Osteolysis: Possible pelvic bone tumor and potential uterine Leiomyosarcoma

It’s incredibly frustrating because I’m getting totally conflicting advice. One doctor insists everything has to be surgically removed, while another says surgery isn't even on the table—suggesting radiation will just burn away the pelvic tumor and the pain will vanish along with it. It’s all so contradictory... I’ve read that Leiomyosarcoma is such a rare diagnosis that most doctors might go their entire careers without ever seeing a single case, yet my mom gets hit with it immediately after her CT scan—just like that! "Matches the profile for Leiomyosarcoma," they say, as if they deal with this every single day... meanwhile, I've read that these kinds of diseases are notoriously difficult to prove, requiring a full PhD analysis of the tissue samples. Most people just want to hear, "Please, just let it not be cancer." They get a mountain of test results and feel a momentary sense of relief when a report says "no malignancy," only to follow an orthopedist's recommendation for a CT scan, despite already having an MRI that mentions "Open etiology," only to be slapped with "Sarcoma"... how do you even find it? The odds are like one in a thousand... I honestly can't wrap my head around it...🤷🙂🙂

Megan Williams6 said:It’s incredibly frustrating because I’m getting totally conflicting advice. One doctor insists everything has to be surgically removed, while another says surgery isn't even on the table—suggesting radiation will just burn away the pelvic tumor and the pain will vanish along with it. It’s all so contradictory... I’ve read that Leiomyosarcoma is such a rare diagnosis that most doctors might go their entire careers without ever seeing a single case, yet my mom gets hit with it immediately after her CT scan—just like that! "Matches the profile for Leiomyosarcoma," they say, as if they deal with this every single day... meanwhile, I've read that these kinds of diseases are notoriously difficult to prove, requiring a full PhD analysis of the tissue samples. Most people just want to hear, "Please, just let it not be cancer." They get a mountain of test results and feel a momentary sense of relief when a report says "no malignancy," only to follow an orthopedist's recommendation for a CT scan, despite already having an MRI that mentions "Open etiology," only to be slapped with "Sarcoma"... how do you even find it? The odds are like one in a thousand... I honestly can't wrap my head around it...🤷🙂🙂

Every major global medical guideline points toward surgical removal of a sarcoma as the primary goal, whenever it's feasible. That said, every patient is an individual case. Doctors have to weigh every single variable—age, overall health, how far the disease has spread, and the potential to extend a high quality of life before making a final call. In my opinion, the smartest move is to track down one of those world-renowned centers of excellence and demand a second opinion.

True, but where can a person even turn when everything costs so much... if it really is a sarcoma, I’ve read that surgical removal is usually the best bet, even if there's a fifty-fifty chance of it coming back. Still, one oncologist is suggesting radiation therapy instead (though I've heard sarcomas aren't particularly sensitive to radiation or chemo?...)

Megan Williams6 said:True, but where can a person even turn when everything costs so much... if it really is a sarcoma, I’ve read that surgical removal is usually the best bet, even if there's a fifty-fifty chance of it coming back. Still, one oncologist is suggesting radiation therapy instead (though I've heard sarcomas aren't particularly sensitive to radiation or chemo?...)

If you send over the translated medical records and scans, once you get a second opinion from a legitimate center of excellence, it becomes much easier to push back and demand better care here at home.

The doctor likely suggested radiation because they probably feel it's the most humane option for your mother, given her age and overall health. Look, you have to face the reality—as hard and painful as it is—that when dealing with a sarcoma at this stage, even in younger patients, we aren't talking about a "cure." We are talking about extending quality of life and focusing on palliative care. The doctor likely believes a radical surgery would either kill her or leave her living in an agony that no human being should ever have to endure. That’s why I suggested getting a second opinion from specialists; if nothing else, you'll know you did absolutely everything humanly possible for her on this planet. And please, don't start stressing about massive medical bills right away. In situations like this, you have to take it one step at a time.
Here is a link to Dan Farber. You can reach out to them via email.

Today I was back at Petrov with my mom, and we got a second opinion stating that "primary uterine sarcoma bleeds and rarely metastasizes to the gluteus." My mother hasn't had any bleeding, nor is she in pain there—her uterus looks fine. This essentially means it isn't a "primary uterine sarcoma with pelvic metastasis," which was the diagnosis she received at that private clinic a while back. The truth is, a few years ago, she just tripped at the entrance to the beach and banged her backside—specifically that iliac bone—and the pain has persisted ever since. Back then, the doctor wouldn't even order imaging because they claimed "the trauma is in the past," and that was that... but it kept hurting, though she figured it was just old age. Then, about six months ago, she started limping, so I drove her to a private clinic for an MRI. They happened to find an enlarged uterus during the scan, and since then, everyone has been convinced it’s all about the uterus. But the actual pain is in her hip; she can't sit or lie down without agony, so she's taking Tramal. It wasn't even that bad initially—she was just limping, didn't even need a cane—but last week, while we were at another private specialist, a nurse reached out to help her up from the exam table, she slipped right onto that right leg, and now she can't walk a step without a heavy-duty walker... anyway, the gynecologist at Petrov recommended that once we get the tissue samples from the hip, we head to an orthopedic surgeon for further treatment.... honestly, I just wanted to say: why does every single injury have to be linked to "cancer or metastases"? Maybe it isn't that. Maybe it's just that after all the radiation and chemo, you end up with "real cancer"... I'm not saying my mom definitely doesn't have some undiscovered metastasis (God forbid that's the case), but everywhere we go, everyone jumps straight to CANCER—it's cancer this, it's metastases that, it's this or that. But maybe it's just a simple, untreated injury from trauma—even the top specialists occasionally mistake a sarcoma for a sports injury... anything is possible... and yet, even now, six months later, I still don't know exactly what's wrong with my mom... the testing never ends... the only thing is, the uterus hasn't grown during this time; if the UZV is accurate, it actually shrank by a centimeter or two... etc.....☕

Megan Williams6, I already explained to you that sarcomas are incredibly rare tumors. When you're dealing with a rare disease, you're usually looking at one of two scenarios: either there’s an agonizingly long wait for an accurate diagnosis, or the diagnosis is flat-out wrong from the start. On top of that, anyone battling a rare condition hits the same brick wall—either the treatment doesn't exist, or if it does, the price tag is astronomical. Given that, it's highly unlikely your mother would be cleared for such expensive therapy unless we can definitively prove she's sick and that this illness was actually triggered by previous medical treatments. It is possible for new primary tumors—usually carcinomas—to develop as a secondary consequence of treating other primary cancers, but that process typically takes about a decade to unfold.
It's also worth noting that sarcomas frequently crop up at sites of physical trauma, like a heavy impact, a break, or a deep laceration. So, it is entirely plausible that everything actually started with that damn fall, and things just steadily progressed until they reached the state we're seeing today.

Yeah, that’s exactly it. Regardless of how we look at it, it seems like Mom is going to have to go through with the surgery (and maybe it's better not to mention the leiomyoma just yet). If everything goes according to plan, they’ll likely need to install some kind of artificial joint or implant, though I honestly have no idea who the best specialist would be or how much risk is involved—even if it seems like "half the city" does this procedure. I really need to do some digging there. But first and foremost, we’ve been waiting a week now for the biopsy results from the tissue taken from her femur... hopefully, those results will finally give us some clarity. Ideally, that analysis should show whether it's malignant or not. Thanks again, and all the best.🤷

A private clinic performed two biopsies on my mom's hip, and they sent the tissue samples over to Mercy Hospital for analysis. They were supposed to be ready by last Monday, but I’ve already been down there five times and still nothing (trying to reach them by telephone is a nightmare). Apparently, they need to send the results via fax.... Does anyone know if they can just email the results directly to me if I send them my confirmation and order via email? I desperately need these findings to move forward with her treatment.... Does anyone know which email address I should use to check on the status and ask if they can send them straight to me? Thanks so much.🤷

Megan Williams6 said:A private clinic performed two biopsies on my mom's hip, and they sent the tissue samples over to Mercy Hospital for analysis. They were supposed to be ready by last Monday, but I’ve already been down there five times and still nothing (trying to reach them by telephone is a nightmare). Apparently, they need to send the results via fax.... Does anyone know if they can just email the results directly to me if I send them my confirmation and order via email? I desperately need these findings to move forward with her treatment.... Does anyone know which email address I should use to check on the status and ask if they can send them straight to me? Thanks so much.🤷

You could try Googling the pathology department's email and asking nicely, though honestly, that’s rarely how they operate. Even if you manage to get through, you’ll probably have the physical papers in your hands before you ever see them in your inbox.
As for the surgery and the hip replacement, that kind of thing is handled at the main hospital in the city area.

Thanks for the advice. It looks like I’ll have to head back to that clinic for more tests anyway. I already $20 wasted money on parking just to get those results (it was a red zone area) and for what? Who knows what they'll actually say on the reports... maybe more bad news. If that happens, I’m seriously going to see my doctor to ask for a referral to a psychiatrist. I just can't deal with this anymore. At least if they could prescribe something to calm me down, because what I've been dealing with lately—this "so-called normal" feeling—is something I moved past a long time ago...🙂😵

I headed up to Mercy Hospital to pick up my results myself. They claim they faxed them over back on June 1st, but nothing ever showed up on my end—though I finally have them in hand now. To be honest, the report is pretty much a wash because the sample was considered "insufficient." Now they’re suggesting I either redo the puncture using a "thicker" bone marrow needle... or just go straight to a bone biopsy if they can't get enough material through aspiration. It's enough to drive a person crazy... then again, I feel like I've already lost my mind, so what does it matter? As for what they actually found, the report mentions that several smears showed clusters of spindle-shaped vimentin-positive cells, but desmin-negative cells. That's basically all there is to it. Now I just have to figure out my next move...🤷

Megan Williams6 said:True, but where can a person even turn when everything costs so much... if it really is a sarcoma, I’ve read that surgical removal is usually the best bet, even if there's a fifty-fifty chance of it coming back. Still, one oncologist is suggesting radiation therapy instead (though I've heard sarcomas aren't particularly sensitive to radiation or chemo?...)

Here’s an article for you, though I’m pretty sure you’ve already done a ton of your own digging.

Yeah, it’s just hard when you aren't 100% certain it's actually a sarcoma... the thing is, my mom's diagnosis still hasn't been fully confirmed. If it turns out to be a uterine sarcoma, it really should have grown since January 11th of this year, because those things tend to spread fast—but hers actually seems to have shrunk instead. I'm talking about the uterus here, though the one in her femur stayed the same size or maybe even grew slightly (depending on whether you look at the MRI or the CT, so it really depends on who's doing the measuring)... right now, we're just waiting on the orthopedic specialist and an ultrasound with Doppler. Anyway, more than half of what I'd call the "worst year of my life" has already passed... I think I'll need to ask a psychiatrist for something to help me stay calm, because I am completely falling apart. Best regards!

Does anyone happen to know where I could get this "biopsy"—specifically a cytological puncture—done? I also need an ultrasound with Doppler. A private clinic tried the puncture, but it was unsuccessful; they said the needle was too thin, apparently, and there wasn't enough of a sample according to the folks at Mercy... and I already paid $267....🤷

Uh. 😢 Does nobody here understand standard medical practice? It makes zero sense to me why they didn't just hospitalize her and get everything handled at once instead of this slow, agonizing torture. And honestly, even a general practitioner could prescribe something for the pain right off the bat. Hang in there. 🙂

Look, just head straight to Mercy Hospital. If we're actually dealing with a sarcoma, you want the absolute top-tier specialists who handle that stuff—they're the best of the best. Once you get a diagnosis at Mercy, trying to transfer her over to the main specialists will be an uphill battle. It’s much easier to make that move now while things are still being figured out.

Alright, I’m about to say something you probably won't want to hear, but please—just read it anyway.

We’re talking about an 83 or 84-year-old woman who is clearly incredibly sick. Why not make her final days a little easier? Instead of putting her through all these painful, invasive diagnostic tests, why not focus on getting her solid pain management—if she’s hurting—and just making sure this last chapter of her life is as comfortable and peaceful as possible?

Even if you managed to get an absolutely perfect diagnosis from Superman himself, what do you really think changes? Is your mother going to start some miracle treatment and be totally cured in six months? That doesn't feel like a realistic scenario at all... It seems much more likely that she’ll be battling this illness—whatever it turns out to be—until the end. Honestly, the most humane thing would be providing high-quality palliative care to help her manage the effects of the disease (and just plain old age).

Look, I know this isn't what you want to hear, but I've been following this thread from the very beginning, so I figured—I might as well say what I think, even if I end up being crucified for it later. If I'm lucky enough to live to 83, I know for a fact I wouldn't want to be dragged through endless biopsies and stuff... I'd much rather just have my peace and someone to talk to. 🙂

Jose Miller3 said:Alright, I’m about to say something you probably won't want to hear, but please—just read it anyway.

We’re talking about an 83 or 84-year-old woman who is clearly incredibly sick. Why not make her final days a little easier? Instead of putting her through all these painful, invasive diagnostic tests, why not focus on getting her solid pain management—if she’s hurting—and just making sure this last chapter of her life is as comfortable and peaceful as possible?

Even if you managed to get an absolutely perfect diagnosis from Superman himself, what do you really think changes? Is your mother going to start some miracle treatment and be totally cured in six months? That doesn't feel like a realistic scenario at all... It seems much more likely that she’ll be battling this illness—whatever it turns out to be—until the end. Honestly, the most humane thing would be providing high-quality palliative care to help her manage the effects of the disease (and just plain old age).

Look, I know this isn't what you want to hear, but I've been following this thread from the very beginning, so I figured—I might as well say what I think, even if I end up being crucified for it later. If I'm lucky enough to live to 83, I know for a fact I wouldn't want to be dragged through endless biopsies and stuff... I'd much rather just have my peace and someone to talk to. 🙂

Everything you said is true, but unfortunately, our healthcare system is buried in red tape. Without a concrete diagnosis, it is nearly impossible to access critical rights related to palliative care. For example, there is zero chance she’ll get approved for home oxygen without a malignant diagnosis; they even give you a hard time if it isn't primary lung cancer or COPD. That's why you need that specific diagnosis, as frustrating as it is, regardless of how old she is or what symptoms are expected at her age.

I feel terrible even bringing this up here, but I suppose I’ve already crossed that line... I, as her son, just want to know what my mother is actually dealing with. Right now, we are just waiting on a tissue biopsy that we had performed and paid $267, but it wasn't successful. The needle was too thin. If you saw my mom, you wouldn't think she was elderly at all; she's got 80% of her teeth left (we were actually getting ready for a dentist visit late last year, but anyway...), and she used to dance like "Veljko Rogošić," moving effortlessly wherever she wanted (she used to dance at local community centers and social clubs)—and honestly, she looks so fresh and youthful right now—in other words, there is "hardly any trace of an old woman" about her. When we go out, people constantly mistake me for her husband. Anyway, I don't want to burden anyone with my problems, but hopefully, we will find out what kind of growth is on that femur of hers soon... they keep confusing it with a leiomyoma, which 90% of women her age have, and that hasn't grown for 6, or rather 7 months, it actually shrank by 2 cm (maybe that's because of "all those vitamins she's been taking since the discovery." Every day I go grocery shopping and fill the trunk with beets, carrots, apples, and everything else to make her smoothies—basically blending as much fruit and veg as possible...) because, truly, everything comes down to the stomach. What you put in your stomach is how you feel. There is a direct connection. You drink alcohol, eat a poisonous mushroom, and you die... so, I believe people should focus their main efforts on what they ingest. That is the crux of it. You have to strengthen the immune system; that's the whole point. The body heals itself; you just have to know how. Some people realize this, and some don't. I reached my own understanding by experimenting on myself a long time ago... through fasting (eating and drinking only raw fruits and vegetables), I managed to lose 77 lbs, and that feeling of "HEALTH" is indescribable... no more leg pain, in fact, my legs didn't just want to walk, they refused to stop. Fatigue? It didn't exist for me back then. I knew I could walk 19 miles miles a day without feeling tired or even "ready to lift a single brick"—my body was essentially consuming itself, and I felt it as a "fantastic sensation"—it was as if all the toxins were being flushed out; you become tireless, hunger completely vanishes, so when I was running through Central Park, the smell of grills from people cooking meant absolutely nothing to me; it actually smelled repulsive. I ate raw leafy greens and enjoyed them, raw carrots, drank fruit smoothies, and that was it. I was a free man, independent of food, alcohol, and cigarettes, possessed by inexhaustible energy. But everything comes to an end... after summer came autumn, and I slowly started returning to "conventional food," smoking, and drinking, and well, here we are. I could write a novel about it, but I don't want to be tedious. I am starting a similar endeavor again these days, though this time I need to drop 132 lbs, which should go easily in 3 or 4 months. The only thing hindering me right now is my mother's illness... but considering that in 2 or 3 days I'm heading to get an MRI on my knee, which has been hurting for over a year—and it certainly isn't from an injury, but likely some "more serious" condition—mother and I will have to settle for a "shared diet"... "or a shared grave." There is no reason to fear death, really. Why? Because I was already dead before I was even born....😉

I should also mention that I’ve experimented with fasting about ten times now, and the result was always identical—the less food in my stomach, the more energy I felt. The weight just melted away instantly... and I almost forgot to bring up water. Water is truly the most vital element on this planet. It needs to be clean if you're drinking it, but beyond that, being *in* it is what matters. Swimming, wading, just staying submerged—the longer you spend in the water, the better. It draws everything out of your system, and you really need to lean into that. Especially the ocean. Anyone lucky enough to have access to the sea can drastically extend their life and ease their symptoms, even when facing the most malicious illnesses... though explaining that to people is a struggle. It isn't easy for those of us stuck on dry land dealing with heavy pain to find our way there, but it’s worth the effort, even if you have to get into the water in a wheelchair. I actually knew a gentleman once who was in that exact position—within two months, you wouldn't have recognized him. He started getting out of the water all on his own by holding onto a handrail, whereas before, he needed three people just to support him...🤷