologists were convinced it was cancer and metastases based on her lung CTs and X-rays, but the PET scan and markers came back negative. The Pulmonologist changed his mind on the diagnosis and isn't recommending more testing. She’s relieved and is done with all of this... we're just hoping the Pulmonologist is right.

Thanks again for the advice. Wishing health to everyone here, for yourselves and your loved ones.

Kyle Lopez36 said:Thanks. I gave them a call and they don't take Medicare for MRIs. They do in Scranton (which would be a bit of a drive anyway if there are other options), but they're fully booked this month and they aren't even sure if they can process insurance for next month. Any other ideas?

Maybe Dr. Jackdaw?

http://najdoktor.com/kresimir-cavka/d16119

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.

Angela Wright said:If she actually started proper treatment now, things might slow down. Otherwise, complications and metastasis are coming fast, and quality of life will tank. I'm not sure how lucid she really is when it comes to making her own calls, but if she knows the reality, you'll have to respect her choice. It’s going to be brutal, especially once the symptoms hit. I have an aunt in my extended family dealing with the exact same thing—invasive breast cancer. She refused to accept the diagnosis or go in for surgery. A year later, she's finally agreeing to the surgery but still refusing radiation. Six months after that, everything goes south. It gets incredibly painful, her arm swells up, and she can't even hold it in the right position for treatment because of the pain. It's likely an issue with the artery supplying blood to the arm, and generally 😢 Now we're all to blame because we didn't "explain it well enough" 🙄 (my cousin is a doctor, my sister-in-law is a doctor, and I'm educated myself... 😉 ). It's a whole ritual. We explain it, she listens, then she hears some random person say the doctors messed up, or she watches some cable news segment about alternative medicine and conspiracies, and it all goes out the window again. She's just waiting for some third-party validation to tell her she doesn't need it. That's just how it is with the elderly.

Sorry you're dealing with a similar situation. My take? The doctors might end up doing more harm than the disease itself, especially since she's completely in denial right now. Plus, there are too many horror stories from people nearby who suffered through chemo, and maybe not enough examples showing what happens when you do nothing.

We might end up with the same outcome. We'll see... 😢

Just an update: my aunt had her pulmonology appointment. They repeated her chest X-ray too.

The pulmonologist is pretty sure it’s malignant and has spread. He’s pushing for a bronchoscopy, lung lesion biopsies, and a PET/CT scan. She’s convinced she’s perfectly fine and thinks they're just overreacting... she's undecided on which tests to take, though she's flatly refusing the bronchoscopy. Right now, she won't even consider our suggestion to get a second opinion in a Small town, USA with her sister Sandra. She thinks she should have just gone to the pharmacy for some cough syrup instead of wasting time at the doctor... but she hasn't completely ruled out further testing yet.

Anyway, here is her chest CT report (with contrast):

Standard protocol MSCT of the chest performed:

Several small mediastinal lymph nodes; the largest pretracheal node measures approximately 7 mm in short axis.

Within the lung parenchyma, along the bronchovascular bundle for the laterobasal segment of the right lower lobe, there is a lobulated consolidation. It shows visible spiculations extending toward the parenchyma and the visceral pleura, measuring roughly 33x17 mm on axial sections—this formation is suspicious for a primary process and requires further workup.

Multiple nodular changes are visible bilaterally in the lung parenchyma: the largest on the right is in the superior segment of the lower lobe at 9mm, and the largest on the left is in the posterobasal segment at 8mm.

The described nodular lesions are suspicious for secondary changes.
Pleuroparienchymal adhesive adhesions are located at the left base.
No pleural effusion.
Visualized bones show no evidence of lytic changes.

On sections through the upper abdomen, two cystic lesions are visible in segments II (8mm) and IV (6mm) of the liver parenchyma.

Maybe someone can give me a rough idea: if the radiologist is right, what are the chances that chemotherapy (assuming she agrees to the tests and we find out what we're dealing with) would do more harm than good? The pulmonologist says surgery and radiation aren't options... She isn't really in pain and is fully mobile for now.

Nancy Lee said:Not doing anything about it right now. That's the issue. Need to pull myself together...

Just take it slow. It's normal to hit a breaking point; happens to everyone in these situations. If it helps at all, I felt the exact same way when my dad was sick.

wearytrucker22, sending you all the strength, luck, and healing in the world...

Kevin Garcia12 said:Edit:
By the way, just a heads-up—American hospitals don't always stock every single anesthesia drug out there. They definitely don't have enough variety to allow for that kind of "personalized choice" based on what a patient wants. So, the idea that certain dosing shouldn't happen—which might be a reasonable assumption if you could tailor everything perfectly—just doesn't hold up in the reality of our healthcare system. If my only option for pain relief is something that lasts at least an hour, and I don't have access to the stuff that lasts 10 or 30 minutes, I'm stuck. I either let you suffer or risk complications during waking... Pick your poison, I guess...

In that case, is there any scenario where the anesthesiologist does a pre-op check and tells the patient: "Look, given your medical history and the type of surgery, we really need drugs X, Y, and Z, but the hospital doesn't have them in stock. Do you want to go buy them and bring them in before the procedure?"

Angela Wright said:Just head to the Small town, USA clinic. They’re the experts on this stuff, and if it’s an emergency, they don't make you wait more than a day, from what I know.

It'll take me some time to convince her... unfortunately. She heard through the grapevine that people in that Small town, USA aren't great, and she has this habit of believing everything she hears and then stubbornly sticking to it.

We won't be making any treatment decisions without consulting Sandra first. But given her biases, it might take me a couple of weeks to steer her toward the clinic in Small town, USA. Honestly, I'd rather just pull her away for a private consultation—maybe with someone highly rated who also works at the Small town, USA clinic. If she actually likes them, things will go much smoother...

Angela Wright said:It could be pneumonia. They’ll probably need to repeat the X-ray, which is why they left that three-week gap... who knows. Doesn't seem right that nobody explained anything.

It looks like the staff at the desk just scheduled her three weeks out without even checking with a pulmonologist. She didn't know how to handle it, so she just grabbed the results and took them to her GP instead of insisting on being seen urgently. So now we're stuck. No one was there with her, which was a mistake. This isn't some Small town, USA situation; this is the Local Credit Union. We really should go back there with her and demand she see the specialist sooner, but neither my brother nor I can make it this week because of work. We'll probably have to find a private appointment sometime this afternoon... and just use the doctor at the Local Credit Union as a second opinion in three weeks.

We'll see. Thanks.

Angela Wright said:Look, if we're talking about a fast-moving microcellular cancer, I wouldn't just sit around waiting. Those shadows might be something else entirely, but you can't know for sure without a PhD's input. Given her age and overall health, if the news is bad, you're going to need a massive amount of wisdom and strength to make the right call on treatment... just being honest with you.
Check in with Sandra first (there's a reason I'm suggesting her), then if you really need to, start calling private specialists.

There’s no way we can wait. She needs to see a pulmonologist within the next two or three days, if at all possible.

She's actually doing quite well physically, aside from being diabetic—on insulin—and having high triglycerides. She isn't feeling any symptoms at all; this was just a fluke discovery because an X-ray was ordered due to pneumonia.

I'm bracing for impact... I've already lived through three near-death experiences with cancer—my dad, a close aunt, and my aunt's husband just two years ago—but those were all different types. I have no idea what we're dealing with regarding lung cancer, and there's zero time to play researcher.

Thanks anyway. We'll reach out to Sandra. 🙂

Angela Wright said:Secondary means metastasis, and it can happen within the same organ—like moving from one lung lobe to another. Any other scenario, like a new primary tumor, requires specific diagnostics to confirm. Unfortunately, they won't move forward without a bronchoscopy, though it’s really not that bad. People just have preconceptions and get anxious about it... that's why they hesitate. As for a private pulmonologist, I'm not sure, but there is an oncologist named Cepulic. Around here, for some reason I can't wrap my head around, oncology treatment for lung cancer patients is almost always handled exclusively by pulmonologists. Try calling Jordanovac and asking for the head nurse, Jasan Karabatic. She runs the association for people living with lung cancer and might have advice regarding that ten-week wait. She's there from 7 to 3 on weekdays; maybe try reaching out toward the end of her shift.

Thanks so much for the quick reply.

I know a bronchoscopy isn't scary, but I'm struggling with how to convince her. She's 71 and dealing with some mild dementia; she just doesn't realize how serious this is... I'm hoping the pulmonologist can handle it.

I was thinking about reaching out to Dr. Ivan Cucic privately tomorrow, but I don't know if anyone has worked with him. I also saw that Lacic Clinic offers pulmonary exams and multi-specialty consultations involving oncologists, but I'm not sure which specialists they partner with. Anyone have leads?

So, basically, don't expect a joint pulmonologist-oncologist consultation...

Is there any chance those lesions on the CT aren't malignant? I assume not? 😢

This is my aunt. She doesn't have kids and has been like a second mother to me my whole life... she's everything to me.

Need some urgent help here. 😢

A family member just had a chest X-ray and a CT scan. They found a 33x17mm mass on the right lung suspicious for a primary process, plus two smaller nodules at 9mm and 8mm that look like secondary changes. The doctor thinks surgery, chemo, or both will definitely be necessary.

Does "secondary changes" imply suspicion of metastases? And can metastases actually show up on the same organ as the primary tumor? I don't have the full report handy, so I can't say much from this alone. Does having both primary and secondary lesions in the lungs mean those secondary ones are likely metastases from the first, or could there be a second primary process elsewhere?

Is there any way to skip a bronchoscopy during further diagnostics? For reasons I can't quite grasp, the patient is terrified of it.

The pulmonologist appointment isn't for another three weeks, and we absolutely cannot wait that long.

I also need an urgent recommendation for a top-tier pulmonologist in a major US city, and ideally an oncologist who sees patients privately.

Thanks so much.

Scott Allen10 said:Every procedure carries risk. Just don't lose your mind scrolling through all that online "info"...

Depends on if you can tell the difference between "information" and actual facts. If it wasn't for the internet, I probably would've ended up disabled despite having a small army of specialists on my side.

The thing is, they simply wouldn't let me access the highly publicized details they chose to ignore...

I need an urgent recommendation for a top-tier pulmonologist and oncologist in NYC, preferably private given how fast this is moving.

Thanks in advance.

Larry Patel4 said:I'm not entirely sure if you're hitting the nail on the head here, because honestly, when I finally retire, I suspect I'll find everyone around me a whole lot more tolerable. 😁

Same here, assuming I make it that far... 😁

I'm lazy, though. I don't really care if I'm being useful or needed. People who actually care about being productive tend to struggle with retirement.