Osteolysis: Possible pelvic bone tumor and potential uterine Leiomyosarcoma

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...😕

My spouse's grandmother dealt with uterine prolapse—which eventually required surgical removal—and honestly, the whole situation was quite a saga. The woman is well over 85, and to make matters more complicated, they discovered she had a weak heart during the process. She actually had to get a pacemaker first, then about six months later—just a few months ago, really—she underwent the hysterectomy. Everything went remarkably smoothly, especially considering she's naturally prone to low blood pressure in the first place.😉
The procedure took place at Mercy Hospital.
A hysterectomy is, after all, a very common occurrence for women in that age bracket.

Angela Wright said: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.

I totally agree. This isn't something you just rush into; you need to sleep on it and get multiple consultations before making a call this heavy. It’s especially tricky because they're planning to tackle two things at once: removing that tumor and dealing with another one on the pelvic bone that's pressing against the hip joint. Since that one is a bit larger, it's basically two surgeries rolled into one. One private clinic actually tried to force my mom into immediate hospitalization—they wanted to whisk her straight to the operating table at the main hospital! We barely escaped that. Mom actually had to sign paperwork refusing the admission just so they'd let her come home.... At the end of the day, you have to be ready for surgery, both physically and mentally. You have to settle your affairs, you know? Just in case. Nobody is saying she's refusing the surgery, but you have to be prepared. This is one of those "life-altering decisions." Plus, she still needs more tests, a biopsy, and a full pathology report to be 100% sure what they're dealing with before deciding to pull the trigger and prep for the big day...🤷

So, I was wondering—if someone dealing with osteolysis starts on something like > or >, say they're working with a private specialist who handles the IV treatments, does that mean they can skip the surgery to cut out the "osteolytic mass"—you know, that tumor encasing the bone? Or is the drug itself enough to stop the bone from breaking down and actually trigger regrowth, making the whole surgery unnecessary?

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.

Thanks for the reply and the recommendation. Where could I go in Indianapolis to get a PhD analysis and a tissue biopsy done urgently (perhaps privately)?

I’ve heard there’s a medication for Leiomyosarcoma called "Yondelis," but it’s incredibly expensive and almost impossible to track down here in the States. I wanted to ask if anyone knows how it's typically administered—is it given before surgery to shrink the tumors first, or is it used after the tumors have been removed? My mother isn't really a candidate for surgery... she's getting older, and the procedure would likely be too much for her body to handle. We're really hoping to find something that can block or reduce the tumors if that's an option...😕

I have a question—my mom had an MRI that showed an expansive lesion in her uterus without infiltration, and after an ultrasound, her gynecologist initially said it was just a uterine "leiomyoma" and everything seemed fine. However, a few days after her CT scan, the radiologist suggested that, pathomorphologically speaking, it likely corresponds to a "Leiomyosarcoma." I'm wondering what the term "pathomorphologically" actually means in this context, and which imaging test is more effective for this kind of diagnosis: MRI or CT? Thanks.

So, when they say the pathology points toward Leiomyosarcoma—it essentially means that certain characteristics seen on the CT scan don't quite align with the typical appearance of a standard leiomyoma, which naturally raises the suspicion of Leiomyosarcoma.
This doesn't necessarily mean it is definitely Leiomyosarcoma, but it does necessitate further investigation—primarily through surgical intervention to obtain a tissue sample for PhD analysis.

An MRI actually offers superior soft tissue resolution compared to a CT; because of that, it holds the advantage when diagnosing pelvic tumors—especially regarding staging, or determining how far the disease has spread.
On the other hand, a CT has its own merits due to its spatial resolution, but ultimately, all these radiological methods are complementary—meaning they work together to provide a full picture—and every single detail is weighed when deciding on the course of treatment.

Megan Williams6 said:I’ve heard there’s a medication for Leiomyosarcoma called "Yondelis," but it’s incredibly expensive and almost impossible to track down here in the States. I wanted to ask if anyone knows how it's typically administered—is it given before surgery to shrink the tumors first, or is it used after the tumors have been removed? My mother isn't really a candidate for surgery... she's getting older, and the procedure would likely be too much for her body to handle. We're really hoping to find something that can block or reduce the tumors if that's an option...😕

Yondelis is a sophisticated drug, but it hasn't been officially approved for general use here yet. This means it can only be obtained if an oncologist prescribes it, and then that proposal has to go before a hospital board for approval. If they greenlight it, they perform an "interventional import," where the entire cost—including shipping and customs—is dumped onto the hospital's budget. That’s how it works on paper, but in reality, it's a mess. Often, just one dose of Yondelis eats up a massive chunk of the funds a hospital has set aside for other medications and equipment. Back when Milinović was in charge, they couldn't even transfer their own funds into the hospital account to buy drugs. I'm not sure how things stand now, though.
Generally speaking, regarding sarcomas, surgical removal remains the gold standard whenever it is physically possible. Yondelis isn't a magic bullet for every type of sarcoma. In my view, its primary indication is when metastases are already present. For cases like this, it is best to handle everything within a major hospital system; that's where you find the highest concentration of patients with these specific diagnoses. Since we are dealing with such a rare tumor, the doctor's experience is absolutely critical. You should head to a major center like the Mayo Clinic or a top-tier facility like Johns Hopkins.

I want to thank Angela Wright for the support; you’re absolutely right that this isn't just some "women's issue." My mom is dealing with it in her pelvic bone too, which is putting her hip joint at risk—that part has nothing to do with gender. Her previous scans suggested a uterine sarcoma, along with an expansive, infiltrative lesion in her right iliac bone where the etiology hasn't been established yet... Or, the other theory is that it's an osteolytic lesion, but that they aren't actually related—meaning the myoma could have been there forever, which most women deal with anyway. Both my mom and I are terrified of any kind of surgery, partly because of her age, but also because she’s still mobile, even if she limps. If she ends up stuck in a hospital bed, who knows if she'll ever stand on her own two feet again. But if that biopsy—the one needed for the PhD analysis—has to be done right on the operating table, then we’ll just have to brace ourselves for that... even if they might be able to take a sample from the side using a needle.😕

Megan Williams6 said:I want to thank Angela Wright for the support; you’re absolutely right that this isn't just some "women's issue." My mom is dealing with it in her pelvic bone too, which is putting her hip joint at risk—that part has nothing to do with gender. Her previous scans suggested a uterine sarcoma, along with an expansive, infiltrative lesion in her right iliac bone where the etiology hasn't been established yet... Or, the other theory is that it's an osteolytic lesion, but that they aren't actually related—meaning the myoma could have been there forever, which most women deal with anyway. Both my mom and I are terrified of any kind of surgery, partly because of her age, but also because she’s still mobile, even if she limps. If she ends up stuck in a hospital bed, who knows if she'll ever stand on her own two feet again. But if that biopsy—the one needed for the PhD analysis—has to be done right on the operating table, then we’ll just have to brace ourselves for that... even if they might be able to take a sample from the side using a needle.😕

They'd likely go for it, but honestly, the best move would be to just cut out whatever it is entirely.

I was also wondering if it's possible to take a tissue sample from the uterus for a PhD analysis using something like a needle or a similar method, without having to undergo surgery or being cut open on an operating table, just so we can finally figure out what we're actually dealing with.... Thanks so much.🤷

It would probably be best to just remove everything, but I honestly don't know if my mom could survive that. Aside from the uterine sarcoma, she’s apparently "missing" a chunk of bone on her right hip because the tumor ate right through it. They say there's only about 4-6mm of the "acetabular roof" left, which means her entire hip joint is at risk of collapsing. If that's the case, how on earth are they supposed to take out the tumor while actually saving any bone? It’s all getting incredibly complicated... I just don't know, 🤷

Megan Williams6 said:It would probably be best to just remove everything, but I honestly don't know if my mom could survive that. Aside from the uterine sarcoma, she’s apparently "missing" a chunk of bone on her right hip because the tumor ate right through it. They say there's only about 4-6mm of the "acetabular roof" left, which means her entire hip joint is at risk of collapsing. If that's the case, how on earth are they supposed to take out the tumor while actually saving any bone? It’s all getting incredibly complicated... I just don't know, 🤷

Look, regarding this and your previous question, you really need an answer from a surgeon who specializes specifically in these kinds of cases. There are too many variables at play to give you a ballpark estimate here; it requires deep expertise and serious experience. In medicine, when things get this heavy, doctors weigh the risks against the goal of maintaining quality of life—basically, how much time can we give them where they aren't suffering? One thing is certain: if they can't remove as much of the tumor as possible (ideally all of it), her chances of a decent quality of life drop significantly.😢
Given how often critically ill patients in poor general condition undergo massive, complex surgeries, I think your mom stands a good chance of pulling through. As for the bone issue, depending on the specific location, there are prosthetic implants designed to replace diseased bone—similar to what’s done for osteosarcoma—so that could very well be a viable option for her.

Angela Wright, you have such a beautiful soul that I am practically paralyzed with happiness just knowing people like you exist. Honestly, I used to think someone like that was impossible... You radiate such positivity that I don't even know how to put it into words... It all comes down to one thing: I love my mother so deeply that I can't bear the thought of her passing while I'm still here... And because we are so close to that diagnosis, I feel like I’m walking along the edge of the Petronas Towers—the highest point imaginable—just waiting for a gust of wind to finally carry me where I need to go... Life would be so wonderful if this monster hadn't attacked my mother. Just last year, we were swimming in the ocean and enjoying everything; life was perfect, and then this happened. If only it had targeted me instead (and actually, I have an MRI scheduled for June 10th), but instead, it went after the person I love most in this world—my mother... As for me, I'm just done. I am so incredibly angry that even a hundred cancers couldn't break me. I almost want to call them out: "Come on, come on, I'm right here! Let's settle this." Those cowards can't touch me; I'm practically waiting to face them just so I can destroy them myself... But it's a completely different story when you're the one fighting it, or when it's someone you love—people just don't want to listen. If it ever comes for me, I plan to starve it out... So, ask me more if you want... through fasting, the body consumes everything—first the foreign invaders like tumors, then the fat, then the muscle, and everything else it can find. I don't mean to be tedious, but I know what I'm doing, though it's hard to convince my mom to follow suit... she's 83 years old... and she doesn't exactly take orders from me anyway, so implementing a different diet is tough. We're doing a fruit and vegetable blend three times a day to boost the immune system and all that...🤷

Megan Williams6 said:Angela Wright, you have such a beautiful soul that I am practically paralyzed with happiness just knowing people like you exist. Honestly, I used to think someone like that was impossible... You radiate such positivity that I don't even know how to put it into words... It all comes down to one thing: I love my mother so deeply that I can't bear the thought of her passing while I'm still here... And because we are so close to that diagnosis, I feel like I’m walking along the edge of the Petronas Towers—the highest point imaginable—just waiting for a gust of wind to finally carry me where I need to go... Life would be so wonderful if this monster hadn't attacked my mother. Just last year, we were swimming in the ocean and enjoying everything; life was perfect, and then this happened. If only it had targeted me instead (and actually, I have an MRI scheduled for June 10th), but instead, it went after the person I love most in this world—my mother... As for me, I'm just done. I am so incredibly angry that even a hundred cancers couldn't break me. I almost want to call them out: "Come on, come on, I'm right here! Let's settle this." Those cowards can't touch me; I'm practically waiting to face them just so I can destroy them myself... But it's a completely different story when you're the one fighting it, or when it's someone you love—people just don't want to listen. If it ever comes for me, I plan to starve it out... So, ask me more if you want... through fasting, the body consumes everything—first the foreign invaders like tumors, then the fat, then the muscle, and everything else it can find. I don't mean to be tedious, but I know what I'm doing, though it's hard to convince my mom to follow suit... she's 83 years old... and she doesn't exactly take orders from me anyway, so implementing a different diet is tough. We're doing a fruit and vegetable blend three times a day to boost the immune system and all that...🤷

I sent you a DM so we don't take this thread off-topic.

Does anyone here have firsthand experience dealing with this condition? Also, which oncologist in the US would you recommend as the absolute best and most experienced for this specific issue? Thanks in advance.

Actually, I’m a bit confused here: can "osteolysis" and "leiomyosarcoma" really be the same thing? They seem like two completely different diagnoses to me—"osteolysis" refers to bone breakdown (demineralization), whereas "leiomyosarcoma" is a tumor of the smooth muscle or soft tissue... When it comes to the lesion on my mom's pelvic bone, one group of doctors says it's one thing, while another set says it's something else entirely... Since the treatment would likely be totally different depending on which diagnosis is correct, I'm just trying to make sense of it all....😕

Essentially, osteolysis is just the term used to describe any kind of bone breakdown caused by tumor growth.

In this specific instance, osteolysis of the pelvic bone could stem from a couple of different things—it might be due to the primary tumor spreading directly (meaning the sarcoma itself is eating away at the bone as it expands), or it could be the result of a metastasis reaching the pelvic bone.