Changes in Intimate and Sexual Relationships After Cancer Webcast October 27, 2008 Sylvie Aubin, Ph.D. Introduction

Transcription

1 Changes in Intimate and Sexual Relationships After Cancer Webcast October 27, 2008 Sylvie Aubin, Ph.D. Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. Introduction Hello, this is Andrew Schorr and welcome to another edition of Patient Power sponsored by the Seattle Cancer Care Alliance where every two weeks we connect you with a leading SCCA expert and talk about issues that are important to cancer survivors and the people who care about them. In today s discussion we re going to talk about something that I know as a leukemia survivor I certainly thought about as did my wife, and that is the changes in intimate and sexual relationships after cancer, and with us is an expert from the SCCA and a clinical psychologist, Dr. Sylvie Aubin, and she is in the Department of Psychiatry and Behavioral Sciences both at the Seattle Cancer Care Alliance and the University of Washington Medical Center. Dr. Aubin, thank you so much for being with us. Oh it s my pleasure. All right, well I know you have a support group that you meet with every few weeks. Is it prostate cancer patients and their partners? The history of this support group is yes, originally it was a support group for spouses, wives or partners, of men with GU cancers; that is prostate, testicular, or bladder. Then since there is so much need I extended the support group for couples dealing with cancer, any kind of cancer. The support group happens every third Wednesday of the month at SCCA from 1:00 to 2:00. Let s talk about that. There s a story, I ve interviewed hundreds and maybe even thousands of patients, and I vividly remember the story that I ll share because I think it s representative. This was a woman who had had a mastectomy, and she came home from the hospital. She was taking a shower, and her concern was would her husband still find her attractive? She tells this story of this man she loved very much coming into the shower with her, just getting in the shower, and giving

2 her a big hug, and they actually made love in the shower, and of course that said it all. That was one of her, you know, she was worried, was she a woman anymore, was she attractive, and she felt confident that she could beat the cancer, but she wasn t confident that her relationship could go on in as meaningful and as intimate a way as it had been before. That must be a common concern. Absolutely. Actually it s interesting that some do not have body image issues, but if you understand sexuality in women, very often the sense of self and being attractive to your partner is very key and fundamental to your own sexual desire. So the majority of women who come to see me after they ve had a procedure, either a lumpectomy or a mastectomy, are extremely concerned. It s not only about their breasts, but it s also about their overall body image. A lot of them have also been placed on a treatment that will make them gain weight, so yes absolutely a very, very big concern for the majority of women is, I feel change in my body image. I don t feel as attractive, and will that impact my partner and his attraction to me? A lot of women have very vivid concerns of a lot of My sexual pleasure and arousal came from my breasts, my nipples, and unfortunately I can t feel anymore some sensation, especially if a woman has had a double mastectomy. There s a loss of sensation from this area, which for some women is very dramatic. So yes it is an issue that we can discuss. We re going to get into some specifics and give people some strategies on how to feel better about themselves and in their relationships, but it s not just women. Potential Sexual Side Effects of Prostate Cancer Treatment So here we are. I m probably a typical guy, and so I went through leukemia treatment and felt sick and tired and all that, and then job one was to beat the cancer of course, but really, and my wife and I of course dreamed that there would be life after cancer, and I m happy to say now I m 12 years later there certainly has been. Congratulations. Thank you. So we got past the fears of survival and tried to put our life back together, but I think me, whether it s me with leukemia treatment and fatigue and nausea, or men who have prostate cancer and maybe have side effects of the treatment that are, I don t want to say mechanical as there are psychological as well, but just have difficulty in maybe performing, if I can say that, in the way they thought they should.

3 Oh absolutely, yes. How do we get past that because it s a male issue as well? Yes, yes. So if I understand your question you re looking more now at a population of men who have had prostate cancer and treated for it? Yes, sure. Absolutely. If you look at the literature on prostate cancer and the impact of any treatment whether it s, and I ll talk about the treatments more specifically, but whether it s the prostatectomy; the radiation; chemo or hormonal therapy; or ADT, androgen-deprivation therapy; all of these treatments will impact sexual function. Now depending on which treatment it will either be your sex drive, your orgasms, or your erections or unfortunately all of the above. Let me start with the prostatectomy because that s the most common treatment choice for men diagnosed with prostate cancer. So there s a whole lot of literature on what kind of prostatectomy you ve had in the sense that was there any sparing of the nerves and of course the more sparing of the nerves the more a man will be able to preserve his erections. Now I will say this because the majority of men expect that even though, Oh both of my bundles of nerve have been spared; I should be having an erection. Well, you know, the first thing is it depends on your age, and it depends most importantly on what we call baseline sexual function. So prior to your surgery if you ve had problems in your erectile function you will also have problems after the prostatectomy and most likely worse from a prostatectomy even though you ve had nerve sparing. What happens after a prostatectomy is that the erection will not be as consistent, will not be as rigid like for example in a man who has had his nerves spared in both bundles, he will complain that, Well I can get one, but I just can t keep it for very long. Some are not even able to sustain it until they have the orgasm. So definitely there is an erectile function change after the prostatectomy. Some men also have a change in their urinary function, which is very troublesome for a lot of men that have this problem. For example, If I have an orgasm and I am leaking this can be very embarrassing, and a lot of men what happens

4 unfortunately is and very curiously some of the research has shown and my experience is that even though a man can have a controllable urinary function and have erectile function, the couple will stop having sex for an extended period of time. Now again, the number-one factor of a couple resuming their sex lives is the importance of their sexual activities prior to the treatment. If before the treatment a couple or an individual because I realize that some men are single out there, either same sex or heterosexual, the importance you placed on your sex life will not change with cancer in the sense that after cancer this will be a big, big determinate of your mental health. Some studies have even shown that it can relate to depression in men. So yes, sexual function is an important part after cancer, especially for people that it was a very central aspect of their lives. Again, there are a lot of myths about sexuality, and one of the myths is oh you know once you re past a certain age sex is no longer important. Well, that is not true. I have had in both my support group and in my consults I ve had men ranging from as young as 19 all the way up to years old. So again, the challenges will be different, but age is not a factor as to whether sex will be important or not. Let me ask you a few questions Dr. Aubin. Please do. Strategies for Resuming Sex and Intimacy So first of all, people who are listening to this may well be diagnosed with cancer or even in the throes of treatment, or they re post treatment or a partner or a spouse, and they re worried about this. From your experience, can people where sex and intimacy is an important part of their life and was prior to cancer, can they regain the satisfaction of that? They may need changes. They may need strategies, but can they get there? Oh absolutely, absolutely, and I would like to scream a loud Yes! One of the biggest challenges that I ve had here is meeting those poor patients and couples because I meet, if the patient is in a couple, I meet with them 90% of the time unless they want to meet alone, but absolutely. There is a very good and satisfying sex life after cancer, absolutely. I m not saying that it s not challenging, but it is possible, absolutely.

5 Let s give them some specific examples. We can t apply it to every cancer, but then we re going to talk about communication, and I think that does. So let s go back to those men. Sure. So they have erection problems let s say. There are devices and strategies to help them, right? So let s give an example, if you re talking about erectile function. Sure. So a couple comes to see me. They ve had a treatment. Let s not be specific on the treatment. Well of course you know the first line of treatment and the least invasive of treatment for erectile dysfunction are what we call the PDE5 inhibitors. There are three types of PDE5 inhibitors as you know; Viagra, Levitra, and Cialis. They re all the same component except chronologically; they came into the market at a different time. Since they are all the same price, if you want more mileage out of it, you are better off with Cialis. It stays in your body longer. It is usually more tolerated, the side effects, if a man is to have side effects. The usual dose is to take the standard dose. There are 10 mg or 20 mg, but I always tell guys, you know, if you re going to pay that much money get the full dose of 20 mg. If after using the PDE5 inhibitors a man is still having a problem with maintaining or getting the erection, then we switch to the second and the third line of treatment, and they don t necessarily come in that order. It could be either first there are two types of injections. One is call the intracavernous injection; which is essentially injecting a substance in the corpus cavernous of the penis, which is a very small needle, you know, we can think of diabetes, it s very small; or what s called a MUSE which is an injection through the ureter which deposits pellets which melt, which is the exact same substance as the injection. Now studies have shown and my experience has been that the ICI is better in terms of response. That s the injection? Yes.

6 Versus, quite frankly, I m familiar with these, not personally, but I have done programs on what it s like otherwise. It s like a little pill or a little pellet that a man inserts in the end of his penis. That s the MUSE. Right. So either way though, so we ve talked about a second line, and then is the third line, Dr. Aubin, the pumps or even the implants? Absolutely, the vacuum erection devices. Now let me make a pause that I just want to go back on the second line of treatment. If you are going to go for these injections just make sure you meet with a doctor or a nurse practitioner who has experience in those because the dosing needs to be adjusted. You may not respond at one dose, but it may need to be increased, so don t give up just because one time you haven t had the response you want. All right. I want to switch. So the point of all that though for men who have erection problems, maybe post prostatectomy, there are approaches that can help you get and maintain an erection. Yes. Common Problems and Solutions for Women Post Cancer Treatment Now women have a different issue. So first we talked about the body image related to breast surgery, but they may have had vaginal surgery or other approaches that affect that, so the things like sensation, vaginal dryness, pain, even pain with intercourse, what do we do about that? Yes, yes. Absolutely, yes. The two most frequent complaints of women are a lack of or low sexual desire or arousal or lubrication problems, and the third one as you mentioned pain, burning, tightness, discomfort during intromission. Let me start with the second one; the first one is sexual desire; there s more components to talk about. Typically if I look at a lubrication problem, I will recommend a very good lubricant for women. So there are a lot of lubricants on the market. One of my favorite sites that we have here on the West Coast and in

7 Seattle, and I believe they have one in San Francisco and L.A. I m pretty sure is a store, and you can visit that store, called Babeland at Babeland has an educational approach to healthy sexuality, and they have a very good line of lubricants. There s a very good lubricant that you can try, for instance, that is silicone based. It s very safe, nonallergenic, that you can purchase online or you can go to your local sexual store. Get a good lubricant. It is very, very important. Now if there is pain or burning what we normally do is a combination of two things. Of course when there s pain and there s burning at intromission there is a lot of anxiety. So what anxiety causes is a lot of women will basically clam up, and what happens is it will increase the pain or the burning three or four times. So working with a therapist, it could be a nurse practitioner or someone in the field, to have a combination of breathing exercises, contracting and releasing of the pelvic muscle area, and insertion. So the insertion usually is gradual. So that can be achieved either through with the fingers or they do have little probes that are shaped like a penis, and they go from very small to bigger. So usually this means that there is breathing, practicing, and as you can tell the partner is going to have a very important role in that. So let s go back to sexual Let s go to desire, yes. Yes, let s go back to sexual desire and the lubrication issue because I haven t addressed that with this. So for women who are either post-menopausal or menopausal or for women who have had breast cancer or OB/GYN types of cancer, well it is possible, and I have seen it in my clinic, that their provider prescribed a very low dose of estrogen or what s called these newer, recent contraceptives, which release a very, very small dose of estrogen. For example Estring is one. You can also use a cream or a gel that can be applied on the labial area, which is also hormonally based. For some women this is off limits. Their providers will not prescribe because of the type of cancer and whether they are positive or negative to female hormones, but there is this whole aspect of sexual desire in women and in men I shall say as well that is tied to one, your body image, and also your relationship with your partner. The answer as to how do I regain my sexual desire, is well there is some work that you have to do as an individual, as a person, to reconnect with your sexuality. One, your body image, and two, anything that you were doing sexually before for yourself. So even if it is self caressing, looking at the erotic literature, or anything that connected you in the past to sexuality. Even if you don t necessarily have the sex drive, there s one sex drive that I call more of the provoked one or the one that is invoked, which means that well you know I wasn t that hungry but once I started

8 eating I got hungrier and hungrier. So it is a part that as an individual, either a woman or a man, need to work on after cancer because cancer has taken for the majority of my patients and couples almost entirely their mental space, and rightfully so. Right, right. Yes, yes, I mean just from my personal experience we re so focused on beating the cancer Absolutely. because our fear is we won t survive. So then you kind of pinch yourself and you say, okay I am surviving, can I have the quality of life I want, and certainly sex and intimacy is part of it. Here s a suggestion, and I don t know if you wrote this, but here was a suggested question that people could do to try to initiate discussion with their partner. I ll just quote it. It says, I know it s tough to talk about, but I think we should discuss our sex life. We ve only made love a few times lately. I miss being close to you. I worry that my scars may be a problem. Can you tell me how you feel? Now this is someone trying to initiate discussion with their partner, and I recognize that some people may need help through a support group or counseling because this is a tough discussion to initiate. It is. It s a very good question to ask. I like the way it s framed. It s very specific. It s using the I statement I would like because one of the things I tell patients is that you know your spouse is waiting for you. So in the majority of couples the spouse will try to read the partner and say, Oh I don t know if he or she would be up to it. Well let me wait. He or she will let me know. So one thing that I do suggest as a very, very bottom line very basic is to start with communication and conversation in exactly that way. I ve noticed we haven t had sex for quite awhile, or We ve had it, but it s very sporadic. I ve noticed that you re not making a sexual advances as much as you So being specific in the things that the patient is observing and bringing it up to the partner is very helpful. Yes, What do you think? What are your concerns? What are your hesitations? and sharing some of your own concerns like, I m afraid my scars will be a problem for you or I m afraid that I don t have as much of an erection as before. Is that a turnoff for you? What are your concerns because here are my concerns? Questions from Listeners Here s a question we got, we ve received a lot of questions. This one is from Miriam in Illinois, and I ll kind of summarize it, and it s about herself as a spouse

9 worried about what s going on for her because she s having difficulty getting past the fear of the cancer in her husband. She says, My husband Jack and I have been very happily married for five years. We re both 32 years old, have no children, and used to have an incredible sex life. Then Jack was diagnosed with acute myeloid leukemia. He had aggressive chemo and had all the side effects, and he was pretty sick from that. He s gotten past it, so now he s in remission. She s finding that while he s initiated sexual encounters several times, I ve rejected him time and time again, and he s being hurt by it. We ve had several arguments, she says, and this always ends with him begging me to tell him what he did wrong and asking if I don t want him any more and me walking out because I can t explain it myself. She says, What the hell is wrong with me? So she s desperate. Any suggestions there? Oh absolutely. So the first thing that, and this is a very common scenario by the way that I get in my consult or in the support group that I ve led. Sometimes it s the patient, sometimes it s the spouse, but after cancer there is a period where the sexual intimacy and activities either seize, stop, or they happen more erratically. Now, we can t always point to well it s because I can t have erections or because this or because we can t always point to the plumbing issues or you know the sexual function issues. Then what we need to point out is the whole grieving and mourning of the cancer experience. What does that mean to you either as an individual or either as a couple? I ve just talked about that for many, many weeks, months, sometimes years depending on what type of cancer and if there s a recurrence couples are very, very focused on the cancer experience. I would ask this particular woman well what have been your main thoughts during this entire journey. What have been your main emotions? Have you grieved? Because one of the things that I find in my practice is that for a lot of my patients and their spouse, the grieving doesn t necessarily start when you have a diagnosis. As a matter of fact, the grieving or the experience of, Oh my goodness this has happened is pretty much the day that you re done with treatment and the doctor says, Okay, well, I guess you re good to go and everything is okay, and see you in six months or three months. For a lot of my patients that s when they get hit with the cancer experience. Some right away, some three months, some six months, and some two years after that. Now is this what s happening with her? The other thing about sexuality and intimacy is intimacy. It is possible that she may have been so afraid of losing him. Yes, it sounds like that. You know, when you re so afraid of losing somebody, one of the ways that we can deal with that fear is, I d better put a distance. I d better

10 Pull back. pull back. Yes. What does intimacy and sexuality do? It really pulls you in. So I ve seen it a few times where you know, He s doing okay. He s in remission which I don t like that word remission because it means remission meaning it s going to come back or what? So from the grieving perspective of cancer, and when I say grieving I think you understand that I m not saying death. Right. I m just grieving that this has happened to us. Right, and there s a change because of it. Right. Absolutely. A grieving is a change. It s a transition. It could be we don t need to grieve the loss of a loved one through death. We can grieve, Oh, we ve lost our job or we ve changed There are a lot of small experiences in our lives where we end up grieving. Right. We re running short on time. I just want to cover a couple of things quickly and I want to relate a story because I get to do this as the host and as a cancer survivor. Sure. So when I was diagnosed with leukemia, my wife and I thought I was dead. Happily I wasn t, and treatment was able to help a lot. Then the question was what was our future, and how could I continue to enjoy life to it s fullest. We made counseling part of our recovery, and I know you ve helped a lot of people as a clinical

11 psychologist Dr. Aubin, and I don t mean to be self-serving for you, but I know you believe and we re blessed at the Seattle Cancer Care Alliance that there s someone like yourself who helps people who are going through this when it comes to intimacy and sexuality. There is help out there folks, and I think it s okay whether you as an individual or as you say preferably as a couple whether it s a spouse or even a same sex partner, whoever it may be, to explore this because it s part of life and I think you touched on something that is so important too. You don t have to give up on this when you re a certain age. Absolutely not. My dad was 92 years old. He kept working and enjoying life until he died eventually from the complications of prostate cancer, but up until that time he was going strong, and sex and intimacy were part of it. The other thing that I d say too, and I think you would underscore this is, we can t define these relationships always in terms of intercourse, but that the intimacy and the sexual satisfaction, but the feeling of closeness can come in many ways, right? Absolutely, absolutely, and that s what I teach a lot of couples is to expand what s called sexuality to include all of the closeness, the connections, the bond to the various and many ways that a couple can and have historically done. The cancer doesn t change that. The cancer puts a transition on a couple having to adapt saying well we can t do this sexual scenario any more because of X, Y, Z, but let s see what else is there for us. Right, right. Dr. Aubin, we have to have you back for one of our live webcasts because I know there are millions of questions, and we could talk, I think what s important is, and somebody wrote in about it, there was an article about this that Tamara our producer gave me where the woman who got a lot of publicity, the young actress, Christina Applegate, there was a lot of publicity about her breast cancer, and it was all about treatment and survival, and here whether you re young or middle-aged like me or older though, what about the rest of your life? Happily in so many cases we can, sometimes we can cure cancer. Sometimes it can be made chronic and you re going to have a long life. What do you do with that time and what is the quality of your relationships because that s what life is really about as long as you can pay your bills and feel pretty good. Right.

12 So really there s so much more we can talk about, and we need to talk about this more, and I appreciate you talking frankly about this because I know we need to do that. So we promise a followup with you Dr. Aubin. Oh sure, my pleasure. I want to thank you, and if people want to find out about your support group I assume they can go to the Seattle Cancer Care Alliance website. The website, exactly. Okay, so seattlecca.org. I want to thank you Dr. Sylvie Aubin, a clinical psychologist, and this is what we do on Patient Power. We do this every two weeks, sometimes live broadcasts, and I promise we ll get one arranged with Dr. Aubin to take your questions about intimacy and sexuality after a cancer diagnosis for you or a loved one, and in two weeks we will have one of our other discussions, I believe it will be a live one, on neoadjuvant therapy and dynamic imaging; that s for breast cancer with Dr. Jennifer Specht. So thank you so much for joining us for the Seattle Cancer Care Alliance sponsored edition of Patient Power. I m Andrew Schorr. Remember, knowledge can be the best medicine of all. Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you.