Ask-the-Expert Online Conference
The Ask-the-Expert Online Conference called Intimacy, Sex and Your Love Life featured Leslie R. Schover, Ph.D., Debra Thaler-DeMers, R.N., O.C.N., P.H.N., and Marisa Weiss, M.D. answering your questions about how to improve your sex life during and after breast cancer treatment.
Editor's Note: This conference took place in February 2002.
Questions from this conference
- Will there always be a lack of desire?
- Antidepressant that doesn't affect desire?
- Is couples counseling recommended?
- How long to try anti-depressants before switching?
- Celexa recommended for hot flashes?
- When to talk about experience in new relationship?
- When will breast feel "normal" after lumpectomy?
- Advice on menopause, vaginal dryness?
- How does Arimidex affect sexuality?
- Question from SashaT: I have no desire to be sexual with my partner since my cancer surgery. Is this normal? Will this always be the case, or am I losing my mind?
- Answers - Leslie R. Schover, Ph.D. It is very common for women to notice a loss of desire for sex after their breast cancer treatment. The treatment that most commonly affects sexual desire is actually chemotherapy, but any woman who is going through breast cancer treatment may notice changes like that. Sometimes it is helpful to think about medications that you're taking. Many women take anti-depressant medicine or anti-anxiety medicine or medicine for nausea or pain, and all of those medications can temporarily decrease desire for sex. Of course, there are also the issues of body image and feeling less attractive after surgery. Many women have distracting thoughts about their breast cancer when they're trying to make love.
- Debra Thaler-DeMers If the surgery has been recent, there are also issues of physical discomfort as well as psychological and emotional discomfort with the surgery site. It's important to talk to your partner about what you're feeling and keep the lines of communication open.
- Marisa Weiss, M.D. Sometimes it's helpful to do a quick personal survey, from head to toe, to get a sense of what specifically may be taking away your desire. For example, do you no longer feel sexy? Do you have new vaginal dryness that makes sex uncomfortable? Do you feel rejected by your partner? Or is your biggest fantasy a good night's sleep? If you can identify the things that are most bothersome, it becomes a little bit easier to start on creating a solution. I think one of the things that becomes so difficult is having to work to have sex. Maybe not that long ago it was much easier to have fun that way. Now the extra effort might just be more than you can handle, and as Debra and Leslie will echo this evening, your mind is probably your most powerful sex organ, and keeping the communication going can make an enormous difference.
- Leslie R. Schover, Ph.D. As you can see, you're certainly not crazy.
- Question from LaLa: Is there an antidepressant that doesn't cause a decrease of sexual desire?
Leslie R. Schover, Ph.D.
There are several newer antidepressants that do not have as many sexual side effects. They include Effexor (generic name: venlafaxine). I believe that Celexa (generic name: citalopram) is another one. And a different type of antidepressant, Wellbutrin (generic name: bupropion), is also one that has very few sexual side effects.
Editor's Note: Wellbutrin is known to reduce the effectiveness of tamoxifen. If you are taking tamoxifen, talk to your doctor about alternative antidepressants. For more information, please visit the Breastcancer.org Tamoxifen page.
Marisa Weiss, M.D.
Effexor is also useful at helping decrease hot flashes. So if hot flashes are making you too hot for sex, then this might handle both issues, loss of libido and hot flashes.
Everyone is unique. Sometimes it will take trial and error, trying one antidepressant for a while and maybe having to switch over to another, in order to find the one that works for you and agrees with you.
- Leslie R. Schover, Ph.D. I would also add that besides reducing desire for sex, many of the antidepressants can make it difficult to reach an orgasm so that it takes a long time and a lot of stimulation.
- Question from Selena: Would you recommend counseling for my husband and myself on issues we have about sex since I had my cancer surgery? I've tried everything I know of to be more sexual and make up for the loss of my breast, but nothing seems to work. I'm at my wits' end.
- Answers - Leslie R. Schover, Ph.D. Certainly I would recommend counseling. Sometimes it may be difficult to find a mental health professional who is familiar both with cancer and with sex therapy, but in a large city, there are usually at least a few such people. You may want to ask your oncologist or, if you belong to a support group, women from your group to find out who is available in your area who has some expertise. Sometimes having an outsider's point of view can help pinpoint problems that are getting in the way.
- Debra Thaler-DeMers Some studies have been done that show after a diagnosis of cancer people try to go back to the way they had sex before the diagnosis, and if it doesn't work as well, they tend to give up. It's very important that you not give up, especially if sex was something important to you before your cancer surgery. It may be that you and your husband need to experiment or play with different ways to have sex now that your lives have changed.
- Marisa Weiss, M.D. It's so normal to feel discouraged when you've experienced so many big changes all at once. It's hard to fix things quickly. It will take a lot of time listening to each other, persistence and patience to make progress in this area. Also, know that the progress can be slow sometimes and speed up other times. As best you can, try to keep up the intimacy in your relationship in other departments outside the bedroom.
- Question from LaLa: In the trial and error of trying anti-depressants, how long is long enough to try one before deciding to switch?
- Answers - Debra Thaler-DeMers The answer to this question depends on the individual, which anti-depressant is being tried, and the reasons the anti-depressant is being used—whether it's strictly for depression, to increase libido, or to deal with hot flashes. Some anti-depressants take 2-3 weeks to build up a blood level that will give you relief of your symptoms. Using your own physician to help you make a decision, I would suggest that you give the medication at least 2-3 weeks and perhaps longer.
- Leslie R. Schover, Ph.D. Two to three weeks are a minimum. Sometimes the sexual side effects may be better after the first month or two of taking the medication.
- Marisa Weiss, M.D. In my experience in helping women manage the loss of libido, we might even try a few things at the same time: for example, an anti-depressant, a lot more lubrication, sexy music, a few candles, and leopard underwear.
- Debra Thaler-DeMers Some cancer survivors find that it is helpful to watch suggestive videos, read erotic literature, either alone or with their partner, or to peruse sex books, such as The Joy of Sex or The Kama Sutra. Videos and books, as well as sex toys, are available from web sites such as www.babeland.com, and www.goodvibes.com in California. These things are usually shipped in plain wrappers so your mailman and neighbors need not know what's coming to your home.
- Marisa Weiss, M.D. Make sure that you write your address very clearly on the order form so that there is almost no chance of a mis-delivery.
- Leslie R. Schover, Ph.D. The main thing is to have something erotic in your mind during love-making, whether it's a good memory, a fantasy or something you just saw in a movie.
- Question from J.C.: What do you think about taking Celexa for hot flashes?
- Answers - Marisa Weiss, M.D. For the answer to that question, please join us for our March Ask-the-Expert Online Conference that will feature Dr. Charles Loprinzi addressing the management of menopausal symptoms, including hot flashes. Dr. Loprinzi is in the process of testing Celexa for its ability to cool you down.
- Question from Roberta: I'm back in the dating scene, but I still can't seem to get close and intimate with some of the men in my life now that I've had my surgery. How do I broach this subject before we get in a sexual situation?
- Answers - Debra Thaler-DeMers When dating, there is no perfect time to reveal your cancer history. It's important to have developed the relationship enough so that you would feel comfortable talking about your cancer experience with this person. Keep in mind that everyone reacts differently to knowing of your cancer history. If a man runs for the nearest exit, he probably was not someone you would want to have a long-term relationship with. Also remember that men in general may have a difficult time talking about feelings. I live in Silicon Valley where the typical man has a difficult time knowing what a feeling is. You may have to help him to identify in words the feelings that he is having.
- Leslie R. Schover, Ph.D. In dating, one of the most important things is to feel good about yourself. Before you go out and put yourself back in the dating scene, it's important that you have a clear feeling of self worth and that you can even see how your survivorship experience makes you a more worthwhile person. The better you feel about yourself, the easier it will be to share your experience with others.
- Marisa Weiss, M.D. In any relationship the dynamic between two people is very interdependent. In this case, a man will probably take his biggest cue from you. So if you're uncomfortable with sex, he's likely to sense that and also possibly feel uncomfortable. I find that a lot of my patients assume that if they don't feel attractive, then their partner or a potential partner will also find them unattractive. This is a dangerous assumption to make. And in terms of illness and other things that can challenge an individual as well as a relationship, men certainly are not free of health issues themselves. For example, high blood pressure is more common in men than in women, and the medications used for high blood pressure can cause impotence in men.
- Leslie R. Schover, Ph.D. If you as a woman feel reluctant to go out and date because of your breast cancer, think about how you would feel if you met an attractive man and then found out he had had prostate cancer and was having erection problems because of his treatment. How would you want him to tell you about that? Would it make you reject him as a potential mate? Sometimes it can be helpful to think about how you would react if the shoe were on the other foot.
- Marisa Weiss, M.D. Keep in mind that breast cancer and prostate cancer are relatively common problems. You do not have a rare condition. So many other women struggle with these issues. There is the chance to learn from each other on the discussion boards at Breastcancer.org for example, in the relationship section.
- Question from Iffa: How long after a lumpectomy does it take for one's breast to feel more "normal" to one's partner's fingers?
Marisa Weiss, M.D.
Sensation in the breasts is usually altered somewhat at least by surgery. By making an incision in the skin, little nerves are disrupted and the superficial sensation can be lost. Sometimes the sensation improves over time. This can take up to a year. Radiation to the breast can also dull the sensation that you might have on the skin or nipple/areola area. I think that it's likely to improve somewhat, but it may be permanently altered to some degree. After mastectomy, with a much larger incision, and with loss of the nipple and areola, the loss of sensation is more significant. You may instead want the other breast stimulated. Or you may be able to fantasize about breast sensation, bringing back pleasant memories from before.
In addition to loss of sensation to you, your partner may notice that your breast is more swollen or firmer than it was before. The tissue around the incision can feel hard. This hardness definitely improves over time. Sometimes it may take up to 3 years before it really softens nearly completely. For some women, there remains an area of firmness that will persist indefinitely, usually around a lumpectomy site.
- Debra Thaler-DeMers If you've had radiation therapy to the breast, the skin itself may feel different to your partner. Usually after radiation therapy is completed, it is safe to use lotions, such as those containing aloe or vitamin E to help the skin heal and become softer to the touch.
- Marisa Weiss, M.D. One way to reintroduce touching to the breast is to invite your partner to moisturize the breast, particularly after radiation, with a moisturizer like Vaseline Intensive Care or A&D ointment. Once your skin heals, you can move on to a thinner moisturizer preparation. This is something that some women like to do. Other women may choose not to be touched temporarily or for an extended period of time. Try to do things your way.
- Question from Scarlett: I am 39 years old and have completed five chemo treatments (I'll have 24 total). What can I expect from menopause? I'm concerned, as I always had a healthy sex life. I've noticed vaginal dryness lately. Is this a temporary condition while on chemo or is this something I will need to learn to live with?
Leslie R. Schover, Ph.D.
The likelihood is at 39 that the menopause may be permanent, although some women may still recover menstrual cycles. The vaginal dryness is one of the main symptoms that you may notice along with hot flashes. Not every woman has a change in desire because of menopause, but some women do feel that their desire for sex is reduced. One of the most important keys to staying sexually active is to use a good lubricant so that intercourse does not become painful and uncomfortable. There are many lubricants available either at drugstores or over the Internet. Some of the ones that women like include Astroglide, K-Y Liquid or K-Y Silk-E or a lubricant called SYLK that comes from New Zealand and contains extraction of kiwi fruit vine.
Women who have severe dryness may also want to try a vaginal moisturizer like Replens. These products are different from a water-based lubricant. They are gels that come in a tampon-type applicator and must be used three times a week, usually before bedtime. They help keep the vaginal lining moist all the time and only get their full effect after you use them for around 6-8 weeks. Unfortunately, they can be expensive and are not covered by insurance because they are over-the-counter products.
- Marisa Weiss, M.D. Gynecologists often have a good supply of Replens samples. Make sure you ask for a bunch to help you get started.
- Leslie R. Schover, Ph.D. When you are using a lubricant, it is important to make sure if you are having intercourse that both the entrance to the vagina and the head of your partner's penis are well-lubricated, so that penetration goes smoothly and does not set up a cycle of tightness and pain.
- Debra Thaler-DeMers Using lubrication before intercourse can be part of your foreplay, where you would lubricate your partner and he would lubricate you.
- Leslie R. Schover, Ph.D. It is helpful to keep your lubricant right by the bed or wherever you are making love and not to hide it in the bathroom so that you have to get up to put more on.
- Question from Becca: How does Arimidex affect sexuality?
- Answers - Marisa Weiss, M.D. Arimidex is an aromatase inhibitor, which reduces the amount of estrogen produced in your body after menopause. It is used in women after menopause who have hormone-receptor-positive breast cancer. There is a huge study going on right now that is looking at how Arimidex treats breast cancer and also how Arimidex affects quality of life. These important data will be available in about a year. Right now we don't have a good answer to your excellent question. If your doctor prescribed Arimidex for you and if you take it, keep tabs on how it's affecting you from all points of view.
- Question from Becca: I know I'm supposed to look at myself in the mirror and accept the way I look with a huge scar across my chest, but I've tried that again and again and I just can't stand looking at it. I'm worried that my low body image will ruin my self-confidence and any chances I might have of finding a steady partner.
- Answers - Leslie R. Schover, Ph.D. It has become politically correct to advise women to learn to love their scars, but there is no right or wrong when it comes to feeling attractive. If you feel more comfortable making love wearing a lacy camisole and your breast prosthesis, that is fine as long as you and a partner are in harmony. If you feel that your loss of a breast is keeping you from trying to meet someone new, perhaps you may want to consider whether breast reconstruction is an option for you.
- Debra Thaler-DeMers I think intimacy involves more than your body image. It involves how you feel about yourself, in total, and how you feel about a potential partner. Intimacy begins in the mind.
- Marisa Weiss, M.D. A very wonderful sex therapist, Dr. Wendy Schain, has a very thoughtful daughter who said that "intimacy" means "into me you will see." If you are able to create and sustain a closeness with somebody, then you already accomplished something very magical that is probably more special and difficult to find than the sexual part that you may want to have follow.
- Debra Thaler-DeMers You should take things one step at a time.
- Question from Sally: Do you find more women are having full breast reconstruction surgeries because of the sexuality issues with their men?
- Answers - Leslie R. Schover, Ph.D. I think that research on women's motivation to have breast reconstruction shows that the biggest issue is feeling whole again and being able to wear a wide variety of clothing. The sexual issues are usually further down the list in women's reasons for getting reconstruction.
- Marisa Weiss, M.D. Another challenge in the bedroom may be managing hair loss during sex. I have patients who use a wig with a good grip to bed with them and I know other women who feel perfectly comfortable going to bed bald. Hair loss for many women can be even more traumatic than the loss of a breast. If this is a problem in your life, try various solutions that will hang on for the ride during the encounter.
- Leslie R. Schover, Ph.D. It is not only the loss of hair on your head but also your pubic hair that may make you feel shy about being close to your partner.
- Marisa Weiss, M.D. Pubic hair can function like a cushion and some women without pubic hair during chemotherapy, for example, find that sex may be more uncomfortable because of that. Pubic hair wigs are available. You can ask a shop that specializes in solving hair loss problems for women as well as men.
- Question from Andrea Lyle: My husband saw me in pain for a long time, and I think he's worried that he might hurt me as we return to our old sex life. How can I identify and offset his concerns?
- Answers - Marisa Weiss, M.D. It's good that you're communicating and that he feels free to express his concerns with you. That's a great place to start!
- Debra Thaler-DeMers It would help your husband if you and he could agree that if he does hurt you, you will either tell him or give him some kind of signal that lets him know. This would help him worry less about causing you pain during sex. Many times the people we love imagine that we are in more pain than we actually are. It's very helpful to agree that you will let your partner know when you're in pain.
- Leslie R. Schover, Ph.D. It can also be difficult to switch from caretaker to lover if your husband was helping you during your period of more acute illness. It may be important to get some romance back into your relationship so that you can feel like lovers again.
- Marisa Weiss, M.D. In addition to letting your partner know when something might be uncomfortable, it's just as important to let your partner know when something feels good. Positive reinforcement will always work well.
- Question from Rocky: My husband wants sex; he reaches for me all the time, but I pull away. Will it get better?
- Answers - Leslie R. Schover, Ph.D. You may have to work on your reactions. If your first impulse is to pull away, take a moment to identify what thoughts and feelings you're having. You may be having some negative thoughts about your breast cancer that are interfering with your usual wish to be close.
- Debra Thaler-DeMers If you and your husband had frequent intercourse before your illness, he may see your reluctance now as a rejection of him. If you can identify why you hesitate to be intimate, it will be easier for you to share your feelings with your husband. As was said earlier, it's important to keep the lines of communication open between you.
- Marisa Weiss, M.D. It may be worth trying other types of sex besides intercourse. Oral sex, manual sex, plus other ideas that you may have in mind. This may take some pressure off you, and these encounters may be enjoyable to you, knowing that it's unlikely that you will feel physically uncomfortable during them. If you are giving pleasure to your husband and if you find it's a turn-on for you, then you could switch gears and then reconsider the possibility of intercourse.
- Question from Blue Pal: Does Viagra work for women?
- Answers - Leslie R. Schover, Ph.D. Unfortunately, the studies of Viagra in women have been disappointing. There are news reports that the same drug company that makes Viagra is working on a new drug nicknamed "Pink Viagra" for women. Apparently this drug is quite similar to Viagra. I have not yet seen any clinical trials of this drug. A drug like Viagra might possibly help women produce more lubrication if they are menopausal and it is not safe or comfortable for them to use estrogen. This type of drug does not affect desire for sex and only works in the local area of the genitals to increase blood flow.
- Question from Mary: I have just started taking tamoxifen. What are the chances of getting pregnant on tamoxifen? With being premenopausal I find that this is always in the back of my mind and know that it wouldn't be good to get pregnant at this stage of my life, being 49.
- Answers - Leslie R. Schover, Ph.D. Whenever a woman takes tamoxifen and is still in the years when she might be fertile, she is advised to use birth control, since tamoxifen could potentially harm a fetus. It sounds unlikely that you might get pregnant at age 49, but remember that in Europe tamoxifen is used as a fertility drug like we use Clomid here. In a woman who is not yet in menopause, tamoxifen raises estrogen levels and can cause ovulation.
- Marisa Weiss, M.D. When tamoxifen is used to help with infertility, it's used with a different dosage and in a different manner than it is for women with breast cancer (at 20 mg. per day).
- Debra Thaler-DeMers Any woman who is in the fertile time of her life who is currently on chemotherapy should use some form of birth control. Many chemotherapy drugs can cause birth defects when used early in pregnancy.
Marisa Weiss, M.D.
If you were premenopausal and your chemotherapy stopped your periods, you may still be able to get pregnant. For many women, the loss of periods may be temporary, and you can't predict exactly when your periods may resume, if they do so at all. With the changes in your vagina, you may find condoms uncomfortable. The latex may cause some irritation. This may force you to identify other sources of effective birth control.
Although a diaphragm may not be the most appealing form, it is effective if used properly. It is used along with a spermicide which can help lubricate the area. If the spermicide irritates your vagina, you can rinse the vagina out with water five hours after intercourse, when you remove the diaphragm as well. This will limit the amount of time that your vagina is in contact with the spermicide. Birth control pills are generally not known to be safe in women who've had breast cancer. Therefore, most doctors will not prescribe this form of birth control if you've had breast cancer.
- Debra Thaler-DeMers There's an IUD on the market now that's considered to be safe as well.
- Question from Fiddle de dee: Once my husband and I got over the hump of feeling fearful and awkward about resuming sex after my breast canceer, the result was great. We have hot, intimate times together without worry, and where the focus is just on feeling wonderful together. Does sex help us feel better, or is it just me?
- Answers - Debra Thaler-DeMers Sexual activity, especially good or wonderful sexual activity, releases endorphins, which are the body's natural morphine. So it is absolutely normal to feel better during and immediately after sex. In addition, the intimacy shared during sexual activity will also help you to feel better.
- Marisa Weiss, M.D. It sounds like you have a very nice relationship with your husband, and it's certainly true that the best sex can occur within the context of a good relationship. I have some patients who have become more interested in sex after their breast cancer diagnosis. The way they explained it to me was to say that having sex made them feel more alive and in the moment at a time when they were feeling lifeless and isolated. Every woman has a unique response to all these new challenges in her life. You may be able to learn a lot from each other in support groups and in other forums where experiences can be shared in a private and safe and respectful setting.
- Leslie R. Schover, Ph.D. For single women, don't despair, because a large survey of breast cancer survivors also found that women who developed a new relationship after their breast cancer were the most sexually satisfied group compared to all the other women in the survey.
- Question from J.C.: How would you explain to someone on a date that you are in a good position to be cancer free?
- Answers - Marisa Weiss, M.D. When you share the information about your breast cancer history, you can also add in that your doctors have reassured you that you have an excellent prognosis and every reason to be confident in your treatment, and that they've encouraged you to go on with your life and plan for the future. Also, time really helps in this department. The longer you are out from your diagnosis, the more reassured everyone is.