 Dr. Lindau is the Director of the Program in Integrative Sexual Medicine or Prism, a program that provides care for and studies female sexual function in the context of aging and common illnesses such as cancer. Dr. Lindau's laboratory also focuses on urban health improvement and fairness in health care. Dr. Lindau is the Director of the Southside Health and Vitality Studies at the University of Chicago's Urban Health Initiative, which spreads knowledge that people in communities can use to sustain excellent health and vitality. Today, Dr. Lindau will present a talk titled, Ethical Care of Women with Cancer. Please join me in giving a warm welcome to Dr. Stacy Tesser. I'm getting that set up. It is a dubious honor to be the first speaker, but I'm going to take it as a true honor. And I'll say that, first of all, congratulations, Mark and Anna, who I know has been a tremendous supporter through the 30 years, and really to everybody because the center is the collective of all the people who are part of it. I think it should be a call to center of excellence and if not maybe a center of gravity, but truly it's been an important intellectual home for me and I think many of the people who are here today. I was actually, I'm reminded, had a little flashback this morning of being invited to the first grade class at the lab school many years ago to speak on the topic of babies and this alert alarmed some parents because they knew that I study sexuality. A father called me the night before to say, are you going to use the P word or the V word? And I said, if I must, I will, unless you have an alternative suggestion. I'm pretty sure he hung up on me at that point. So it's, you know, this will wake you up, this talk will wake you up and I want to acknowledge that when we speak about cancer, especially breast cancer, I think it's fair to assume that virtually every person in this room knows somebody who's been through breast cancer. Some of us in the room have had breast cancer ourselves and some of us, maybe a few of us are actively coaching or supporting someone who has a new diagnosis right now. And for you, I hope you'll leave this lecture with a tool that you can use to support that person. So this cartoon of the world, of course, it's a cartoon because we don't have the cancer prevalence data on the whole population. There are millions of people who don't live long enough to develop cancer and millions of people who die with cancer and we never know and I think these numbers will corroborate that. But of the people whose diagnosis we know, a third of those diagnosed with cancer in the world are people with breast cancer. There are 6.3 million breast cancer survivors worldwide and more than half of these survivors are here in the United States. One in three of 3.5 million women in the U.S. have undergone a mastectomy and 100,000 U.S. women have one or both breasts removed every year. And this number is growing because of legislation that enables payment for mastectomy and reconstruction, including for women who are known to be at elevated risk for breast cancer. So a brief anatomy lesson. The breast is an interesting organ with diversity of features, but if you believe the medical physiology texts, you would think that the only important structures are the lactiferous ducts. Most medical physiology tests describe the function of the female breast as lactation, period. Mastectomy involves removal of all the tissue of the breast, modified mastectomy leaves the pectoralis muscles in place, a total mastectomy removes the breast tissue but not the lymph nodes. And here's a picture from the late 1880s that shows the radical mastectomy procedure. So this is work of William Halstead and colleagues at Johns Hopkins. The radical mastectomy procedure also removed both pectoral muscles, the major and minor, all of the lymph nodes. This procedure was done under ether, you tell me, but it's a traumatic procedure to say the least. It took almost 100 years for surgeon scientists to demonstrate that a total mastectomy was as effective as this radical procedure. There's been innovation in breast reconstruction over the last 40 years. In 1971, we see bilateral mastectomy with reconstruction, so we have implants that can be used to restore the form. In 1991, we see nipple sparing mastectomy, a procedure mainly available to women who don't have breast cancer but who are removing the breast due to elevated breast cancer risk. We see ASCO issue, its first guidelines on use of sentinel nobiopsy, which allows a less morbid procedure, less swelling of the arm or lymphedema, which can be very traumatic. In 2008, we see 3D nipple tattooing. In this patient on the right, you see the native nipple. On the left, you see the tattooed nipple. The physical appearance can be quite good, but the nipple would be flat to the touch and has no function as a nipple other than its appearance. What else might the breast do besides lactate? Here's a small study of 46 women who were asked about the breast sensibility after bilateral risk-reducing mastectomy. These are people who were able to have skin sparing and nipple sparing procedures. Of 46 women, more than 30 say they have no sensation in the nipple after the surgery, and 40 of 46 say they have no ability to feel sexual sensations in the breast after breast surgery. Given this, we would assume that women would be clearly counseled about the loss of sexual sensations in the breast after surgery, so let's take a look to see how that's going. I will say that based on now 10 consecutive years of caring mostly for women with cancer, seeking to recover their sexual function after treatment, half of those are breast cancer patients. We've had to develop our own conceptual model of breast function. We really can't find one in the literature. There's a heavy emphasis, as I've just shown you, in the technology around breast form, around restoration of breast form, very little to say about the functioning of the breast other than for nutritional purposes. But women tell us that the breast is important in the sensory or sensibility domains of touch, pain, pleasure, pressure, thermal regulation, so not only do the breasts keep the chest wall warm, but the breasts have temperature, and so when somebody touches the breast, even the woman herself, and it feels cold, it's a distressing sometimes experience. The breast has range of motion that's important for sexual function, important for other daily functions, and there's the nipple areolar complex erection, and this is something that seems we're really struggling to talk about. The relationship between form and function generally goes, if there's a causality to this relationship, from form to function, form drives function, but women who've lactated, especially more than one child, and more than, you know, for a short period of time, or women who've been through menopause know that sometimes function can drive form. There are probably factors that mediate and moderate the relationship between form and function. There are intra-psychic and bodily factors for the woman herself, and there are social factors that we think affect this relationship. And I won't read all the quotes, but here is qualitative evidence from the patients we care for that underlies the conceptual framework, and a couple that I think are really important to understand. A woman who had her breasts removed says, it's not just sex, I can't feel a hug. So when we counsel women about mastectomy, do we say, and by the way, you'll never feel the hug of your child or grandchild, not on your chest wall the way you're used to it, or my nipples don't respond, my breasts are cold, we can't get aroused. So the nipple erection is a very important physiologic component of the female sexual response cycle, and it's important to the partner's sexual response cycle, too. So stimulation of the breast causes nipple erection, which is then arousing for the partner, which might contribute to the partner's penile erection in the case of a male partner, which then engages a positive feedback loop. Without that responsiveness, some couples find it very difficult to become aroused. They look great in sweater, but they feel dead to me. They think about the cognitive dissonance there, or the surgeon made my breasts too big, he said they don't make implants as small as me. Surely we could find a way to make smaller implants. So what do the cancer treatment guidelines say? Here are guidelines from the National Comprehensive Cancer Network, mastectomy results and the loss of the breast for breastfeeding, loss of sensation, we're getting close there, but we don't say anything about sex, loss of the breast for cosmetic body image and psychosocial purposes. Nowhere do we say that loss of this very important sexual organ might cause loss of sexual function. So what could we do to try to solve this problem? Well, let me just give one very simple suggestion. We could just simply ask women before they make a decision about their treatment for breast cancer. We could ask them, do you have any problems with your sexual functioning? Now this is a question that the GYN oncologist here added to their patient intake form for the GYN cancer patients 10 years ago when we started the clinic. It turns out people answer this question. We've studied it, there's no evidence of harm when you ask people this question. The real problem is we ask, we get a response, and then we forget to refer them or address the problem. That's an issue. For breast cancer patients under the chest wall section, we could ask, are your breasts important for your sexual function? Now that obviously doesn't solve the entire problem, but it does signal to a woman that we regard these aspects of her function as relevant to her breast cancer care. It also allows us to establish whether there are pre-existing problems, which can help a woman understand why she's having problems after treatment. Is there any hope? Well, when we look to men, prostate cancer, which is the most common cancer men survive, obviously also a cancer that affects the sexual organs, we see that it is possible to counsel men about the expected consequences to their sexual function when making decisions about treatment for prostate cancer. So this is 2017 guidelines. It updates earlier guidelines. We've been talking about this for a while in prostate cancer. So what you see here are just three excerpts from the statement. We're talking about different treatment types. You know, it might be prostatectomy, radiation. Oh, we talk about what happens if you choose not to intervene. What happens to your sexual function if we just observe you? Robot assisted radical prostatectomy, nerve sparing. And we use words. We are recommended to use words when we're talking to men that don't just talk about the sensation. We talk specifically about a reptile dysfunction, ejaculate, orgasm, all the words that men need to hear to understand that the decision they're making will have real and serious consequences for an important aspect of their function. We do not see any words like this in the conversations between doctors and patients for the most part, nor in the guidelines for breast cancer treatment. Well, maybe women don't care. I mean, maybe the reason we don't counsel them is it's not material to their decision making. But what we see here is a study of BRCA carriers. These are people who are at known elevated risk for breast and ovarian cancer, who opted out of risk-reducing surgery. It looks like, actually, sexual function is an important factor that explains why women opt out of these risk-reducing surgeries, which will reduce their risk by several fold. It's not modest risk reduction. So concern about libido is really important for prophylactic ufrectomy. Sexuality concerns more generally. So it turns out women do want to know about this before maybe they make their decisions. Well, what do we know about the risk of loss of breast function, even though we haven't done a good job of defining breast function? We do have some clues about the risk of poor outcomes. Well, 100% of women who have the breast removed in a total mastectomy procedure will have numb breasts in the words of patients or loss of sensation after mastectomy with reconstruction. We counsel women about plenty of other consequences of treatment that are far less common than 100%. 20% to 30% will experience loss of mobility or ongoing discomfort due to scars and pain, which can also interfere with the sexual response cycle. Between a third and three-quarters, depending on the procedure and other contextual factors, will have a loss of sexual function using standardized validated scientific measures of sexual function. And in addition, women who undergo these treatment, the mastectomy procedure are commonly also undergoing hormonal castration procedures. The ovaries are being turned off by chemotherapy and anti-hormonal medicines that are life-saving. Please don't take this as a statement that we shouldn't treat breast cancer. Of course we should, but we need women to understand the consequences and we need innovation to help mitigate those. So this is a comment that I haven't heard once. It's a comment I hear every single time I go to clinic. Nobody told me, so I thought it was just me. I thought it was in my head. And when I hear that, I flash this image of the radical mastectomy and I think, ma'am, this isn't in your head. It's in your chest wall. It's in the amputation of your breast and it might also be in your clitoris and your vulva because you've lost sensation as a result of your depletion of hormone therapy. Remember what I said? A simple solution would be just to ask women at baseline. Do you have any problems with your sexual function? Is your breast important for your sexual function? She would know then. It's not just in her head because we're asking about it. When we don't talk about it, people feel alone and ashamed. So recent history, January 29th, 2017, the New York Times headlines on the front page. Rents Prebis is still in the White House defending the immigration ban. We have lawyers mobilizing at airports. We have Silicon Valley going from ambivalence to anger at President Trump. And on the same front page, we have breaking news, after mastectomies and unexpected blow, numb new breasts. Now I was happy to see this headline because we were in the process of writing a proposal to the National Cancer Institute to try to solve this problem. So this became the first line of the proposal. But we've known since ancient Egypt when these procedures were first done that the breasts would be numb, the chest wall would be numb after the breasts were removed. And we've known since we did the first reconstructive procedures that the breasts would be numb. So here's a woman who's quoted in the story who says that she would still have had the procedure but that she just wished that she'd known. There's a difference between... they said there's going to be a difference in the sensation not that there wouldn't be any before you go in shouldn't you know the facts. And all of the ethicists in the room recognize this as an autonomy issue and an informed consent issue. And one of the surgeons quoted in the article says you know we don't want to give people false hope. One of those things that's regarded as a holy grail breast reconstruction is the restoration of sensation but no one has shown in any scientific article to date that we're able to return sensation in any reliable way. These are words we could just say to women when they're making decisions they're not doing these procedures but we don't. So we have a problem of our atrogenesis injury caused by the healer we have a problem of beneficence and we have a problem with justice and justice has been the ethical pillar that really gets me angry the one that drives my work and in this case I think I've made the case for the injustice. We're injuring women not because the procedures they're choosing aren't important and good but they tell them what they ought to expect after the treatment. So I'm going to propose an idea from truth and reconciliation which most of us would associate with restorative justice from apartheid South Africa and I don't mean to overstate. Please don't take it wrong I'm inspired by the idea of truth and reconciliation between doctors and patients. So what could we do to restore women's feelings about the problem that we have here at large scale well we could assess women's sexual function pre-treatment so we're signaling to them it's a real issue we could admit to women that loss of breast sensation therefore sexual function is an iatrogenic problem we could implement the counseling guidelines just like we see for prostate cancer into practice we could offer treatment to help women preserve and recover their sexual function even without the breast there are plenty of women who can have any made need help to get there and we can advocate or even innovate new treatments ourselves. I'm going to quickly tell you that there is hope again from the male medicine side of the world we have achieved penile transplants for men. First transplant attempt was in China we've sent many guests from China today interesting first case this was a successful transplant about a month later the man and his wife asked to have the penis removed the psychological aspect of having another trans penis was more than they could bear. There have been repeated efforts in South Africa there's a big problem with botched circumcision in South Africa so there have been some efforts there and in every one of these instances urination erection sexual function were all considered the main important outcomes and just earlier this year from Hopkins we see a veteran receive a full penis transplant meaning penis and scrotum doctor lead for an update on how this patient is done because the outcomes haven't been reported and I haven't heard back but we're optimistic he'll regain near normal urinary and sexual functions so what if we had the same approach with breast cancer or our treatments we're optimistic she will regain normal sensory and sexual function after her reconstruction for mastectomy. So one other one resource I promise to those of you who might be supporting people making these decisions now is a resource called woman lab this is a web based platform with everything we know on this topic one patient at a time one publication at a time is too darn slow when I hit 50 I needed to put the pedal to the metal so everything we know is available publicly and we've published this one PDF document you can print and send to a friend who's making these decisions questions you should ask your doctor before making decision about cancer treatment I want to thank the women in my lab who work on these issues every day especially Kelsey Paradise who helped put together this talk Lily Lehrer who those of you from the ethics center here I know is a medical student and we have a patient advisory board which also includes an ethics fellow I'd be happy to take a couple questions thank you so much I was sure somebody would tell me you can't equate the penis and the breast but maybe that's an easier thing for me to say than somebody else to say yes the main surgical innovation has been in the realm of nerve sparing procedures and those procedures are mostly available to women who either have early in situ cancers or who are having the breast removed preventively about 5100 women the data are a little outdated in the United States I think that's as of 2013 or 2014 had chosen prophylactic bilateral mastectomy and even in those cases while there is some there is some nipple sensation it seems the sensibility of sexual function is really very low we have to think differently about innovations to solve this problem I mentioned the NIH grant we are working on ideas for that we received a 1% house score from NCI and we're waiting to hear on funding so maybe we'll have some new ideas soon yeah Marshall Marshall Chen University of Chicago Stacy can you tell us a little bit more about what you recommend regarding the public messaging of this issue I mean taboo topic is there anything beyond just the pure facts and truth that you're saying that you think would be helpful in terms of the messaging for actual uptake by decision makers thank you in the breast cancer literature the topic of female sexual function does come up but not until the survivorship guidelines so we really think the simplest scalable solution is to say yes we should support women in the survivorship phase to recover their sexual function but it is far too late to start with survivorship we could really adopt some of the important language from the survivorship guidelines right into the treatment guidelines there is a section of the treatment guidelines that focuses on fertility preservation in the treatment phase in the counseling for treatment phase and even contraception so if we needed a place to even insert it it looks like there's a place that we could add sexual function thank you I see I'm at time but thank you