Prophylactic Surgery for Women at High Risk: Part 1

Jamie DePolo: Hello, everyone. Welcome to this edition of the Breastcancer.org podcast. I'm Jamie DePolo, the senior editor here at Breastcancer.org, and I'm very excited to talk to our guest today, who is Dr. Alan Stolier, who is a surgeon at the Center for Restorative Breast Surgery in New Orleans. He has more than 35 years of experience in surgical oncology. Dr. Stolier specializes in the surgical treatment of breast cancer and is a pioneer in the development of nipple-sparing mastectomy. Dr. Stolier also focuses on breast cancer genetics and the associated care of women who have an abnormal BRCA gene. He is a fellow of the American College of Surgeons and is a member of numerous professional societies including the American Society of Breast Surgeons. Dr. Stolier, welcome to our podcast.

Dr. Alan Stolier: Thanks for having me, Jamie.

Jamie DePolo: We are very excited. We're focusing on genetics in this month, and many of our visitors always have a lot of questions about genetics. So to start with, if a woman knows she's at high risk for breast cancer, whether she has a family history of the disease or if she has a genetic mutation, there are many options she has. She can have prophylactic, or as we also call it preventive, mastectomy and oophorectomy, which is the removal of the ovaries. Can you help us understand what's involved with each of those surgeries and how much each one can reduce risk, potentially?

Dr. Alan Stolier: So let me start off in the area that I know the least about, but I'd feel relatively comfortable talking about, which is removal of the ovaries and tubes to reduce the risk of ovarian cancer. The removal of the ovaries and tubes is actually a rather generally easier operation than it was several decades ago.

Jamie DePolo: And why is that?

Dr. Alan Stolier: Now it can be done, many times, using laparoscopic techniques with or without robotics. But there's a very important part here, and the important part is that removal of the ovaries alone is probably not sufficient to reduce risk. In the last decade or so, we've begun to realize that many of the cancers that we called ovarian cancer were, in fact, cancers that arose in the fallopian tubes or the tube that goes from the ovaries to the uterus. So therefore, it's really critically important that when someone is having preventive surgery, or risk reduction surgery, as it's many times called, that both the tubes and the ovaries be removed on each side. So the risk reduction when one does these procedures is said to be somewhere between 80 and 90%. So it doesn't totally eliminate the risk of ovarian or tubal cancers, but clearly reduces risk rather substantially and probably is the most effective way to reduce risk for ovarian cancer.

Jamie DePolo: Does removing the tubes and the ovaries reduce breast cancer risk at all?

Dr. Alan Stolier: It does, indeed, which is the interesting part. Removal of the tubes and the ovaries obviously cuts down on estrogen levels. It doesn't completely eliminate them, but it does cut them back substantially, and there is said to be about a 50% reduction in breast cancer risk just from removing the tubes and the ovaries. The information we don't have, however, is what happens when, if we remove the tubes and the ovaries and we then replace hormones that we've just taken away. I would suspect that it's still a considerable reduction in risk because we don't have to replace... It depends on which hormones we're replacing. But we're replacing exactly the same hormones that we took away then we may not be reducing risk. So it just depends on what's done and whether or not the hormones that we replace are exactly the ones that we took away with the tubes and the ovaries being removed.

Jamie DePolo: And when you say replace the hormones, I assume you're talking about a woman who would take hormone replacement therapy or something?

Dr. Alan Stolier: It is, and there's a big difference, however, because if a woman has her tubes and her ovaries removed, she still in many instances has her uterus, and it's still intact. And if we just replace estrogen, one of the two major female hormones -- the two being estrogen and progesterone -- if we just replace estrogen, we know now from decades of work and studies that this will increase her risk of uterine cancer. And so in order to bypass that risk, to eliminate that risk, we generally would give her estrogen and progesterone. And it's the estrogen and progesterone in the Women's Health Initiative studies, the Women's Health Organization studies, that have shown an increased risk of breast cancer.

So I think right now it really depends on whether women have their uterus removed at the same time they have their tubes and ovaries removed. And I don't think that there's an absolute recommendation for this to be done, but the way that I think about it is, is it may be highly beneficial to have the uterus removed. Not because it reduces the risk of cancer, but it allows you take estrogen alone and not estrogen and progesterone, which may -- which MAY -- be a safer alternative, if that makes any sense.

Jamie DePolo: No, no. That does. It does make sense.

Dr. Alan Stolier: So the procedures themselves are much, much easier on a woman than they were many, many years ago when we had big cuts made and recoveries took a good, long time.

Jamie DePolo: What's the average recovery now? I know we'll get into a little more details later as we talk, but since you brought it up, what's an average recovery time now if someone were to have, say, tubes and ovaries removed and then tubes, ovaries, and uterus removed? Is there a difference or is it pretty much all the same?

Dr. Alan Stolier: I can't speak with any great authority since it's a not a procedure that I do. But I would think that if it's done laparoscopically or using robotics with laparoscopic approach through small openings made in the abdomen, that it probably takes a bit longer when you have the uterus removed than when you just have the tubes and the ovaries removed. But I would imagine that that difference is becoming more narrow each day as the techniques get better and better. So I think recovery is clearly much, much quicker than it was a few decades ago with open procedures.

Jamie DePolo: Okay. All right. And then what about preventive mastectomy, or risk-reducing mastectomy?

Dr. Alan Stolier: That's a different situation. So, if we first look at risk reduction, the first thing we talked about was when we remove the ovaries, we reduce the risk of breast cancer. So if we want to look at the risk reduction from doing risk-reduction mastectomies, or preventive mastectomies, then risk reduction's probably in the 90-95% range. The women who are getting these problems, and these surgeries, and developing breast cancer, many times are women in their 30s and 40s. And because they're in their 30s and 40s, the number of years left in their life is quite substantial. It might be 40 years. And we have no 40-year data to know what the actual reduction in risk is. Our estimate right now is 90-95% risk reduction, 95% being more for women that have had their ovaries removed, and 90% or so being for women that still have their ovaries and tubes. And it's very hard to say, but if you just look at some very simple numbers -- so when we tell a woman that her risk has been reduced by 95%, it's hard for people to understand exactly what we're talking about. So if you're talking to me, say, “Well, what does that mean? What does a 95% reduction mean?” And if you do it in a very over simplified form, and you look at 100 women who have a BRCA gene mutation, right -- because we know we all have the gene, it's the mutation in the gene that is the issue, and we all have some form of deleterious mutation in genes -- then we know that at least 80 out of 100 women will probably, in their lifetime, develop -- and I'm trying to round off to make it easy -- will develop breast cancer. And if we reduce their risk by 90%, that means that 72 will not get the disease, okay, times 9, 72 will not get the disease. So that means that eight will. So eight out of 100 is lower than the probable 12 out of 100 or so that is the risk that is said to exist for women who are otherwise normal.

Jamie DePolo: The average risk.

Dr. Alan Stolier: Yeah. So we've reduced it, but eight out of 100 for 90% reduction in risk and about four out of 100 for a 95% reduction in risk, it's still at least... It's a tremendous risk reduction, but it's not 100%. And it's really important that we, as surgeons who talk about these procedures, realize that women still can get cancer. This is, however, the biggest reduction in risk that we have today. Of all of our options, this is the big one.

Jamie DePolo: Preventive mastectomy surgery, has that come along the same way that preventive ovary removal has? Is recovery time shorter now? Are there new techniques, all those kinds of things?

Dr. Alan Stolier: I think in some ways, in a kind of a strange way, recovery is probably a little longer. Only in that, as I said, in kind of a strange way. And the reason it's strange is because years ago when we did preventive mastectomies, we did not do reconstruction. And so reconstruction... So recovering from just a mastectomy is rather quick, 2, 3 weeks, you're pretty much getting back to your old self. But when we add in reconstruction, depending on the type of reconstruction we've added, it prolongs the recovery time. And now you may be talking about 4 to 8 weeks to really, not so that you can't -- You can walk around, but that you feel like your old self again. So for only that reason, it's because of the tremendous strides in reconstruction, the time to recovery has gotten actually a little bit longer.

Jamie DePolo: Okay. I'm curious, too, is there a difference in the decrease in risk depending on the type of genetic mutation a woman has? So for example, say I have a BRCA1 mutation, I have preventive mastectomy, somebody else has a BRCA2 mutation and has preventive mastectomy. For both of us is it between 90 and 95%, or is it different depending on the mutation?

Dr. Alan Stolier: Well, it seems the best we can tell right now it's about the same. It's about the same. The age in which you develop it is a little bit different, and there are likely certain mutations that affect your development of breast cancer more than others, but we haven't kind of teased those out yet. Hundreds and hundreds of different mutations have been described, but we haven't teased out which ones may be causing women to develop their breast cancer at an earlier stage or higher risk -- some might be 98% and some might be 70 or 50%. But we haven't teased those out, we've just looked at them more as a group of women. So it's about the same. The risk is about the same. The risk reduction seems to be about the same.

Jamie DePolo: Okay. Now, is there a woman in your mind who benefits most from preventive surgery?

Dr. Alan Stolier: Well, I think that the younger women tend to have more benefit, and clearly the reason that they have more benefit is they have more years of risk. For instance, if you say, "Well, what is the risk of a woman developing breast cancer who finds out that she is carrying a breast cancer gene mutation at age 20?" Her risk is a certain amount. It might be 80%, it might be a little less. But now take someone who just finds out and they're 55 years old. Well, they have a much shorter time, so their risk is less. They've already used up some of their risk years, as we say. So it's younger women who tend to get the most benefit because their risk is higher.

Jamie DePolo: Okay. Are there any women who, in your minds, shouldn't consider preventive surgery?

Dr. Alan Stolier: Sure, there are. There are some women that have enough... In medicine, we call them comorbidities, but essentially other illnesses that can interfere with their life. They may have significant heart disease. They may have significant kidney disease. Maybe they might, in the future, require a kidney transplant. There are many... If a woman has enough of other types of illnesses that might impact their longevity, we may in fact decide that doing preventive, or risk reduction, surgery is not valuable to her. Women who are at a certain age -- it's different in each situation because some women who are 65 years old have a lot of other problems going on and some that are 65 years old look better and are physically better off than somebody who's 40 years old. So it depends on the circumstance. But I think as women age, we get a little bit more reluctant to make a major recommendation that they have risk-reduction surgery. But it's a case-by-case situation.

Jamie DePolo: That makes sense. That makes sense. I'm curious, too, do you require a woman to have genetic testing before doing preventive surgery or is a strong a family history enough of a reason?

Dr. Alan Stolier: Well, it's kind of a complicated question and probably the answer's complicated, but the bottom line is no, we don't require it. Many women who have family histories that would bring you to your knees test negative for the breast cancer gene. And very early on in the process of genetic testing, which I began back sometime in the late '90s, I was told something by one of the members of the company at that time that was the only company doing genetic testing, and I've kind of held on to it all of these years. And that is that family history trumps genetic testing. We don't know every single gene. We don't know every single gene interaction or the multitude of genes that go into affecting the risk or the hereditary risk of a woman. We know the biggies. We know the BRCA genes and we know others, but there are some gene interactions, there are things that can affect the functioning of genes whereas we don't see a mutation, that gene is not functioning at full tilt. And right now, since we can't identify them, we need to look at family history just as much as we look at the results of the gene test.

So no, the bottom line, we don't require it. We're careful. We're certainly much more careful in women who do not have or have not been tested. We would encourage them to test for many different reasons. Because many times, they are assessing their risk as tremendously high, and at the end of the day, once they get their gene test back, they all of a sudden find out that theirs is the same as any other normal woman walking down the street. So we encourage it, but it's not mandatory.

Jamie DePolo: Okay. And going back to when we were talking about the differences in risk, does the type of risk-reducing surgery you might recommend, does that vary based on the type of mutation a women has?

Dr. Alan Stolier: No, it does not. We do essentially the same procedure whether you carry a mutation in the BRCA gene, BRCA1 versus BRCA2, versus some of the other genes that we're becoming more familiar with now. So it's exactly the same because the risk seems to be about the same.

Jamie DePolo: Okay. Okay. And also, too, I know this is a question I've seen a lot on our Discussion Boards, is there an optimal age for protective surgery? I know you talked about a younger woman finding out she has a genetic mutation and she obviously has a lot more years ahead of her than someone who's 50 or 60, but is there an optimal age to actually have the surgery done?

Dr. Alan Stolier: Well, that is a really tough question, so I'm going to answer the part of the question that we have kind of an answer for and a recommendation for. And let me just start off talking about tubes and ovaries. Because there's been a recommendation by several organizations, and that recommendation is for a woman to have her tubes and ovaries removed somewhere between the age of 35 and 40, or earlier if she's completed her family in an earlier stage.

There's a little bit of a nuance here, though. This is when the different BRCA genes come into play. The BRCA2 gene, women with BRCA2, number one, have a lower risk of ovarian cancer to begin with. Their risk is somewhere in the 25% range compared to the near 45 to 50% for a BRCA1 patient. Most importantly, women with a BRCA2 mutation tend to develop their ovarian cancer at a later age, about 8 to 10 years later than the average BRCA1 patient. And therefore, they have tweaked the recommendation for a woman with a BRCA2 mutation to have her tubes and ovaries removed somewhere around 40 to 45 years old, as opposed to 35 to 40.

Now, that doesn't mean that all ovarian cancers occur after that time. It doesn't. It might mean the average ovarian cancer might occur at 50, but it doesn't mean that all of them do, because some might occur in the 20s. So it's almost impossible to figure this out so that when you make a recommendation it applies to every single person. Because you have some younger women in your family that had ovarian cancer at a much younger age, then I think that has to impact your decision as to when to have your own ovaries removed.

Breast cancer: whole different ballgame, no strong recommendations. For us, we see a fair number of mutation patients, and most of our patients are in their 30s and 40s when they undergo prophylactic surgery, but there is not a strong a recommendation as to when one might proceed with this. Some say that you should use members of your family and when they developed cancer themselves. For instance, if you have a fair number of women in your family that have had breast cancer and they were all in their 40s and 50s, then you should be thinking of your mastectomy about 10 years before the youngest one developed breast cancer. So if the youngest one was 45, you might consider 35 to 40 as a good time. But it's not a perfect world, and many of the cancers that people develop because they have a mutation are developed by chance. And we still don't have a good hold on timing for mastectomies, prophylactic mastectomies. Many times, it's when women have first found out that they carry the gene, and that's usually the time that they're most concerned.

Jamie DePolo: Okay. Do people usually decide to have one surgery before the other or does that not matter?

Dr. Alan Stolier: It probably does matter. Remember, right in the beginning of our conversation, we noted that removing the ovaries reduces the risk of breast cancer, so I would say that it has several things. Number one, if you're totally free to make a decision without a lot of other outside factors, then it would be nice to have the ovaries and tubes removed first. However, it's not the way things generally... Because there are more breast cancers than there are ovarian cancers. And so many times the process of thinking about what to do is interrupted by developing the cancer. And if a woman develops a breast cancer then obviously the removal of the ovaries and tubes will be put off until after she has completed her entire treatment, and that treatment might include other chemotherapy or surgery, so it's variable.

But if you have your choice and the age at which the women in your family have developed their cancers are very similar, then removal of the ovaries first makes sense. If there is no ovarian cancer in your family, but tons of breast cancer, then maybe removing the breasts makes more sense. So very individualized as to which way you go.

Jamie DePolo: Okay. We've been talking with Dr. Alan Stolier at the Center for Restorative Breast Surgery in New Orleans. This is part 1 of a two-part podcast. Dr. Stolier, thank you so much, and I can't wait for part 2.