Endometriosis and the Relationship to Ovarian Cancer

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Roberta Speyer: “This is Roberta Speyer reporting from the AAGL conference in Atlanta. I’m talking to Mary Lou Ballweg, President of the Endometriosis Association and Dr. Farr Nezhat, Professor at Stanford University. Farr, you’ve taken on a new title, would you tell us about that?”

Dr. Farr Nezhat: “Yes, thank you very much, Roberta. Since last July, I have taken three years of fellowship in gynecology and oncology at the Department of the Obstetrics and Gynecology at Mount Sinai Hospital in New York.”

Roberta Speyer: “I know you’ve been taking some ribbing about that here at the conference, Farr, that you’ve gone back to become a fellow member. Would you tell us a little bit about why you did that?”

Dr. Farr Nezhat: “I am very excited about this fellowship. For some time it’s been in my mind that I wanted to do this fellowship, and there were several reasons to do that. First of all, I wanted to expand my knowledge in gynecologic-oncology and have a better understanding about the disease and the application of laparoscopy in gynecologic malignancy. So I thought if I have a basic and deeper knowledge about this disease, I will have a better way to use laparoscopy in this regard. The other reason that I wanted to do this fellowship was that I see a lot of similarity between endometriosis and ovarian cancer.”

Roberta Speyer: “Do you see that too, Mary Lou?”

Mary Lou Ballweg: “What we’re seeing is that women with endometriosis actually develop ovarian cancer. We now have new data, which shows that in the families of women with endometriosis there is an 8% incidence of ovarian cancer. I hadn’t even had a chance to tell you that yet. I’m also looking at the data on the women themselves. Although the average age of onset is a little bit later so that we’re not maybe seeing it so much in our younger women with endometriosis yet but I completely agree with Dr. Nezhat that there’s a lot of similarities.”

Roberta Speyer: “So you feel that this is also going to help you tie back into your practice with the treatment of endometriosis?”

Dr. Farr Nezhat: “That’s right, considering working with women with endometriosis has been our primary goals and practice. So I think that doing this oncology fellowship will give me a better understanding and also be able to, hopefully, do some more research in both ovarian cancer - which is unfortunately a deadly disease and pelvic endometriosis - which is a very devastating chronic pain condition.”

Roberta Speyer: “We’re certainly looking forward to being able to interview you in more depth about that as you progress further into your fellowship. Tell me what you both think about the discussions and presentations you’ve seen here at this Congress in regards to endometriosis. Mary Lou, would you like to give us a little bit of your opinion and maybe the two of you could discuss it, and I’ll just sit back?”

Mary Lou Ballweg: “Yes, someone just said to me at the booth that this group - the AAGL - seems to have flattened out, and I said - no, I don’t think so. I think what’s happened, and I don’t know if you agree or not, is that in North America the revolution in operative laparoscopy has occurred for the most part. The Nezhats were leaders in that, of course, and now it’s being taught worldwide, and there’s still lots of people who need to refine their skills but it’s not quite the revolution that it was ten years ago. Now, everybody agrees that this is the best way to do surgery. It’s not the big argument it was ten years ago that we should still be doing laparotomies.”

Roberta Speyer: “People like things when they’re controversial and at the cutting edge. Now that we’re agreed it’s the gold standard, where do you think we’re going to take it from here, Dr. Nezhat?”

Dr. Farr Nezhat: “Several years ago, I remember I came to this society and we were practically the first people which presented data regarding the treatment of severe pelvic endometriosis laparoscopically. Now you can see from different groups - not only in this country where most of the laparoscopic treatment of endometriosis is done but from the other countries - that they have used laparoscopy for severe endometriosis, and they presented their data. As Mary Lou was saying, we see other eastern European countries, the far east countries, and some middle eastern countries using laparoscopy not only for diagnosis, which now nobody has any question that it should be a standard tool for diagnosis of this condition but they’re using it more and more, not only for treatment of the mild endometriosis but for severe and complicated endometriosis.”

Roberta Speyer: “Do you see new technologies emerging at all, perhaps, like the transvaginal hydrolaparoscopy or other ways for diagnosis or do you think it’s just going to stick with the laparoscopic diagnosis in the future?”

Dr. Farr Nezhat: “Hydrolaparoscopy is some sort of laparoscopy, coloscopy is too, it’s not new and it was used for many years in the past but coloscopy had some limitations and also some complications so it did not become popular. Now using the hydrolaparoscopy, it is a new devise that they’re using the telescope from the posterior cul-de-sac and using fluid for distilled media and also using a video laparoscope for magnification. So these two combinations and having better light sources might give us a better tool for being less invasive for diagnosis of the endometriosis.”

Roberta Speyer: “Would say that would be more applicable to early stages when you might not be going to do excision?”

Dr. Farr Nezhat: “First of all, right now it is only for diagnosis and of course if the patient has severe endometriosis with involvement of the posterior cul-de-sac and posterior cul-de-sac obliteration, it is contraindicated because you’ll have bowel perforations. So it is definitely applicable for diagnosis of the early cases. However, we are still in the primary stages, and we have to wait until more people do it and we find out what the results are.”

Roberta Speyer: “It bears watching. What do you think is going on here at the conference that you’ve found particularly interesting, Mary Lou?”

Mary Lou Ballweg: “What I find interesting is that these techniques that were pioneered here in North America by Doctors Nezhat, Redwine, and Harry Rich, and some of these other people are now being enthusiastically embraced in many countries all over the world. That’s been happening for some years but just as I was talking this morning to a physician who does these procedures in Egypt, suddenly it changes their perspective of endometriosis because they’re seeing it over and over and over again. If they’re doing laparoscopy, which they weren’t doing much of before, suddenly it seems to them that endometriosis is everywhere, where actually it was probably there all along. So what it does for us is it changes the awareness of the disease worldwide, and people are coming to us and saying, “You were right, you were saying endometriosis is in all these countries and now we’re seeing it.”

Roberta Speyer: “What about the factor that it’s still that deep incision that has to be done with severe endometriosis, there’s still so many women that are writing to OBGYN.net, and I know that they’re constantly barraging the Endometriosis Association, and they’re contacting your office because it’s difficult for them to find a skilled enough surgeon. How is that going to be addressed and changed? Do you see a change in that, Dr. Nezhat?”

Dr. Farr Nezhat: “Yes, we see it. First of all - you have to have knowledge of the disease, and second of all - you have to have the skill to be able to treat this disease adequately. For many years we had the tool of coagulation by laparoscopy, and we know that the coagulation for maybe very superficial lesions are adequate but for deep infiltrating lesions you have to eradicate the disease. As I said, you have to have knowledge of the disease and also the skill and you have to see it, and this can only be acquired by the people that are seeing too many of these cases. An average gynecologist and obstetrician that does obstetrics and has an office practice may not see that many cases. If they do not see it, they will not be able to treat it, and that’s very important. We should not expect too many general obstetricians or gynecologists to do that for them. Unfortunately you have seen here the treatment of this disease is complications, the same way that if you do not treat the disease, the patient may have complications from the under-treatment, and the patient will have pain and continue to have the problem. If someone doesn’t know how to do it, you could have bad complications, and I know of several deaths that have happened. So our role as pioneers of this technique is to teach the people not only to recognize the disease but also to teach them that with this disease, if you want to treat them, you have to be prepared for the bowel injuries, bladder injuries, ureter injuries, and they have to have a backup of the other disciplines.”

Roberta Speyer: “Mary Lou, maybe you’d like to comment on this. It sounds that what I’m hearing you say is that there is still a limited amount of physicians, let’s discuss North America and assume that that spreads out further since this is an axis of this technology. It is still difficult to find a treatment center that is going to have physicians skilled enough to deal with this. It is getting better - is that what I’m hearing, it’s getting better but it’s still difficult? What then, Mary Lou, is the responsibility of the individual because everyone says - I want to go to somebody in my HMO. People have financial considerations, maybe you’d like to address that.”

Mary Lou Ballweg: “I would like to address that because managed care, unfortunately, has made it a lot harder. It’s very shortsighted on the part of managed care, if you’re going to send that patient for surgery to someone who doesn’t know what they’re doing, you’re just going to have them back in another surgery and another. I was talking to some women recently who had twenty, thirteen, and eight surgeries. That HMO did not come out ahead by sending them to people who don’t know what they’re doing. They would have been much better off letting them be referred out to somebody who really is skilled and on top of it. These women are now full of adhesions and complications as Dr. Nezhat was saying.”

Roberta Speyer: “So then it becomes also part of the managed care medical system in our country that is making it a little more difficult for people to get to the physicians they need to get to. What is the Association and what are you, the physician’s of AAGL and the pioneers in this technology, what are you seeing as your responsibility to help change that system? If I’m just a woman suffering from endometriosis out in Podunk, there’s not much I can do to change the system. I’m probably lucky if I can get out of bed some mornings so how do all of us - OBGYN.net, the Association, and the professional association of physician pioneers, what can we do? Is there anything that can be done, and is there anything that is being done?”

Mary Lou Ballweg: “What the Association is doing is trying to educate people about the fact that you can’t just go to your average obstetrician or gynecologist – just because he delivered your baby does not mean he can do this type of surgery. That’s a very hard message for a lot of patients because they have a comfort level with a particular physician. Unfortunately because of managed care and having to make a living and all, it’s also a hard message for a lot of the average, not super-specialized gynecologists. They’re not doing a service for the patient if they don’t say, “This is beyond the scope of what I can do, and you really need to see somebody who’s seeing hundreds of cases.”

Roberta Speyer: “Is it a good idea for a woman to consider even if she has to go outside her medical coverage?”

Mary Lou Ballweg: “Absolutely, if she can swing it in some way and usually some of the best surgeons will help find a way, the Association will help them find a way. The other key thing they have to do is they have to talk to other women with endometriosis. In any community in North America other members of the Association will know who is good, who to go to, and who to stay away from.”

Roberta Speyer: “So it’s networking here, very good.”

Mary Lou Ballweg: “Yes, it’s networking, but networking with informed consumers. There is always people out there who have a little bit of knowledge, and we all know a little bit of knowledge is a dangerous thing.”

Roberta Speyer: “So you want to avoid friends, you want to go with something that is established, and you want to talk to other people that have been through this and had good outcomes and bad outcomes.”

Mary Lou Ballweg: “Right.”

Roberta Speyer: “Dr. Nezhat, what do you think is the responsibility of the physician community to help change this managed care issue?”

Dr. Farr Nezhat: “I totally agree with what Mary Lou said. I think all of us - the government, society, the physician, and the patient all have to work together to make this procedure work. As a physician, we have to educate our colleagues and teach them about this disease and about the proper treatment. Then they have to realize which one’s they can do and which ones they cannot do, and if those physicians are part of the HMO’s then they could refer the patient to the proper…”

Roberta Speyer: “So that’s the key, if the referral comes from the physician, it can be done. So are we seeing a problem with those physicians wanting to let go of the patient and knowing when to refer?”

Dr. Farr Nezhat: “That’s right.”

Roberta Speyer: “This is some of the things that were discussed at the World Endometriosis Congress about the creation of the WES - the World Endometriosis Society was to be able to have some ways to credential, was it not, so a physician would know that they could refer out and there was another level?”

Dr. Farr Nezhat: “That’s right, we frequently get patients referred from the HMO physicians that know themselves, they trust us, they know we will take care of their patients, and the patients that come to us are properly treated. Unfortunately, endometriosis is a chronic and recurrent disease, if the pain comes back; they know how to go back. If they need a consultation, they pick up the phone and call them and say – I now have Mrs. Smith in my office after two years and she wants to get pregnant, what do I have to do? So as long as the referring physicians are educated and they know these people are available, they will feel more comfortable to refer their patients. The other thing is about the patients themselves, I think the patients should accept some responsibility for their body. Women will go on a trip for $5,000 or $3,000 and they will buy a new car but they have to accept the responsibilities. This is their body and they should not rely only on the physicians. I’ve had a lot of patients, and Mary Lou knows, that have done research, campaigned, and talked to other people, and even some of them have taken lawyers and have fought against their insurance companies and they have won.”

Roberta Speyer: “We happen to know one of the ladies that wrote into OBGYN.net about how she came to you and your brothers for surgery and that you worked with her over an extended period of time to pay for that surgery. I think she’s still working on it but she felt very good about that because she knew that she couldn’t afford to do that, she didn’t have the insurance coverage part. So if the physician specializes in this, do you see that they try to work with the patients?”

Dr. Farr Nezhat: “Sure, we have done it for the past ten or fifteen years that they have been doing these procedures. In any aspect, I don’t want to talk about ourselves but Mary Lou knows that a lot of patients don’t have any money, and we have done the surgeries for free. Some of them have been able to pay a small payment, and we have worked with them. So I think the patient has to get some responsibility.” 

Roberta Speyer: “Do you agree with that, Mary Lou?”

Mary Lou Ballweg: “Absolutely. I was talking at our Atlanta chapter on Wednesday night, and I was making the analogy that a lot of us will do a lot of research in choosing a car or an auto-mechanic but I’m appalled at how many, and it’s not just women but I see men doing this too, will go to the yellow pages to find a doctor or a dentist. Yet, I think our bodies and our lives are more important than our car or our house, and a part of it is that people are often afraid to take the responsibility. If I put all my faith and trust in Dr. Nezhat, then I don’t have to think about this. I don’t have to realize how complicated it is, and I don’t have to read all this. Some of it’s just fear and some of it is ignorance about our body.”

Roberta Speyer: “Of course, if you did that with Dr. Nezhat, it would be okay but with some people perhaps it would be a big mistake.”

Mary Lou Ballweg: “I think part of the problem that we face is trying to get across this concept that this is a disease that needs a specialist. We need the concept of an endometriosis specialist out there, and in our current managed care environment that would help but we’re not getting real far with it. But there are people who really have a handle on endometriosis, there are not enough of them, but we need to create that specialty. Over the long run, there may even be a specialty that’s recognized and called that.”

Roberta Speyer: “But what I’m hearing both of you saying is that as the situation stands now, the most important thing that a woman can do is find a physician that is skilled, and if she wants her medical coverage to follow her, get a physician that will refer her to a specialist.”

Mary Lou Ballweg: “I think the most important thing to do first is for her to do her homework. You can talk to a lot of physicians, I was talking to one yesterday who was so convincing talking about a cure rate – sorry, but we see those people after the surgeries and they’re still not cured. Maybe they’re afraid to go back and tell the surgeon about this. You really need to first do your homework, get in touch with the Association, get in touch with other women, and really take on board that this is more complicated then any of us want it to be. Then decide on a physician because even in the range of specialists you may have a special problem that you need to be aware of that somebody may be able to better address than someone else or maybe it’s not a surgical approach that will work best for you or just a lot of different issues. So you need to have that all in line before you even choose that specialist.”

Roberta Speyer: “Do you agree, Dr. Nezhat?”

Dr. Farr Nezhat: “Definitely.”

Roberta Speyer: “So once you’ve done that, once you’ve got it in your mind who you want to go to, you have to go through your gate keeper. Do you bring that information with you?”

Mary Lou Ballweg: “Some women do but it’s not always well received, sometimes it is.”

Roberta Speyer: “Is there a method you’ve found that would make it better received? Just some tips for the listeners.”

Mary Lou Ballweg: “Again, I found that our local groups - and we have chat rooms, etc. - they will know locally how best to deal with specific physicians.”

Roberta Speyer: “That’s true, so back to the networking.”

Mary Lou Ballweg: “And they’ll know - so you know what worked for me when I had that doctor and that health care situation, this is what I did. It will be different often in different health plans, different physicians, and different groups but locally the women who’ve been through it for years will know.”

Roberta Speyer: “Dr. Nezhat, does it work the other way? If I were to call you and say - I know I really want to end up with you but I am here - can you then say and have a network back that says - I would think that you should go in this area and see this person? Does that ever happen?”

Dr. Farr Nezhat: “Sure, I see a lot of similarity, again, I hate to compare endometriosis with cancer but both of them need a specialist and both of them are a complex-type of disease. Not every gynecologist or even his or her family physician will know about it. So the same way we have a society of the gynecologists-oncologists, we also have non-official endometriosis experts across the country. I have frequently had people from the West Coast or other coast call us and we have given them Dr. Redwine’s name or in the Midwest - Dr. Bob Franklin or Dr. Dan Martin. These are the people that you know, you know their work, and you trust them. So if they call us, you don’t expect everybody to come to you because the country is big and there are all kinds of limitations that people have. We even get telephone calls from abroad from Europe that want to come in because they look at the Internet, they see that they have publications about endometriosis and severe endometriosis, etc. and they have these problems and they ask us.”

Roberta Speyer: “So there’s a network within the Association, and now there’s a network also of the physicians. So things are getting better.” 

Mary Lou Ballweg: “Yes, they’re getting better, and I said that at my speech the other night too. When you’re struggling with pain it’s hard to remember that it’s actually better, there are more treatment options, there’s all these new surgical approaches. That’s a lot better than it was fifteen years ago, but we still have a long way to go, and we’re not going to stop until we have a cure.”

Roberta Speyer: “One quick question.”

Mary Lou Ballweg: “I want to say something about the cancer. I was so thrilled when Farr told me he was going to do this oncology fellowship because we’ve talked about this many times. We share this belief that endometriosis acts like a cancer, beyond that I’m finding that lots of people are unaware that there is some very good work showing that women with endometriosis have a higher risk of cancer, particularly ovarian cancer, breast cancer, non-Hodgkin’s lymphoma, and maybe melanoma. I know when women first hear this they’re very afraid but you can only protect yourself if you know. For ovarian cancer, we have lost members, I mean people have died because they thought it’s just another cyst or it’s just my endometriosis. Not everything happening in the abdomen is endometriosis, you can protect yourself by knowing this.”

Roberta Speyer: “Yes, this cancer is treatable caught early on?”

Dr. Farr Nezhat: “Yes, ovarian cancer when it is detected early, the survival rate is 85%-90%. Unfortunately, many of these are detected late but two-thirds of them are detected late so the survival rate is only 25%.”

Roberta Speyer: “So the endometriosis could mask the symptoms and women have to be aware of that besides perhaps the other links. One quick take away message from this conference - what do you see going on here that’s new, exciting, and hot for endometriosis in the next millenium – Mary Lou?”

Mary Lou Ballweg: “I think what I see is a continuation of what’s been happening that this wave of awareness about endometriosis is washing around the world. In countries that we never heard from before, they are now seeing endometriosis, diagnosing it, attempting the more complicated techniques, and I’m excited about that because you can’t address a problem until you see the full scope of it. So worldwide, I hope that we’ll continue to build this network of women, and I don’t know if it’s appropriate to tell people that they can check out our website if they want to at www.endometriosisassn.org.” 

Roberta Speyer: “Absolutely, it’s a wonderful website. You can always find it on OBGYN.net; we have a direct link to it on our button bar. Dr. Nezhat, what do you see coming on the new millenium for endometriosis from a physician’s perspective?”

Dr. Farr Nezhat: “We have to work in three areas, we have to work on prevention, treatment, and research the etiology of this condition. I think, at least I’m hopeful to do some genetic work to find out the basics of this condition and then try to prevent it in our young women before they have this problem, and then the next...”

Roberta Speyer: “So genetics will be key you think?”

Dr. Farr Nezhat: “That’s right, that is one of the areas I’m going to work on. The other thing is about early treatment - before the treatment you have to find the best way of diagnosing early with less invasive procedures. Right now laparoscopy is the most accurate method but of course it is invasive, a patient requires at least mini laparoscopy, and then of course the treatment but again, if you could find medication that you don’t have to do surgery, it’s preferable. If you have to do surgery, you have to give enough techniques that, again, are less invasive.”

Roberta Speyer: “So I’m lucky to be sitting here with two of the pioneers of bringing awareness of endometriosis, Mary Lou Ballweg and Dr. Farr Nezhat. I think what I’m hearing is that endometriosis is finally going to come into its own in the new millennium. People are waking up and smelling the coffee. We’re part of the press agency here, and the message is - get the message out there. Get the message out there.”

Mary Lou Ballweg: “Yes, thank you.”

Roberta Speyer: “We’ll all continue to do that. I also want to mention that the Nezhats have a fabulous website that’s also linked from this interview, as will be the Endometriosis Association. It’s available on OBGYN.net and you can read all the abstracts of all the fabulous publications the Nezhat brothers have done on work with endometriosis. I’m looking forward to the World Endo Congress in London in 2000. I think we’re going to see some exciting stuff there. What do you think?”

Mary Lou Ballweg: “I think so.”

Dr. Farr Nezhat: “Yes.”

Roberta Speyer: “Thank you.”

Mary Lou Ballweg: “Thank you, Roberta.”

Dr. Farr Nezhat: “Thank you very much.”