Ask-the-Expert Online ConferenceOn Wednesday, February 20, 2008, our Ask-the-Expert Online Conference was called Sex, Intimacy, and Breast Cancer. Leslie R. Schover, Ph.D. and Kara Nakisbendi, M.D. answered your questions about sexual side effects of breast cancer and breast cancer treatment, and what you can do about them.
- Question from Dana: I haven't been intimate with anyone since I had my bilateral mastectomy and I am scared to death of the reaction to my scars. Do most men not feel turned off by a woman having had breast cancer and the scars from it?
- Answers - Leslie R. Schover, Ph.D. I think it's especially difficult if you're not in a committed relationship because you don't have that background of love and commitment that gives you more confidence about how your partner's going to feel about you. There is also the issue of getting comfortable yourself with the way that your body looks so that you can feel good about yourself and your own attractiveness. Men are very individual in how important it is to them that a woman has both of her breasts, and usually it's the woman herself who's more concerned about her physical appearance than the man. But you do find a few men who are very rejective of a woman who doesn't have two breasts. The one thing I would add is that there's nothing wrong with wearing some sexy lingerie or breast prostheses or a padded bra that makes you feel more comfortable with how you look. Your desire for sex is so much in your head, so the more that you feel sexy, the better off that you are.
- Question from JJJ: I am having a lot of vaginal discharge with tamoxifen. Is there any way to lessen this? I don't want my partner to be freaked out.
- Answers - Kara Nakisbendi Vaginal discharge is very common with women taking tamoxifen. For some women it can help as far as lubrication during intercourse; for some women, though, it is uncomfortable. Even though there is lubrication, the tissue still feels thin and there's more friction due to the lack of estrogen. Wear cotton underwear that can breathe, and don't overly clean yourself with a washcloth or harsh soaps. Usually the discharge, as long as it's not itching and there's no unusual odor, is just a usual discharge and won't really be noticed by the partner.
- Question from Marvel: I feel like I'm never going to have the same physical appeal I once had now that I've had a mastectomy - even with reconstruction, it just isn't the same. I want to believe potential partners won't judge me based on this, but people are only human and some of them want real boobs on their partners. Do you have any insights on this issue?
- Answers - Leslie R. Schover, Ph.D. I think that what's important is finding a partner who cares about you, the whole person. There might be somebody who wants someone with real boobs, but is he the person you really want to spend a lot of time with? Because there's lots of men out there who are very loving and caring when somebody that they date has had a mastectomy and isn't quite the same. Sometimes it may help to think about whether you demand such perfection in your male partners.
- Question from Deborah: I am 45, currently on tamoxifen, and still premenopausal. My oncologist's plan is to put me into menopause after 5 years on tamoxifen and switch me to an aromatase inhibitor. This makes sense to me, but I am terrified of the side effects, particularly the sexual side effects. My husband and I have a good sex life and I really don't want to lose that. Is there hope?
- Answers - Kara Nakisbendi I think women have this concern whether they have had a mastectomy or contracted an STD, and they worry about how their partners will view them. What it comes down to is exactly what Dr. Schover says about who you're choosing to be with and your criteria. Nothing is guaranteed in your partner, who knows what issues they have to face. It's all about finding someone accepting. I assume you'll be put in menopause with a medication like lupron, which will create the menopausal symptoms like hot flashes, night sweats, and insomnia. Those symptoms can be treated with medications. As far as vaginally, you can treat locally if lubricants don't work and your doctor is comfortable with that. There are lots of ways of managing the symptoms.
Leslie R. Schover, Ph.D.
And often the combination of a vaginal moisturizer that you use several times a week, plus either a water-based or silicone-based lubricant when you're actually going to have sex, will help restore some moisture and help the couple's sex life.
Editor’s note: Recommended vaginal lubricants include Astroglide, Today Personal, Ortho Gyne-Moistrin, Moist Again, Replens, Probe, and K-Y Jelly.
- Question from Erika: I'm taking Femara and have severe problems with vaginal dryness. I have tried various lubricants but have been unsuccessful. Any advice would be appreciated.
- Answers - Kara Nakisbendi I think it's a good time to experiment with different products for lubricant. Some people use almond oil, coconut oil, or Crisco [oil] if you're not worried about condoms. There are many items you can try. Open communication is the most important so you don't feel that you're trying to hide the symptoms you have or handle them all on your own.
- Leslie R. Schover, Ph.D. I think it's crucial, and I wish all women had easy access to a gynecologist as knowledgeable and sympathetic as Dr. Nakisbendi. Women often have a hard time getting their gynecologist or oncologist really to pay attention to the problems that they're having in this area.
- Kara Nakisbendi Another important point is that a lot of times having pain or discomfort or not having the pleasure can lead to avoidance. And that brings on a whole host of other problems, one of which is worsening of vaginal atrophy, or thinning of the vaginal tissue. From there, intercourse can be more painful. Sometimes, in addition to lubricants, the use of vaginal dilators can help a woman understand her anatomy and become comfortable with penetration again in a controlled, safe way.
- Question from Hirokow: My family doctor prescribed estradiol (Vagifem) for vaginal dryness. I consulted with my oncologist, and his recommendation was to use Estring. My question is whether it is safe to use estrogen-containing medicines such as estradiol or Estring against recurrence of breast cancer. If so, which one is safer? If not, what other options are available to me and other breast cancer patients/survivors?
- Answers - Kara Nakisbendi Estradiol is a type of estrogen and it's one of the estrogens that women's bodies naturally make. As far as vaginal preparation, there is the Estring, which is a ring that has estradiol in it and secretes a small amount for up to 12 weeks with the ring in place. There are also vaginal tablets called Vagifem that have 25 micrograms of estradiol that you place initially every night in the vagina for two weeks, then twice weekly. The concern with some doctors is that the estrogen will be absorbed. There's probably a small amount of absorption initially because the tissue is so thin, but as the cells plump up with estrogen the connections between the cells get tighter and there's very little absorption. They've looked at blood levels and haven't found them to be significant. There are a few studies in women who have had breast cancers but have not seen increased recurrences or new primary breast cancer.
- Question from Carla: I had bilateral mastectomy with reconstruction 10 years ago, and now the scar tissue causes some pain. When I'm being intimate with my husband, I sometimes feel like my chest is made out of concrete - not sexy. Do you know of anything that can help scar tissue stiffness and pain?
- Answers - Kara Nakisbendi There's some physical therapy that can be done to help make the tissue more elastic and able to be more mobile. If it's more chronic, there are more localized medications or you might even consider acupuncture. It's also okay to avoid, so let your partner know what places are uncomfortable.
- Question from Marguerite: How soon after reconstruction surgery should I wait to have sex? Do I need to heal completely first?
- Answers - Kara Nakisbendi If you feel comfortable. There may be specific orders from the doctor. Just listen to your body if things make you uncomfortable. You should be fine. It could actually help the healing and the pain.
- Question from Meriberi: Hi. I'm taking Arimidex and the joint pain is really wreaking havoc with my sex life. Being in certain positions is just not possible anymore. Do you have any advice?
- Answers - Kara Nakisbendi I suggest some kind of exercise program that's gentle to the joints and keeps things moving. I would talk to your physician about supplements, whether it would be possible to take fatty acids or glucosamine. I think maintaining some strength and flexibility, so gentle exercise like yoga can help with the pain. I'm a big proponent of acupuncture, I think they have an answer for everything. Work with a pillow with positions so there isn't as much pressure on the joints. Sometimes the side effects are so severe you need to talk to your oncologist to see if there's a different aromatase inhibitor that's better than another one with fewer side effects. Some people do better on one than another.
- Question from JanB: Is it dangerous for my husband to fondle my breasts during my treatments?
- Answers - Kara Nakisbendi If it's comfortable then it should be fine. It's all about your energy levels, how you're feeling, and the overall discomfort you're feeling.
- Question from Survivor02: I have been taking Effexor, which is great for hot flashes, but my sex drive has gone down. I heard Wellbutrin doesn't cause loss of sex drive so much, but can Wellbutrin help hot flashes?
That's a good question. It hasn't been studied formally. I have some women who've done well on Wellbutrin (chemical name: bupropion) as far as mood and energy. It is weight-neutral, and doesn't seem to have the sexual side effects other medications do. It may not have the same coverage for the hot flashes as Effexor (chemical name: venlafaxine) or Paxil (chemical name: paroxetine). Some women tend to be bothered more by night sweats. If the Wellbutrin helps, you can sometimes take that at night and that will help if the night sweats are bothering you more. Just watch out because sometimes Wellbutrin can make you feel more awake, so you want to make sure it doesn't cause insomnia.
Editor's Note: Wellbutrin and Paxil are known to reduce the effectiveness of tamoxifen. If you are taking tamoxifen and are considering an antidepressant, talk to your doctor about which antidepressants are safe for you to take. For more information, please visit the Breastcancer.org Tamoxifen page.
- Question from SantaBarbara: I think chemotherapy is causing some yeast infections in me. Is this common?
- Answers - Kara Nakisbendi It's very common any time you have any hormonal shifts or changes in your immune system. And sometimes you need to treat it a little more aggressively than a typical yeast infection you may get at other times.
- Question from Curious: I've read about a testosterone cream that can be used to increase sex drive. Can you tell me about it? Is it safe for people with hormone receptor-positive cancer?
- Answers - Kara Nakisbendi That's an excellent question! The truth is we don't know 100%. But if you have a gynecologist and oncologist who work together, many doctors will be okay with you using a testosterone ointment. The creams work well, but they do tend to get absorbed more easily. The testosterone ointments can be used locally on the vulva and can help with sexual response - lubrication, engorgement, and sensation. And if you're concerned about absorption, blood tests can be done to check for testosterone levels.
- Question from BARB: I'm about to go on my first date since breast cancer treatment. Frankly, I'm terrified. How do I even bring up the subject of my mastectomy? I don't want to put him in an awkward position or waste his time, if real breasts are important to him.
- Answers - Kara Nakisbendi I suppose the question is do you want to know now or later? I think it's a difficult situation, but it comes down to your comfort level. I think, as I said before, that women tend to focus on these types of things early on and worry that it will keep them from being able to progress in a relationship. But the reality is about how comfortable you are with yourself and working toward feeling comfortable. I tell many of my patients, if you end up telling them and find out it was important to them, then they probably weren't a good person for you.
- Question from Kirsten W: I don't know about anyone else, but trying to act like sex is sexy while being bald is impossible for me! I look at my boyfriend while we're in the act, and I just feel ridiculous! Talk about a new level of nakedness. But wearing a wig in bed feels even weirder. Any suggestions?
- Answers - Kara Nakisbendi There was a great Desperate Housewives scene on this. I think it comes down to experimenting and communicating as far as what you feel comfortable with and what your partner feels comfortable with. In the show, the husband stated there was one time he wanted to pretend they weren't dealing with cancer. So she wore the wig and that was appealing to him. She felt that this is the way it is and you have to accept me for what I am. I think both are true, but I think there needs to be some play around or communicating. Possibly your partner isn't bothered by the lack of hair and it's just a fear that you have.
- Question from Ann: My husband and I were doing very well even during chemotherapy but now with Arimidex, I have no desire for sexual intimacy. As the treatment is for 5 years, how do I restore intimate relations with my husband? We cuddle and talk but it isn't the answer. HELP!!
- Answers - Kara Nakisbendi It's so difficult to see such a dramatic change and to know that it is medication related. I think communication and more play seems more to get your head into it. It's not that you can't be aroused at all; it's just that you have to work harder at it. That also goes for stimulation - it may take longer to reach orgasm, or you might be able to reach orgasm and it might not be as intense. You can utilize different sex toys or vibrators to help facilitate and enhance the sexual response. Also, the use of erotica - books or movies, things that are erotic for the woman to help with arousal. You have to feed the brain more when you're dealing with side effects from an aromatase inhibitor.
- Question from Lexi: I've been finding myself very jealous and actually angry that I have had to go through breast cancer, but that my partner hasn't. She's never been so healthy! I find myself pulling away from her intimately and emotionally. Any advice?
- Answers - Leslie R. Schover, Ph.D. I think that for gay women a special challenge of breast cancer is that you can so easily empathize with each other. And that means that the well partner sometimes pulls away because of her fear that she could be the one who's next. But it also could be the woman with breast cancer distances herself because having a healthy partner reminds her of what she's lost. The thing that is most important is to keep communicating with each other and I think it's important to let your partner know about those feelings and to talk about them. That may help the two of you feel closer, to share the experience. It's a normal human feeling, not something to be ashamed of.
- Question from Ahyay: After reconstruction surgery, is it possible I will ever get sensation back in my nipples?
- Answers - Kara Nakisbendi Anytime you've cut nerves you feel numbness. The intensity of the numbness can diminish, but I'd say with the nipples usually the sensation doesn't return.
- Leslie R. Schover, Ph.D. I think especially the really strong, erotic feelings from breast caresses is lost when the nerve is cut. But there was one study that found that when women had nipple reconstruction that felt as if their sensation returned again. So the mind is an important part of your sexual side.
- Kara Nakisbendi That's interesting, because I see so many delay the nipple reconstruction part.
- Question from Cookie: Two years since bilateral mastectomy, chemotherapy, and radiation. Our sex life is very good again, but I have bad thoughts in my head about my future and it comes to mind often, then puts me in a "funk" with sad feelings. How do I stop being so scared about the future?
- Answers - Leslie R. Schover, Ph.D. Many women have those thoughts. Sometimes they intrude when you're due for a follow-up visit. Sometimes, unfortunately, they intrude when you have sex. You can try to focus away from your fears during sex by filling your mind with a strong sexual fantasy or focusing on the pleasure in your body when you're being touched. But it may also be helpful to tell yourself that it's normal to have those fears and you're doing your best to have a happy life, and fill your life with hope for the future instead of fear.
- Kara Nakisbendi I think keeping your eyes open, keeping yourself present, and focusing on your partner will help. Sometimes changing positions - things to keep you more focused in the moment so you don't get lost in your head.
- Question from Sunnie: Help - I cannot get turned on the way I used to. I finished chemotherapy and radiation 4 months ago and it takes so long to get to orgasm now, if I do at all. Why is this? Everything feels so faint.
- Answers - Leslie R. Schover, Ph.D. One thing might be whether you're on any new medications. An amazingly high percentage of women end up on antidepressants, pain medicine, or a drug to reduce anxiety after breast cancer. All those kinds of medicines can make it difficult to reach orgasm or weaken your pleasure.
- Kara Nakisbendi If chemotherapy put you into menopause, that shift can be pretty abrupt. And sometimes your hormones can come back a little bit, depending on your age. But possibly the sexual response could come back a little bit more.
- Question from Alien Princess: I am currently being treated by radiation for my breast cancer. I would like to know if there are any safety issues or side effect issues with having a sexual relationship with my husband during the term of radiation? I just started a couple of days ago. We are in our sixties and have had a wonderfully active sex life. Will anything deter us from intimacy during treatment?
- Answers - Kara Nakisbendi I think as long as you're comfortable, as long as the skin's not too irritated or there are no concerns about infection, just listen to your body and make sure it feels good.
- Leslie R. Schover, Ph.D. I'm wondering if you have a concern about radiation affecting your partner. It's important to know that the radiation from a machine outside of your body doesn't stay in your body and can't hurt your partner. Occasionally, a woman will have a radioactive implant put in her breast as a booster for her radiation therapy, and during that time she may have special instructions about getting close to other people. But that is the exception and not the rule.
- Question from Betty: I've only recently been diagnosed with breast cancer and reading this chat has made me realize I'm not alone, but also has me fearing the future of my marriage. My husband is extremely sexually motivated. How can I get him to understand that I physically won't be able to at times once treatment starts?
- Answers - Kara Nakisbendi I think the greatest prognosis for sex lives after cancer treatment, or at least the potential for a good sex life, is having had one before. But it's important to educate your husband that some of the treatments at times are going to affect your interest in sex. We forget that men, while they may just want to have sex, really have sex to be connected to their partner, and it's important they understand it's not a rejection of them but because of the treatments that are affecting them at the moment. Again, education and telling them what's going on is important.
- Leslie R. Schover, Ph.D. I would also add that it's important not to get into the mode of feeling like you have to service your husband by having sex when you don't really want to. If you do that a lot, eventually it could take away your desire for sex and leave you feeling angry about it.
- Question from Lucie: Is it dangerous to have sex during chemotherapy?
- Answers - Leslie R. Schover, Ph.D. Normally, unless you're having very high doses of chemotherapy so that your counts become really low, it is not dangerous to have sex during chemotherapy. But always ask your oncologist about your individual situation.
- Question from Concerned: I have genital herpes and have been having some vaginal ulceration I think from the chemotherapy. It is really painful. Do I need to take stronger doses of antivirals?
- Answers - Kara Nakisbendi You should speak with either your oncologist or gynecologist. If you're not already on suppression, then that would be one option. Sometimes if you're having breakthroughs on suppression, gentle genital hygiene is really very important - avoiding strong soaps (really not using much soap at all), and rinsing with water, avoiding any rubbing or increased friction. Gently using your hand with water is usually all you need to do in the shower.
- Leslie R. Schover, Ph.D. Some chemotherapy drugs can cause mucositis in the vagina just like in the mouth or throat, because the lining of the vagina is also like a mucus membrane. So you might think about whether the timing of the pain is also accompanied by pain in the mouth or throat area.
- Kara Nakisbendi For comfort in either of those cases, you can locally apply lidocaine, a pain reliever you can buy over the counter and apply as needed.
- Question from Jessie: Do some anti-nausea drugs reduce libido? What can be done?
- Answers - Leslie R. Schover, Ph.D. The drug Compazine (chemical name: prochlorperazine) is the main one that can reduce desire. It increases the hormone prolactin and also can be tranquilizing. The newer anti-nausea drugs may not have many sexual side effects.
- Question from Cris: Is it true as you're approaching menopause that you have to "use it or lose it"? I keep reading that if you aren't having orgasms regularly then you're going to dry up. Is that really true?
- Answers - Kara Nakisbendi While having orgasms helps with, obviously, pleasure and a release of endorphins and hormones even, it may be more about the vaginal tissue maintaining the elasticity. But it's not absolute, it really depends, I find, on the individual. Certainly, having sex for that reason and not for pleasure is not going to help, and it could make it worse. But if there's no avoidance or a discussion about not having sex due to side effects, it doesn't mean you'll have problems.
- Question from Peaches: Is a woman's testosterone level tied to her ability to be aroused? If so, how does one find out what one's levels are and what is normal?
- Answers - Leslie R. Schover, Ph.D. Despite all the hype in the news, studies of women at menopause show no relationship between testosterone levels and desire for sex. When women lose desire, the major predicting factors are having pain with sex (because if sex hurts you aren't going to be in the mood for it), having stress in your relationship, and having a lot of stress in your life in general. Even when women have both ovaries removed, although some women report losing desire, about half of women still say that their desire is normal. So hormones aren't always such an easy answer.
- Kara Nakisbendi I don't think there is any one quick fix for low desire. I think it's difficult to really tease out for each individual woman all the factors contributing to her low desire. For that, you find there are many factors as opposed to just one. The question of testosterone is complicated, because we don't know enough what is normal and what range is considered low. That's something they need to figure out. What's interesting about menopausal women who still have their ovaries is that as their estrogen drops, their amount of available testosterone can be more available. So some menopausal women may experience an increase in desire. For the vaginal tissue we can sometimes replace estrogen, but we don't see an improvement in the atrophy until we add testosterone sometimes.
- Leslie R. Schover, Ph.D. There is a lot of evidence that high testosterone levels can increase a woman's risk of breast cancer, and that includes both a woman's natural levels of the hormones and increasing levels by giving her replacement testosterone.
- Question from Smith: I'm single and worried about how future partners will deal with my reconstructed breasts. What's a good way to explain the scars, lack of feeling, etc?
- Answers - Leslie R. Schover, Ph.D. I think that when you are close enough to a partner to be considering having sex together that it is important to discuss your history of breast cancer, or if you had the mastectomy as a preventive measure, perhaps your high risk. I think you need to be honest about why you have scars, and also tell your partner that breast caressing may not bring the same pleasure as it used to for you.
- Question from Medena: Are there antidepressants that I can take that won't lower my libido?
Leslie R. Schover, Ph.D.
Every time the pharmaceutical companies come out with a new antidepressant, they claim that it is the one without sexual side effects. After a couple of years, we usually see that it does have some side effects. However, there are some antidepressants that affect fewer women than others. One is bupropion, which is the same as Wellbutrin. Others are newer drugs that change both serotonin and norepinephrine. One of these is Cymbalta (chemical name: duloxetine), and another is Effexor (chemical name: venlaxafine).
Editor's Note: Wellbutrin and Cymbalta are known to reduce the effectiveness of tamoxifen. If you are taking tamoxifen and are considering an antidepressant, talk to your doctor about which antidepressants are safe for you to take. For more information, please visit the Breastcancer.org Tamoxifen page.
- Question from Missy: What about oral sex? Is it safe for me and my husband during chemotherapy?
- Answers - Leslie R. Schover, Ph.D. Some chemotherapy drugs can get into the vaginal lubrication, so you may want to avoid oral sex for a few days after chemotherapy or have your husband use a dental dam - a square of latex that prevents his mouth from touching your vaginal fluid.
- Question from Me: Weight gain from chemotherapy and tamoxifen has really got me down. I exercise a lot, but the weight doesn't seem to want to come off. With this plus surgery scars, I'm feeling pretty unattractive. How can I get back my self-confidence?
- Answers - Leslie R. Schover, Ph.D. It's important to keep exercising even if alone it doesn't result in weight loss, because it's such a healthy thing to do for your body. You may want to talk to a nutritionist about how to have a healthier, low-fat diet. But also, try to be kind to your body and appreciate your body for what it is.
- Question from Sher: I've had a lot of difficulties with extreme dryness, orgasm, urinary tract irritations/infections after sex. What kind of specialist might I see, in conjunction with my oncologist?
- Answers - Kara Nakisbendi A gynecologist or urologist who's familiar with women's healthcare would hopefully be helpful. All of that is connected, and there are some preventative things that can be done: sometimes medications that can suppress urinary tract infections, and possibly vaginal estrogen, can help break that cycle.
- Question from Frustrated: In all the pamphlets they give you to prepare for a future with breast cancer, all the doctor appointments, all the survivor stories, I can't remember this subject ever coming up. Of course survival is the ultimate goal, but I think all aspects should be addressed! Why do you think this subject is bypassed?
- Answers - Leslie R. Schover, Ph.D. I think that doctors in the oncology clinics and even the nurses and social workers are often so pressured to see as many patients as possible that it's hard for them to take the time to discuss things that aren't the highest medical priority.
Do you recommend any books on this issue? We can't afford a therapist currently, or other therapies (e.g. massage, acupuncture) that could help me personally.
- Answers - Leslie R. Schover, Ph.D. Well, that's difficult. The American Cancer Society publishes the booklet Sexuality and Cancer: For the Woman Who Has Cancer and Her Partner. It's available printed or even online - you can download it at the American Cancer Society website. Beyond that, there are no books that I would recommend specifically about breast cancer and sexuality right now on the market, except Living Beyond Breast Cancer by Dr. Weiss, which has a good chapter.
- Kara Nakisbendi Here are a few other resources, not just about cancer. For pain with intercourse, a good site is Vaginismus.com, and while it doesn't necessarily address the vaginal estrogen issue, it does address the muscles that become involved when pain occurs. And two other books: Becoming Orgasmic by Heiman & LoPiccolo. That's a good reference as far as women in general becoming comfortable with their bodies and issues that may have preceded breast cancer and may come into play anyhow. And a good one for couples is called For Each Other by Barbach. Men actually need a lot of education around sexuality. There are a lot of myths that exist.
- Leslie R. Schover, Ph.D. I also have a grant right now from the National Cancer Institute to create a multimedia website for women about sexuality and fertility after cancer. It won't be finished for a couple of years. Of course breastcancer.org is a resource for this transcript and others.