Physician’s assistant and patient advocate Sarah Salem-Robinson is my guest on this episode of the Drugwatch Podcast. On this episode, we discuss Salem-Robinson’s harrowing health journey after she underwent minimally invasive surgery with a surgical tool called a power morcellator.
Her first encounter with a power morcellator was as an OB/GYN physician’s assistant in California. She assisted in the operating room during a hysterectomy and was disturbed when she saw the uterus shredded and sucked out through a tube.
“I watched and I had anxiety and I was shocked at first,” Salem-Robinson told Drugwatch. “But I could also feel the elation in the OR at the time, especially from the GYN surgeon that I worked for because he had a new tool on hand.”
While power morcellators promise quicker incision healing times and less risk of complications such as bleeding and infection, they also come with a much more dangerous risk — the risk of spreading undiagnosed uterine cancer.
Not long after her operating room introduction with the morcellator, Salem-Robinson’s doctors recommended the device for her fibroid removal. They assured her she was cancer free and she would be fine.
Then, a week after her surgery, doctors told her she had leiomyosarcoma, an aggressive uterine cancer. Overall, only about 40 percent of women survive about five years with the disease.
At stage one, 60 to 80 percent may survive five years, according to Salem-Robinson. After a morcellation, that number drops to 10 percent.
On this episode, Salem-Robinson takes us through her cancer treatment process and the health problems she still faces today because of her morcellation surgery.
Hi there and welcome to another episode of the Drug Watch podcast. I'm your host, Michelle, and today I've got Sarah Salem Robinson with me. She's gonna chat and talk to us about power morcellators and her experience with them. So welcome to the show, Sarah.
Thank you so much. I'm glad to be here.
So let's start at the beginning, you know, tell us about how you were first exposed to power morcellators and also for people that don't know what they are, tell us a little bit about them.
I'm a physician assistant and about 15 years ago I got a position in OB GYN with a fellow doctor. And he would also do a lot of surgeries. And I was also new to surgery and even though I was mostly in the office doing work and working with GYN patients and both OB patients. I did assist occasionally with this doctor. So during one of the surgeries the doctor said, "Look at this, the power morcellator is going to remove this uterus." It was during a hysterectomy surgery. I watched and I had anxiety and I was shocked at first. But I could also feel the elation in the OR at the time, especially from the GYN surgeon that I worked for because he had a new tool on hand. Because what the power morcellator is, is a tool that is used during minimally invasive surgery, which means small incisions, like bikini incisions. The power morcellator has a blender on it and it literally grinds the uterus just as a composter would splinter the wood. And just as that would happen it would splatter all over, bits of the uterus and bits of cells, all over the peritoneal cavity. So it really creates a mess.
Another analogy would be is if you put an apricot into a blender and turn it on, you know, yeah you're gonna have the part on the bottom, which is the apricot but yet it's gonna be splattered all along the glass of the blender.
As you mention that, I can totally see that in my head. The apricot is like the uterus.
Exactly, exactly. And so, you know, yes it does take it out and it does have not only the blender but it has a suction. It removes the grounded uterus but, you know, the suction is not strong enough to avoid that splattering. The risk of morcellation is that if you happen to have something bad in the uterus, whether it be an infection or whether it be cancer, it's going to spread.
So now doctors like it though, right? Because you had mentioned it's minimally invasive, it's easier for them to perform, I imagine, right? The surgery becomes quicker and easier for them. Also, the whole idea of minimally invasive kind of makes the patient go, "Oh, wow!" You know, "This is gonna be simpler, shorter downtime for me."
Yes, exactly. Exactly. You're right about that, Michelle.
So doctors know that the minimally invasive surgery versus doing an open abdominal surgery, like a c-section and removing the uterus intact, will prevent a three to five day stay in the hospital. So that doctor does not need to round on that patient, does not need to follow them for wound problems. So minimally invasive surgery is pedaled to women that you'll be able to wear your bikini and no one will know you've had surgery and, not only that, you'll be able to go home the same day. So if you're a busy woman with kids and a family and such then, you know, you will look at that and say, "Oh, well I'd rather do that then stay in the hospital," and doctors will tell you it takes longer to heal whether or not you do a surgery with small incisions or a large incision, it's still the same surgery so it's going to take the same time to heal. However, the wound, obviously will heal much quicker. That's how the morcellator is sold to women.
So you ended up undergoing surgery with a power morcellator. After that happened tell us, you know, some of the things that you noticed, some of the complications that came out of having that procedure.
I was told that I didn't have to worry and that I don't have cancer, and that the morcellator was the best thing for me to do. I asked for an open procedure and they said, "Oh no, you don't qualify for it because we don't see any risk of cancer." When I had the morcellator I didn't have any complications directly from the morcellator procedure itself. Because there can be complications such as cutting the ureter, which is a tube that goes to the bladder. A woman is catheterized for several weeks and then they go back into surgery and try to connect it and they have a catheter again. It's really a mess if you do have complications from just having the surgery with the morcellator and no other problems. But for me, two weeks later I got a call from the doctor that I had a sarcoma. In other words, a cancer, they had found cancer in the uterus and that scared me because all I could think about was that one surgery I saw and how splattered.
I asked the doctor, I said, "Well you morcellated me, you know, what's going on?" So he said that he would then, you know, send me to an oncologist and we would talk about it later. But in the meantime I researched what I had, which is LMS, Leiomyosarcoma. All that research told me I was in deep trouble, that my mortality risk now would be increased three to four times. I called a good friend, a radiology oncologist and he was devastated for me. He acknowledged that the morcellator was just something that should have never been done and he encouraged me to get second opinions. Because I had told them that my particular doctor at Kaiser was just being really laissez faire about the whole situation. He didn't even want to send me to an oncologist right away. And when I finally did see an oncologist I couldn't get scheduled for a second surgery until nine weeks out. And when I asked for a referral for a sarcoma center, which is something I researched that would be the right way to treat sarcoma because it's so rare. The doctors would not allow it for me.
After you get a cancer diagnosis, as a lot of people that have suffered or survived from cancer know, every single day counts, right? In after you've been diagnosed. So they were sort of giving you the runaround this whole time.
Exactly, and I was working in reconstructive plastic surgery where we would see a lot of cancer and the protocol for, if you saw cancer was to get that patient into surgery within a week.
Oh, and here you are, you know, several weeks out for yours. Yeah.
Yes, several weeks out first before being told I have cancer.
And then being told that now I need to heal before they can do a second surgery, and yet my LMS, which I was told was just a benign fibroid in my uterus, this was near the opening of the uterus, which is called the cervix, and they had left my cervix in. And, in fact, the report reported that my cervix was quite large. So I was thinking, "Oh my God, do I still have cancer in me?" They didn't seem to care. I was told by one oncologist, in fact, "Oh, you're lucky if you live two years."
Oh great. You're like, "Thanks for that."
Right, right, right. He claimed ... And then, you know, I have to tell you he told me, "You know the problem ... " Cause I came in and I said, "Will you give me a referral to a sarcoma center?" He says, "You know, it doesn't really matter if you go to a sarcoma center or not." And then as I left he said, "You know your problem is? Is that you know too much." That really irked me. I mean that was horrible. I was thinking to myself, "What is this? Why don't they care. I am their physician assistant." And when I thought I had a malignancy originally and they would not allow me to have the surgery I should have had in the first place, which was an open surgery that I asked for. You know, they took the risk that I might have a cancer and not tell me about it. Because sarcoma is undiagnosable. When someone tells you ... When a GYN tells you have a fibroid, they don't know it's a fibroid. It could be sarcoma, it could be LMS.
They really don't have good tests for it and so that's another danger of the power morcellator because, like you mentioned, people are sort of just taking a chance. You may have it, you may not. But if there is any chance-
... if someone says cancer to you, I think you would say, "You know what? I don't think I wanna do this."
Let me take a quick and we'll come back and continue talking about the problems with morcellators.
Welcome back to the show.
You have been through a lot, you know, since this happened. Take us through your treatment choices that you made and what you're still sort of going through now.
My radiologist oncologist friend was really worried about me. And he said, "You know, you gotta get to a sarcoma center." And so the first thing I did was I went to Sloan Kettering, which is in New York. Well I live in California. That was a huge trip for me since I'm not used to flying. By getting on a sarcoma online support group, which was at the time, ACOR, one of the biggest branches, has become LMS Direct Research Foundation, which now has a Facebook page. By getting and talking to these people I realized the sarcoma center was what I really needed to do. And so I went there, I got consultation and basically the doctor who I saw, which is basically the queen of uterine LMS, told me ... She was horrified by what happened, first of all, in the way they treated me. And she said, "Why haven't you had a second surgery?" And this was, I saw her four weeks afterwards, was able to get an appointment with her very quickly. Because of such of an aggressive cancer, you know, they wanna get you in as quickly as possible.
So within less than two weeks I was able to book an appointment with her, fly out there and she basically acknowledged that Kaiser did not take care of me the way they should have. So I got a surgery, I went back again to get surgery at Memorial Sloan Kettering because they have a sarcoma group of people. So they have pathologists who see this all the time. Sometimes pathologists at other centers can even miss this diagnosis. So I have to give credit that at least they got the diagnosis correct, but they knew nothing about LMS and they just figured it's an aggressive cancer so why even treat it. So, I mean, and that's the way I was treated, right?
So when I got the surgery they biopsied certain areas that they thought could be LMS and they had a pathologist right there looking at it initially and saying, "No, there's nothing here." But I did have scar tissue, and then later on I got the report, which was the full report where they looked at it even more carefully and they actually did not see any LMS implant, which was great and everybody was saying, "That's great." Okay, but, you know, in my mind I was thinking, "Well why do I have scar tissue on my abdominal cavity? I've never had surgery before." So I thought, you know, great that they didn't find any LMS but was it that my immune system, you know, attacked and killed it and created scar tissue?
By the time I got the surgery, now I'm six weeks out, you know? And so that was always going through my mind. Anyway, the suggested treatment when I saw Dr. Hensley at Memorial Sloan Kettering in New York was, "Well, you know, you were morcellated so you're a very high risk, and perhaps what we should do is begin an aromatase inhibitor. Because the receptors on my LMS tumor were strongly estrogen causes. So I did begin that aromatase inhibitor and I had to get CT scans of my lungs, my abdomen and my pelvis. Now when I got that originally done, everything was negative. But between nine months and a year out, all of a sudden they started to report some small nodules in my lungs. They were really small, not able to be biopsied and I started to think, "Oh my God, you know, is this LMS?" And they said, "Oh well, you know, it could be something, it could be a respiratory problem." And I'm thinking, I haven't had a cold in three years
What you mentioned, the scar tissue, the nodules, I think one of the things that people don't know also is that once you get morcellated, any tissue that gets left in there can grow into nodules, right? And new fibroids.
Yes, so one of the risks of morcellation, even if you don't have cancer, these fibroids can grow very fast. And so splattering just benign fibroid tissue in the abdominal cavity can cause growth, as you mentioned.
And this growth can actually cause obstructions, you know, and cause problems. Pushing organs here and there and so it can cause obstructions in the GI system with the liver. It can cause problems where if you were morcellated, didn't have cancer and everything was fine, it can cause problems where you need an emergency surgery because of obstruction. When you think about it, you know, here they are morcellating you with bikini type incisions and you're thinking, "Oh great, this is gonna be wonderful," but then all of a sudden you go into the emergency room and they cut you wide open from one end to the other because this is an emergency obstruction.
So that can be the risk of just someone who doesn't even have cancer.
Yeah, and just the near journey alone here you've already been through so much just because of the morcellation and you are not done yet, right?
Yeah, I need another surgery to remove the cervix and the ovaries now because I was highly estrogen positive. I needed to have CT scans every three months of the three levels: lungs, abdomen and pelvis. Within nine months, you know, to one year they saw these nodules in my lungs so LMS spreads not through the lymphatic system but through the blood. And if you think about the lining of the abdominal cavity, that's just like the lining of your mouth, which has all these blood vessels right there. So they like absorb things right away. And one of the things that LMS goes to the most is the lungs. So I just thought, you know, okay these nodules, they might be something here. I mean, actually they weren't growing that much.
And then in two years time, almost two years time, I also had this nodule in one of my vertebrae. "Oh boy, now it's in my bones." It was something that was like the size of a dime. So it's very thin as well and a biopsy could easily miss it, so why even bother if you really don't feel 100% that a biopsy would get it to test to see if it is LMS. So I had that and then I found out, this year I had surgery because a metastasis in my pelvis. There was a two centimeter nodule in my pelvis on the lining of the peritoneal. It was like holding on to the mucus membrane and growing. And that is an indication that morcellation actually had caused because had it been taken out intact, it would not have caused any cells to cling onto the peritoneal cavity.
So my feeling is that my immune system was able to take care of it. However, I was also given a, what's called an aromatase inhibitor, which is a very strong antiestrogen medication from the very beginning from Dr. Hensley at Sloan Kettering.
And I believe that that's what has kept my LMS at bay. So literally, you know, having the morcellation changes a cancer diagnosis, which they told me I was stage one. They told me it was within my uterus and no where else because my CT scans were all negative and it changes this from a stage one to a stage four.
So LMS has about a 60-80% survival at stage one for five years survival.
But a 10% at stage four so-
Yeah, so that changes. That definitely changes a lot.
Yeah, so, you know, in my mind I was thinking to myself, "I may not live." And I watched many women who had been morcellated who didn't even make that one year mark. And of course there's a famous woman doctor, Dr. Amy Reed and her husband Dr. Noorchashm and she just passed away from the morcellation and she fought so much the peritoneal, which is inside the abdominal cavity, tumors that kept growing. I think I may have been lucky cause I had a seasoned doctor who did the morcellation. So I believe that he knew to, after a morcellation procedure, to wash me down with lots of saline to try to get every little speck out, which is the way you're supposed to do morcellation.
And so I believe that there was probably less splatter left in my, but with Amy Reed I think that her doctor was fairly new to morcellation. Sure she had done a lot but I bet she failed to wash down a lot of it. And so poor Amy found that she had chunks of tissue and so she fought really, really hard. And my heart breaks for her, for her loss, for her family, for her six children. She got this diagnosis when her child was just about a year old, her sixth child. Her children were from the ages of less than two to, I believe, twelve at the time.
Yeah, so they had to watch her, you know, go through that whole time, you know, fighting. And she, like you said, she beat the odds actually.
She, I believe, was just short of four years out. She was diagnosed one year after me. It kills me because as soon as I was diagnosed, I wanted to get the word out there and I went to my local paper and I had them write about it. I tried to warn women as much as possible. I tried to go to the other papers. As you know I've been reaching out and I've been an advocate. I started a morcellation Facebook page, Campaign Against Morcellation - Help us Save Women's Lives. And then working on that for over three years now, trying to reach out to women but women are still being morcellated.
Let me take a quick break and we'll come back and continue talking about the problems with morcellators.
Welcome back to the show. We were discussing about Leiomyosarcoma and because of, you know, people like you and Amy Reed and a lot of all the other women that have been talking about it, the use of power morcellators has gone way done. You know, and we can definitely say that with the education that that's helped. Even though it hasn't been banned, people know so much about. I think some hospitals won't touch morcellators anymore, you know, and some health insurance companies won't cover them. So that kind of helps.
Yeah, it helps but the problem is, is that's east, you know, a lot of people know about it. You talk to people here in the west, they have no idea what a morcellator is. In fact, there was a woman who was morcellated at the same center where I worked just less than a year ago, and she has LMS. So that center basically, I found out, right after I was diagnosed continued to buy morcellators. They bought two more morcellators within six months knowing that here I was, I brought it up to their attention. I talked to the chief of staff and said, "Look, you have to change what you're doing." I wrote to the CEO and said the same thing. And I was just ignored and they're buying two more morcellators.
I mean, and here's the crazy thing, you are someone that's educated about this. You're not the average patient so a lot of the women that come in there have less of an idea about this. So they're not even coming in there with the right question. This happened to you like someone that knows about it. So I think the important thing is that, you know, according to the FDA and everything, they're supposed to be educating women about it before they do it. But of course the FDA isn't mandating this really. You know, it's up to the doctors and up to everybody still about it, and of course the manufacturers are still happy to sell these things.
Right, right. It's shocking, it's shocking.
It is shocking.
That doctors are not doing what's best for the patient. Here you have most of these women with LMS are very healthy women. They're women between, usually between the ages of 40 to 55 when they're diagnosed. So with a lot of women having families later in life, many of them have children still at home and it's awful to see that this is happening because this is an elective surgery and yet even though the FDA said, "This is not for most women. Do not do it in the perimenopausal or menopausal years." FDA indicated, but we're leaving it up to the GYN to make that decision. There are still minimally invasive centers out there that this is their bread and butter.
Now granted, they have other surgeries they can do like endometriosis that I thoroughly agree should be done. But there are a lot of women having hysterectomies, in fact there are 600,000 in the US and the risk of women going in for fibroids who are symptomatic, have bleeding, have pain, and so they're going to have a hysterectomy. The risk of those women going in to have minimally invasive morcellation procedures is 1 in 350 that they have an aggressive sarcoma.
In 2013, Kaiser came out with a study that basically said, and this is Kaiser Center in California where they did this study, in the west coast. One in 67 woman who have morcellation for fibroids will have ... Or any kind of morcellation, not even with fibroid, will have cancer of some sort.
One in 67, that's astounding odds. You know, if someone told me one in 67 chance I could win the lottery, I would play all the time. I mean that's incredible.
... one in 350. Okay, yeah, you know.
Yeah, that was already bad.
But if they told you one in 350 women would be shot dead, you know, all of a sudden you would say, "What? For an elective surgery? For something that can be taken out intact with clear margins," and I believe that those, the stage one, which most women are at when they have these surgeries, if they have surgery it's probably greater than 60-80% because I think that the numbers of women who are morcellated, the increase risk of stage one morcellated patients have been put into that study. I think it's a lot higher, I think it's probably 90%.
Right, and they even admitted they don't know for sure, you know, that it could actually be higher.
They don't know because they say it's rare and in the text books when GYN's learn about it. In the whole population of women they say they're about 5-7 in one million women who have this. You know, and the number one to 350, you know, I mean are willing to take that risk. And yet your GYN, what they basically have done is put in an informed consent, they don't even to have to mention the morcellator. They could say, "This minimally invasive surgery may spread cancer. We wanna let you know that, but it's so rare that it's not gonna happen to you."
Yeah, they really downplay the risks.
They're not being straightforward and medical institutions are, I think, pushing the GYN's to this because the efficiency, the cost effectiveness of morcellation is so great that women who have LMS become collateral damage.
Yeah, and they're willing to take that risk because they make so much money out of it.
But is it ethical?
Now we mentioned all this stuff here and you talked about taking the uterus out whole, for instance. If women are considering fibroid removal or hysterectomy what kind of advice would you give them to sort of keep themself safe?
Okay, the advice is that even if you have some cancer biopsies to rule out cancer, such as endometrial cancer, it's not 100% sensitive. It also depends on the practitioner and how good they can actually do the biopsy because what they are doing is they are swirling it around and are they getting the whole periphery and obviously they're only getting a very small sample. So even with endometrial biopsies being negative, there could still be a cancer lurking, but if you have a fibroid, one in 350 women who are gonna need a hysterectomy are at risk for LMS, I would say definitely do not let them take it out with morcellation. If they tell you minimally invasive surgery, that means unless it's taken out through the vaginal canal, unless they're telling you they're gonna take it out whole through the vaginal canal, that they're not gonna use a scalpel in case it's too big to come out. Because a scalpel type of morcellation is also very risky. So make sure that uterus is going to be taken out intact and very carefully taken out. So the only way to do that is to have an open procedure.
They don't necessarily have to make a c-section as long as a c-section incision. It all depends how big the uterus is and how to remove it. It needs to be removed carefully. Do not go with minimally invasive morcellation procedure. Ask a lot of questions, keep asking. Know exactly what kind of surgery you're having. If your doctor is not answering your questions, or if your doctor is telling you, "Don't worry, I've never had anybody that's ever had this, you're not gonna have this." Go get a second opinion. If you need to, go get a third opinion. There have been people with LMS that have gotten second and third opinions and have been told, "You'll be fine. We're gonna take good care of you," even by some of the best doctors and still had minimally invasive morcellation, ended up having LMS.
I'm thinking of one woman who passed away and left a seven-year-old child recently.
Yeah, and that happened to her. Even when she was trying to look around and people were assuring her, "Hey, morcellation will be okay for you."
You mentioned this here. You've known a lot of women that have had LMS and other cancers after these procedures. Say, you know, someone that is newly diagnosed or that is just starting to go through this journey, what can you tell these women?
Very good. And, you know what? I would, before I answer this question I would add to the last question, you should always bring an advocate for yourself. So you need to bring a friend as a witness when going to consent for any kind of procedure. Read that consent word for word, ask a lot of questions to clarify that you know exactly what's going on. Ask the question, "Will a morcellator be used?" And if you hear that, run.
Now if you are diagnosed with LMS it's a very difficult diagnosis, even without morcellation. But you need to find a sarcoma center. A sarcoma center is a place that sees your kind of sarcoma regularly, I would say at least 100 patients a year with your sarcoma diagnosis. Listen to what they have to say. If you have questions or you don't know, it's fine to get second or third opinions but if you have been morcellated, you need to get to a surgical center that treats sarcoma patients immediately. The longer you wait with this kind of cancer within your body, the more risk you have. Get a lot of support, get on the Facebook page - LMS Direct Research. They have a Facebook page for LMS. You can contact me through the campaign page that I mentioned before, Campaign Against Morcellation - Help us Save Women's Lives.
So contact me, I will help you every which way. You need to get a lawyer involved. You're gonna need a lot of money to help you with treatments. You're gonna need money for your family. You don't know what the future holds. You need to get a lawyer that you trust. Let me tell you, there are a lot of lawyers out there that are difficult and may not want to look into things with you. So you wanna find someone that's going to help you through this process.
Thanks so much for joining us on this show, Sarah, and thank you so much for all the help that you've been giving women over the last couple of years here. And, again, we're so grateful that you're here to share all your knowledge with us and with everybody listening. So thank you so much for being on the show.
Oh, my pleasure, my pleasure. Thank you, Michelle.
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