Posts by Angela Wright

Megan Williams6 said:Is it actually possible to have a diagnosis of "Leiomyosarcoma" when all my gynecological results were perfectly fine? I’ve seen two different gynecologists now, and both gave me clean cytology reports. One doctor just recommended routine follow-ups, while the other suggested checking back in six months. My CIN levels are fine, my Pap smear showed no abnormalities, and they wanted me back in a year. Their clinical diagnosis was basically inconclusive regarding malignancy—both doctors concluded it was just benign intramural uterine leiomyomas. That was only two months ago, and everything from the MRI to the ultrasound looked normal. But now, after a recent CT scan, a radiologist is suggesting it might actually be "Leiomyosarcoma." From what I can tell, my uterus hasn't even grown significantly in these last few months; it’s stayed right around 100x90. My tumor markers are fresh and normal, and my mammogram was clear too. If it's a sarcoma, that means it's a malignant tumor, yet my gynecologists were adamant that it was benign...😕

Leiomyosarcoma is one of those rare tumors that you simply cannot confirm without a definitive tissue biopsy—basically, a deep-dive PhD analysis of the cells. Because of how tricky this diagnosis is, you aren't just looking at a scan and calling it a day; you’re going to need a surgical procedure to actually get that sample, which most likely means they'll be moving forward with removing the tumors themselves.
CIN tests and Pap smears aren't really a direct line to detecting sarcomas. Think of them more like early warning systems for inflammation or catching an HPV infection that might eventually lead to cervical cancer—but that’s a completely different beast altogether.

velvetsurfer71 said:Hey everyone,
I saw somewhere in a previous thread that there are two sarcoma specialists over at the Mayo Clinic, but I couldn't find any names. My cousin needs emergency surgery for a renal sarcoma, so if you could recommend someone to reach out to—whether it's at the Mayo Clinic or another hospital in Washington, D.C.—I’d really appreciate it.
Thanks so much.

It's either Dr. Šantek or Dr. Herceg at the Mayo Clinic.

Donna Harris18 said:The first PhD results from April 4th didn't point to anything specific. Then, just seven days later, they did a second biopsy on the other side of the head, and now we’ve landed on the current nightmare—an unofficial diagnosis (meaning a phone call between the neurosurgeon and the pathologist before the formal report was even typed up) of glioblastoma.😢My reaction right now isn't shock or disbelief; it's just pure emptiness—a total numbness, like everything has gone black. Please don't lecture me about writing novels or adding a million more details to this mess; this is the first time I'm ever dealing with something like this.

I strongly suggest getting your dad's tissue samples sent back from the hospital pathology department to an outside clinic for a second PhD opinion before any treatment actually starts.
Hit up Google and look for a specialist clinic in Germany, for instance. You can send them via DHL. We're talking about microscopic slides in a small box. Just file a request for a second PhD opinion. It shouldn't be a problem at all.

Donna Miller4 said:So, my mom is 84, and she’s been diagnosed with a leiomyoma about the size of a man's fist (roughly 10x10). Honestly, she isn't dealing with any bleeding or major complications right now. Two different gynecologists have checked her cytology and everything else, and they're all saying it's fine—just an intramural uterine leiomyoma. They want to follow up in six months since there's no sign of malignancy. The thing is, she’s in pain when sitting or lying down, but I don't think it's actually from the leiomyoma. It’s more likely from an old hip injury; she slipped on some stairs a few years back and banged her pelvis pretty hard. She’s been limping for about five months because this mass formed near her hip joint, which is making things tough. Her gynecologist thinks it has nothing to do with the uterine leiomyoma, but still. One doctor suggested surgery—taking out the uterus along with that mass on her pelvic bone (which is about 12x10cm). Given her age, does it even make sense to go through with something like that? How risky is an operation like that for someone in their 80s? Thanks a million!🤷

When it comes to age, honestly, probably not. But if that mass is seriously tanking her quality of life, then the option needs to be weighed. The reality is, the surgery itself might not be the primary concern; it's more about how the anesthesia could impact her overall health.
Personally, I'd go looking for a second opinion.

Megan Williams6 said:Hi everyone! I have a quick question: in the event of a Leiomyosarcoma diagnosis—specifically regarding sarcoma—should tumor markers be elevated, or are they typically only increased in cases of carcinoma? If anyone happens to know the answer, I would truly appreciate it. 😕

Unfortunately, there aren't specific tumor markers for sarcomas the way there are for carcinomas. Essentially, the markers currently available are designed exclusively for monitoring carcinomas. 😢

Jessica Fowler4 said:I’ve been reading up on celiac disease, but honestly, I’m eating gluten again and nothing weird is happening...
Also, some of my symptoms pretty much rule out celiac. Since I can handle a high-fat diet incredibly well, I don't think it could be celiac. For a stretch, I was sticking to about 1,500 calories a day consisting entirely of fats and my digestion stayed perfectly normal—I just don't see how that works if you have celiac.

Plus, the total crash I hit after a month on that diet happened way too fast to be caused by celiac, especially since I wasn't even touching gluten during that time...

Celiac disease isn't about your calorie count or fat intake; it's strictly about the gluten found in grains and certain other foods. Your body simply lacks the ability to process it.
Celiac is a chronic condition that affects all organic systems. It is a lifelong struggle. It actually shows up more frequently in adults than in children. When someone genetically predisposed eats gluten, it triggers damage not just to the intestinal lining, but to various other organs in the body as well.
Even tiny amounts of gluten-containing food can trigger an immune response in affected individuals. The clinical presentation of this disease is incredibly diverse. It can manifest at any age, though recent epidemiological data suggests most cases are diagnosed in a person's fifties or sixties.
Distinguishing celiac symptoms from other potential illnesses can be an absolute nightmare. Unfortunately, it’s common for people to bounce between different specialists for years, searching for answers. Sometimes the disease presents with zero symptoms at all, which is why we call it "silent" or "masked."
Source:https://www.celiac.org/
Get tested so you aren't just guessing.

Jessica Fowler4, the way you're describing this sounds exactly like celiac disease to me. Cutting out carbs is essentially cutting out the gluten found in grains.
You really ought to get tested; if it turns out to be celiac, even trace amounts of gluten could be absolutely devastating for you.

gentlesailor25 said:I mean, I honestly think they hit the nail on the head when they mentioned anxiety. As far as Crohn's goes, you’ve already had a colonoscopy, so that should pretty much rule it out for now—unless, I guess, you wanted to go through the whole ordeal again just to be absolutely certain. 🤷
I actually know this woman, a friend of a friend really, who was dealing with almost identical symptoms for months on end. It got so bad that her doctors were basically stumped and ended up hospitalizing her because they couldn't figure out what was going wrong. Every single test came back totally normal. It turns out, after all that, they finally sent her to a psychiatrist. She started some medication, and then, pretty much like magic, she was feeling fine after maybe two or three weeks.
Now, I'm not saying that's definitely your situation, but people really do tend to underestimate how much the mind can mess with the body. 😛

Crohn's can exist in the small intestine, and a colonoscopy doesn't reach nearly deep enough to cover the entire tract.
You could get a CT scan; from what I understand, that's thorough enough to spot Crohn's if that's actually the issue.
Look, bleeding has to come from somewhere. While we shouldn't ignore the psychological aspect, we also shouldn't let a doctor off the hook just because they can't find anything—it’s lazy to just brush everything off as "anxiety" and pass the buck. You need to find a real diagnostician.

velvethound62 said:I don't know, man. I’ve tried switching up my diet entirely, but nothing changes. It’s always the same story. There’s zero difference whether I’m sticking to plain steamed veggies for a few days or just going all out on a massive backyard BBQ with onions and everything else.

A couple of days isn't going to move the needle. If you're dealing with Crohn's, we're talking about inflamed tissue here—it takes actual time for things to settle down. You have to be 100% committed and cut out every single trigger. But listen, before you overhaul your entire kitchen, you absolutely have to get tested first. If you start messing with your diet before getting those labs done, you run a real risk of getting false negatives.
It might not even be one of the big issues I mentioned; it could just be a specific food intolerance. And catching that is actually pretty straightforward if you test for it properly.

Jesse Roberts79 said:Morning! Does anyone have any actual insight into using cannabis oil for treatment? Any experiences from Dr. Zivkov? Or maybe some rumors?

There just isn't a legal way to go about this kind of treatment. Clinical studies haven't established standardized dosages, and since it hasn't been legalized, there’s zero medical oversight or monitoring—meaning nobody is tracking how it might interact with other medications you're already taking.
Personally, I wouldn't touch those illegal channels. You can end up doing far more harm than good, both figuratively and literally.

velvethound62 said:I’ve been digging through all this info on celiac disease and Crohn's symptoms, and honestly? It just doesn't track with what I'm actually feeling...

Celiac disease can manifest in a massive spectrum of different ways, and when it comes to Crohn's, it definitely sounds like some of the things you mentioned could fit the bill.

You should get screened for celiac disease and Crohn's disease. It’s worth bringing those possibilities up during your next chat with your gastroenterologist.
And honestly, you really need to cut out anything else that's wrecking your health—which, let's be real, definitely means quitting smoking and cutting out

These little pests love to hide in cracks, under floorboards, inside couches, or deep within mattresses. You really need to hit them with some heavy-duty insecticide. Honestly, just call a professional exterminator service and see what they can pull off for you.

steelangler88 said:hiijooojjj... I turned my entire room upside down today and still couldn't find them. I don't get it. Meanwhile, they've gone and left another 2 or 3 spots overnight. I am seriously losing my mind here.
thanks for all the advice...

🙂

Wash all the bedding, swap out the mattress and pillows, and give the whole bed a thorough spray with Lysol.

stormygardener34 said:Can anyone offer some insight regarding lung cancer? We’re dealing with a massive buildup of fluid in the lungs, and it’s gotten to the point where the patient can’t move without gasping for oxygen. All the doctors are doing is draining tiny amounts through punctures, and they won't explain why they aren't just clearing out a larger volume to actually make breathing easier. Does anyone know why this is happening? They say a chest tube isn't an option, but again, there’s zero explanation provided. They just hand out painkillers and "breathing injections"... Thanks in advance to anyone who knows something or can shed some light on this...

From what I understand, performing a puncture can actually trigger an even larger effusion. There really isn't much choice other than tapping out what you can and relying on diuretic therapy, like using Fursemid or Lasix, to draw the fluid out. As for why a drain isn't possible, I honestly have no clue. You’ll have to press the doctors to give you a straight answer.

dustybadger81 said:I have a question... I mentioned earlier that my mom passed away three weeks ago from lung cancer with metastases... I haven't received any discharge papers yet. Am I entitled to them? Who should I contact? Or do they just send them out later? Thanks in advance...

You’re absolutely entitled to them, and honestly, you should have had them by now. Go straight to the department head at the hospital where your mother was being treated and demand that they mail those discharge papers to your address within two days. Tell them you will "take legal action to enforce this right if they don't comply." Literally write it down exactly like that and act on it if they give you any attitude. Look, hospitals can make a killing by withholding medical records, and believe me, playing games with paperwork isn't in their best interest.

fadedtrucker5 said:I don't really follow, so just tell me straight—what's the actual payoff here?
Thanks, 🙂

You’ll get access to cutting-edge treatments, and if you end up needing medication for the rest of your life, the pharmaceutical company running the study picks up the tab—even after the trial itself wraps up. You're dealing with a rare tumor, and because they're so uncommon, clinical trials for them are hard to come by. When they do happen, the whole goal is to recruit as many patients as possible to ensure the data actually means something.
In the US and across the globe, signing up for these studies is standard practice. I know plenty of people facing aggressive tumors with terrible prognoses who have lived for years upon years specifically because of these trials. For some, it's essentially living from one study to the next, and it works remarkably well.
If you want to see what's out there, this site lists pretty much every active study worldwide: http://clinicaltrials.gov/

fadedtrucker5, you really ought to look into getting into a clinical trial out there. Honestly, given the nature of what you're dealing with, I think you’d be a solid candidate. Start hitting Google hard and start bugging the Americans until they point you toward an open study. Hang in there!

Alexander Thompson said:I had no idea it was actually that effective... I spent years working with bees, and I used to handle stings left and right without a second thought, until about four or five years ago when the reactions started getting progressively worse... It wasn't like I was passing out or anything, but the last time I got a random sting on my finger, my entire face swelled up... So, I ditched the hives and haven't really given it much more thought... I checked in with my doctor, and he told me the immunotherapy has to be done exclusively at a specialized clinic in Washington, D.C., once a week, which is just too much of a logistical nightmare for me... Honestly, I don't know what to make of it all.

It’s a choice: you either commit to the therapy or you spend the rest of your life carrying an EpiPen and a dose of adrenaline everywhere you go.

Removed quote from previous deleted post

And then you get some encapsulated 😳
Look, people, don't fall for these kinds of spikes. Vidatox is an unregistered supplement—it hasn't been properly studied and could be dangerous, especially when it's being pushed by some "well-meaning" anonymous user on a forum. There is absolutely no legal way to import or self-administer Vidatox here in the States.