Leiomyosarcoma: Here’s what you need to know about this rare form of cancer.

Dr. Rich:

In my last video on fibroids, I mentioned the rare but significant risk of something called fibroid cancer, also known as leiomyosarcoma. How common is it and how much do we need to worry? Well, that’s what we’re going to unpack in today’s video.

Don’t have time to read this blog post? Watch it here instead!

Dr. Rich:

Hi, I’m Dr. Rich and my passion is to empower every woman with practical knowledge about the world of women’s health. Cancer is a hard word and it makes all of us anxious and uncomfortable. So I’m bringing my esteemed colleague and good friend from Orange County via Zoom, Dr. Marc Winter, to help provide accurate information regarding leiomyosarcoma. Welcome, Marc.

Dr. Marc Winter:

Thanks Rich. It’s a pleasure to be here. And cancer is not my favorite topic to talk about, but I think it’s a necessary topic. And I think the more people know the more information, the better we can all deal with this.

Dr. Rich:

So tell us a little bit about yourself and your practice out in California.

Dr. Marc Winter:

Sure. I am a gynecologist in Southern California. I’m part of a large group called Orange Coast Women’s Medical Group. We’re a part of Hope Clinic, which is one of the major hospitals here. I also serve as medical director of benign gynecology for Hope’s Women’s Health Institute in Newport Beach in Irvine, California. My interests are really minimally invasive gynecologic surgery, robotic surgery, and that’s kind of where I find my subspecialty and at this point.

Dr. Rich:

And how much teaching are you doing these days? You did a lot and we both do a lot as mentor sites and epicenter sites for training. How much of that are you doing now?

Dr. Marc Winter:

So prior to COVID, we were still very active as far as a case observation site where people would come in and spend the day with me and watch surgeries. And then I did a fair amount of traveling as far as speaking different locations and doing some teaching around the country and occasionally out of the country. Since COVID hit, life has changed.

Dr. Rich:

It has.

Dr. Marc Winter:

We’re trying to do what we can virtually. We’re actually looking at trying to figure out what kind of system we can install in the main hospital I’m at to make that more feasible. But I’ve been doing some virtual events periodically over the last few months and speaking at a couple of virtual conferences. So a new way of life.

Dr. Rich:

Well, there’s this new concept for surgical training, telementoring, where there’s actually a large tower that goes into the OR and records the entire OR and also plugs into the surgical camera. And you can actually virtually mentor or virtually do a case observation. Have you done any of that? Has anybody approached you about that?

Dr. Marc Winter:

Yeah, actually a couple of people have approached me about that. I have not done any yet, but that’s what I was kind of referring to. There’s a couple of different systems we’re looking at that will enable that to be possible. So I’m looking forward to that in the near future.

Dr. Rich:

Well, necessity is the mother of innovation, right?

Dr. Marc Winter:

Yeah. Yeah. And in some ways, some of that’s going to be better. I mean, it seems like the there’s you miss that personal contact and it’s nice to be there yet you can still have a large impact and not have to leave and now, I think in some ways it’s going to be better.

Dr. Rich:

I think so too. Well, I really appreciate you taking the time and joining us from across the country to talk about this very important topic. We have done a prior video, which you can check out here on benign fibroids and you and I have actually done another talk on this cancer fiber, the leiomyosarcoma on a separate podcast, which you can check out in the section below. Let me ask you how rare or how common is leiomyosarcoma or cancer fibroid?

Dr. Marc Winter:

Yeah, that is a great question. There are ranges as far as how common is it really what we thought in the past. Let me go back a little bit. Pre-2013, we thought it was extremely rare. Maybe one in several thousand, one in 10,000 seemed to be the number that most people fixated on as far as the more serious cancers, these leiomyosarcomas. And then there was a case that was kind of the big incident case or sentinel case, where there was a lot of buzz after that. And the FDA actually looked at that and held sessions to try to figure out how common was this and was the instrumentation we were using to remove fibroids proper, which we were using what’s called a power morcellator, which is an instrument with a circular blade that will cut tissue like this into thin little strips so you can get big things out through little incisions.

Dr. Rich:

So that would allow you to do a minimally invasive surgery through little tiny incisions, and yet still be able to remove very large specimens, very large fibroids.

Dr. Marc Winter:

Exactly. And be able to remove these large specimens in a way where people could go home the same day and recover quicker and get back to work quicker and feel better, much quicker. Plus, and we’ve done studies, we published one on hysterectomy. We showed that the complication rates doing it that way were actually lower. And that we got better results doing things in that fashion.

Dr. Rich:

So what did the FDA do about this power morcellator device?

Dr. Marc Winter:

Yeah, so they looked at it, they looked at a number of studies. I believe the big, the number of studies at the time was about nine studies. And they came out with numbers of approximately one in 350 of patients being operated on, had a cancer.

Dr. Rich:

That seems way off.

Dr. Marc Winter:

Yeah. And one in 495 had these bad cancers, this leiomyosarcoma. Now, even though these numbers are much higher, they’re still not super high, but it kind of made everybody pause. I had seen in my career, I think one of these after thousands of hysterectomies or myomectomies, and as a one surgeon anecdotally, you can’t really go by that. You need to go by studies. But what these studies failed to look at is all the women sitting out there who chose other types of procedures. You know, we have all these shrinkage procedures.

Dr. Marc Winter:

The most common is uterine artery embolization, where radiologists will catheterize the blood vessels leading to a large fibroid and put something in the blood vessels to occlude them so that the fibroids will shrink. There are some other procedures using a focused ultrasound with MRI guidance or cauterizing or freezing these fibroids to have them shrink. So all these people that chose alternate routes of treatment were not included. People who chose expected management, no surgery were not included. And there’s a number of patients we have with fibroids who say, Hey, they’re not growing significantly. They don’t bother me. I’m just going to leave it alone.

Dr. Marc Winter:

And then the big number is there is a lot of women out there that have fibroids that don’t know they have fibroids. We know, depending on the population, fibroids occur in 50 to 80% of women depending on the population. So this is a huge number. So when we talk about this one in 495 of these bad cancers, that’s not how often fibroids are actually cancerous. But of women choosing to have certain procedures, these are the numbers that came up.

Dr. Rich:

It seems like they’re losing a lot of cases from the denominator of the equation, based on what you’re saying, like people not knowing they have fibroids the studies only including cases with patients who had a fibroid or a cancer. And because it’s a pretty big difference from one day to say that fibroid cancer is one in 2000, and then the FDA comes out with a study and says all of a sudden it’s one in 400.

Dr. Marc Winter:

Right. Right. Exactly. Exactly. So the FDA, actually, we looked at that in 2017 and they looked at 23 studies at that time. And it’s interesting. They came up with a range of how often a leiomyosarcoma is there. And they said it was anywhere from one in 495, the original number to one in 1,100. But again, this is 23 studies looking at certain aspects, none of these were population-based studies looking at a population saying, Hey, we’re going to check 10,000 women and see how often how many of those have fibroids and of those, how many have a leiomyosarcoma. So they weren’t done in that way. But it just shows you what a range there are. There’ve been some other studies done. I think Bell Parker, who is well-known for his work in fibroids quotes a number of one in 3,000 as the incidence of leiomyosarcoma.

Dr. Rich:

You and I, having done thousands of cases, I’ve had two leiomyosarcomas, you’ve had one. Everywhere where we’ve had the privilege of lecturing and educating, we take the opportunity to survey the audience. And that seems to be pretty congruent that most surgeons are seeing these things, most commonly one in 1,000, probably more realistically one in 2,000 or even more than that. But what did the FDA end up doing about this device that would assist in removing the fibroid through tiny little incisions?

Dr. Marc Winter:

So the FDA put, they didn’t outlaw or remove the device from the market. They did put a black box warning just to warn doctors about the potential harm of the device, which is an interesting thing. And I’ll get that in a minute, but they warned about the harm of the device and they suggested that women near menopause, so roughly 50 and older, think twice about having this device used with their surgery and that for younger women, that we should thoroughly counsel them about options and make sure that it’s a mutual shared decision between the patient and us as to which way to take out the fibroid.

Dr. Marc Winter:

As for us, it meant talking about alternatives to using a morcellator and we actually have come up with some really good alternatives either, well, I think most of us now will put the fibroids in an enclosed environment. We actually put a containment pouch inside the abdominal cavity, where we can put the fibroids in that pouch and then remove the fibroid within the pouch either by pulling the tissue up and cutting it into little pieces. But that cutting the tissue is all remains in that continued pouch so it can’t get thrown all around the body inside. And the other way is to still use a power morcellator. But again, within this containment pouch, putting a camera in from the side, kind of a tricky way so we can look under direct visualization and still use it, but either way, keeping things in an enclosed environment. So the FDA actually encouraged using an enclosed environment to remove fibroids if it was being done in a minimally invasive way.

Dr. Rich:

And what was the net result of this black box warning for your average practicing physician? Did they have access to the morcellator or pretty much it went away?

Dr. Marc Winter:

Yeah, pretty much went away in most places around the country. There are certain areas where it’s still used in certain situations for when fibroids aren’t there or people who have adapted this contained approach. But for the most part it’s gone away. What’s really interesting to me about that is a lot of surgery is being done, how do say? You and I have spent a lot of time because this is our subspecialty and we try to figure out what’s the best thing for our patients. And we’ve taken the time to really learn these techniques. And in fact, we teach these techniques to other physicians. So that’s a difference where a lot of other physicians have said, you know what, I’m just not going to bother anymore. I’m just going to do, go back to doing things as an open procedure with big incisions, like a C-section kind of incision.

Dr. Marc Winter:

So kind of interesting what that did people looked at the net effect of that several years after that went into effect and showed that the rate of open procedures or with the big incisions went up significantly, but the complication rate from hysterectomies went from 1.9% when you look at all major complications, 1.9% to 2.4%. So that 0.5%, that doesn’t sound like that much. 1.9 to 2.4. But if you figure there’s approximately 450,000 women having hysterectomies per year in the United States alone, that translates into approximately 2,250 women having major complications that otherwise would have been avoided had we still used the techniques we were using pre-2014.

Dr. Rich:

So you’re saying that for a lot of providers, it was too much of a challenge to learn a new technique and in their hands, the safest thing to do was just to do an open incision. And although well-intentioned the black box warning, the net effect of that was actually, we increased complication rates nationwide simply by virtue of the fact that open surgery is associated with more complications than minimally invasive surgery.

Dr. Marc Winter:

Exactly. And that’s been probably the biggest frustration of this whole thing, you know? Yeah. We figured out ways, which I think a lot of us will say the ways we figured out are actually better than what we were doing before, as far as refining the minimally invasive techniques, but for a lot of women who aren’t offered that, yeah, we’re doing more harm than we were before. And that’s very frustrating. I know for you, it’s frustrating. And me, it’s frustrating for those of us that try to teach as many people as possible to become better at minimally invasive techniques so they can offer that to more patients.

Dr. Rich:

And you use the word harm. And I think it’s important to kind of clarify where the harm is because when the FDA statement came out, there actually was a great deal of confusion. Patients, a lot of them thought that somehow the power morcellator itself caused cancer. But the reality is that there’s rare cancer. It’s called a sarcoma. It’s a very bad type of cancer in the sense that survival rates are very low. We also do not have great treatments for sarcoma and leiomyosarcoma. And the unfortunate fact is that if someone has that diagnosis, they have a very low survival already. And that has nothing to do with the method in which it’s removed. The issue, the harm comes in when you use this device and you remove the fibroid in pieces. And as you mentioned, the pieces can then fall down inside the abdomen and it would spread the disease. So it’s already a bad disease, but then it actually becomes a little bit worse because it’s spread throughout the abdomen.

Dr. Marc Winter:

Yeah, exactly. And it’s one of those things, even there’s going to be some spread of cells just by doing any kind of surgery. And these devices in a non-enclosed environment can spread the tissue. In fact, you can get I’ve seen this a couple of times something called leiomyomatosis, where pieces of fibroid will actually implant into that abdominal cavity and will grow and added to sometimes that can be a very challenging condition or surgery afterward. So that’s one of the things about these bags I really liked because now we’re not going to see that. But yeah, there were so many misconceptions when that came out that, Oh, the morcellator is going to give me cancer. No, it doesn’t work that way. And if you’re that one in whatever that has that, it’s one of those unfortunate conditions, no matter what you do, because it’s difficult to treat. There’ve been a couple of chemotherapies that have come out over the last few years for some of these cancers. But again, it’s still a very difficult condition to treat completely.

Dr. Rich:

How might a patient know or suspect that they have leiomyosarcoma?

Dr. Marc Winter:

Yeah, that’s difficult because we don’t have reliable blood tests or way of imaging that tells us for sure, whether they’re a sarcoma or not. Fibroids when they grow larger, faster, people used to think, Oh, we’re worried about sarcoma. And that’s true if you’re post-menopausal. That’s a red flag if somebody’s post-menopausal and has a fibroid growing rapidly, that’s a problem. But for the 40-year-old, that’s not menopausal and has rapidly growing fibroid studies have shown no correlation, whether that’s a leiomyosarcoma or a benign fibroid. There’s nothing accurate with MRI. There are some people who’ve who think they see irregularities of the fibroid and have a hint, but even that has not been shown to be reliable. So unfortunately there not a great test to figure out what’s benign and what’s cancerous before doing surgery.

Dr. Rich:

So there’s no way to know, but we do a risk factor-based approach post-menopausal, growth in menopause, certain family history for cancer. We look at the potentially rapid growth LDH-3 isoenzyme, some MRI findings, but none of those independently say yes or no, in fact, even collectively they don’t, but we have to just take all of that data, put it together and decide what the patient’s risk is?

Dr. Marc Winter:

Exactly. That’s the best we can do right now.

Dr. Rich:

So this idea, this fibroid cancer or leiomyosarcoma is a very rare version of a benign fibroid, which is just a growth of smooth muscle tissue in the wall of the uterus. Have you ever had a patient with a leiomyosarcoma with a cancer fibroid? What was that conversation like? And how did you manage that?

Dr. Marc Winter:

Yeah. I had one patient with a leiomyosarcoma. The good news is for as many surgeries as we do the chance of a cancer being present is extremely small. But in that rare situation, it’s something where we were able to get the patient to see a women’s cancer specialist right away. They were treated with chemotherapy, watched very closely thereafter and did well luckily.

Dr. Rich:

Good. And there’s no real good way to diagnose this before you do the surgery. So you just kind of have to have a suspicion. We had a patient who had a fibroid that was growing after menopause, which is unusual. Usually they shrink. And because that was, raised the red flag. Similar to your experience, we were able to get them referred to a cancer specialist who is actually still able to do the surgery in a minimally invasive fashion because it hadn’t grown to an enormous size and they caught it early enough that she did well. Although that’s not always the case because it is a very aggressive cancer.

Dr. Marc Winter:

It helps if you have fibroids and you’re looking for treatment to go somewhere where they do treat a lot of women with fibroids and have a lot of experience because sometimes the best way to figure out what’s going on is to rely on our spidey sense. That sixth sense of figuring out, we don’t have numbers, but sometimes you just get a feeling and you know something’s not right here and can deal with things appropriately that way.

Dr. Rich:

So if a patient had a fibroid and the diagnosis was made of leiomyosarcoma, what would you tell them? How does that counseling process go?

Dr. Marc Winter:

Yeah. Well, I would tell them that one, we’re going to get them the best care right away. We’re going to send them to a super specialist a gynecologic, oncologist or women’s cancer specialist who is experienced in treating these cancers. And that there are various forms of treatment available, either surgery or chemotherapy or combinations, and that the field there’s a lot of research going on with this. And treatments are better than they were 10 years ago and continue to improve. And there’s hope that they’re going to be able to be cured from this.

Dr. Rich:

So it’s very hard to diagnose a leiomyosarcoma or a cancer fibroid before you do the surgery. They’re super rare. There is no test. We can be suspicious based on certain findings or family history, but what do we do, what do you do every day to protect patients that in the super unlikely risk that they had that, I mean, there’s no way to eliminate risks, but how do we minimize the risk as much as we can?

Dr. Marc Winter:

So to help minimize risk when we remove fibroids for every patient, we do it in an enclosed environment. We put a bag inside the abdominal cavity and put the fibroids in the bag, and then we actually can cut these large fibroids into small pieces while they’re in the bag, preventing tissue or cells from spreading within them. And that minimizes that risk for the rare situation where one turns out to be a cancer.

Dr. Rich:

And what was your approach in light of all that we know now in this journey over the last six, seven, eight years as our knowledge has grown around leiomyosarcoma, what would your approach be, or has it changed for a patient that maybe is at a higher risk, maybe menopausal with a fibroid? Is that someone you would offer to remove the fibroid or is that just too risky? Would you suggest at that point, we want to remove the whole uterus so that there’s no risk of spread?

Dr. Marc Winter:

Yeah. So I think that’s where you have to individualize the situation and actually figure out what that risk is. In other words, for the patient that has a newly diagnosed fibroid or a fibroid growing rapidly, I would very much encouraged not to do a myomectomy in that older patient, but I’ll be honest with you. I’ve had some, who’ve had fibroids for a long period of time who just decided that their symptoms finally have got the best of them and nothing’s changed. And I knew they weren’t growing rapidly. I know it’s been there a long time. I counsel them very, we talk in detail about, well, what if it is a cancer? And what are the ramifications? And are we really increasing your risk, frankly? And I let them make the decision. And if they’re willing to take that small risk, I’m still willing to do that in the right situation. So, as I said, you just have to individualize it and be careful.

Dr. Rich:

So having this education platform, what would you say to all of the viewers, what summary would you have as it relates to fibroids and fibroid cancer, and what caring advice would you give to them?

Dr. Marc Winter:

So I would say, I think it’s important to seek care by somebody who’s very experienced dealing with fibroids and fibroid surgery. Somebody who can offer you a minimally invasive option because for the great, great majority, in fact, there are only rare circumstances where that it’s not the best option because we know there’s less complications and a lot less pain and quicker recovery if it can be done that way. Also, that for everybody having surgery, we’re taking precautions just in case you’re the rare person that does have a cancer. And that if that’s the case, we’ve taken those precautions to allow further treatment, to have a better success rate if needed. But luckily, most of the time that’s not necessary. Most of the time these are going to be benign and you’re going to be fine. And hopefully do I say, get back to normal life as quick as possible.

Dr. Rich:

Well, I certainly want to thank you for taking the time and helping us provide up-to-date valuable healthcare information. I know that there’s a need for that. And we really appreciate you taking the time.

Dr. Marc Winter:

Yeah. Thanks Rich. It’s my pleasure. And I think this forum is great and it’s great to be able to talk to lots of people. So thank you for including me.

Dr. Rich:

Well, hopefully we’ll be able to get to see in person soon again.

Dr. Marc Winter:

I hope so. I cannot wait.

Dr. Rich:

So if something that we’ve discussed today has sparked your interest, please go ahead and subscribe and share. Again, a big, thank you for Marc Winter for helping us tackle this difficult topic. If people wanted to get ahold of you, what’s the best way to do that?

Dr. Marc Winter:

Probably the easiest way is through my practice website, which is ocwmg.com.

Dr. Rich:

All right. And that’ll be included in the description section below. Thanks again and tune in next time.