Cancer affects every part of patients' lives, including their intimate lives. Sharon Bober, PhD, joined Dana-Farber for a live chat to discuss sexual health during cancer treatment, as well as tips for maintaining intimacy during and after cancer. Bober is director of the Sexual Health Program at Dana-Farber.
A transcript of the chat follows:
Physical and Emotional Changes
What are some of the physical and emotional changes related to sexual health that cancer patients might experience?
Cancer and its treatment can cause a lot of changes for patients. Chemotherapy, surgery, and hormonal therapies can put women into early menopause and cause erectile dysfunction in men, and radiation to the pelvic area may cause pain or discomfort during sex. Some cancer patients also lose body parts during surgery – breasts during mastectomies or sometimes limbs to treat sarcoma. The scars these surgeries leave are more than just skin deep, and may cause body image concerns, insecurities, and self-doubt for many patients.
Cancer treatment can also be incredibly tiring and stressful. Even if patients don't have physical scars or physical changes that affect their sexual ability, they may not feel up to sexual activity in the same ways as before treatment.
Cancers That Lead to Changes
Are there certain cancers where patients are more likely to experience these sexual changes?
A lot of attention gets paid to cancers that occur in the genital area, including ovarian, cervical, testicular, or prostate. But lots of people have disruption in sexual function from other cancers as well. For example, people with head and neck cancer may struggle with changes in body image and the fact that sexual activity and kissing is challenging when you can't make saliva. Patients with bladder or colorectal cancer may receive pelvic radiation, which doesn't just impact sex organs, but also may result in ostomies, which has a real impact on intimacy. Also stem cell transplants cause hormonal changes and have a profound impact.
While treatments have advanced greatly and are often able to cure patients or stop cancer from growing, treatments commonly have an impact on sexual function and body image, whether they are directly related to the genitals or not. Common side effects of treatment like fatigue and loss of energy have enormous impact on both feeling sexy and being in the mood.
Stress
Cancer causes a lot of stress in every area of life. Is it really important to address sexual health changes when so much else is going on?
Yes! Regardless of whether you are partnered or engaged in regular sexual activity, changes in sexual health and identity are common and can be very distressing. When sexual health is intact, this can be a very life-affirming aspect of human experience. Intimacy can even help promote recovery and ease anxiety, so from a quality-of-life perspective maintaining intimacy is very important, even if it may not include some sort of physical activity.
Furthermore, it's important to broaden our definition of what it means to feel sexy and be sexually active, over and beyond the capacity to have intercourse comfortably.
Hormonal Medications and Erectile Dysfunction
Some men who are on hormonal medications – for prostate cancer, for example – may experience erectile dysfunction. How can they stay intimate with their partners?
For guys who have significant erectile dysfunction from treatment, it's important to know that just because this is happening now doesn't mean you won't regain function.
But waiting to feel like "yourself" again isn't a solution by itself; it's important to recognize that you can still be intimate and sexually active, but you may need to do some rehab. There are various sexual aids that can be helpful, including pills, vacuum erection pumps, and injections. It is very important to speak with your care team, who can help you address changes in erectile function and get the help you need to regain function.
It is important to note that men can also have pleasurable sexual activity, including being able to have orgasm, without full erectile function.
Your biggest sex organ is your brain, not your genitals. Recognizing that you can have the experience of arousal and even climax without having an erection is something many men don't know. An orgasm is happening as much in your brain as in your genitals. Allowing yourself to explore the mental side of pleasure and desire can help improve your intimate life, and if you struggle with this, professionals may be able to help you deepen the mind-body connection.
It's often very pleasurable for men to pleasure their partner, and that's something you can do whether you can have an erection or not. Being able to pleasure your partner can still be a turn on – for both men and women. There are many more ways to be sexually active than we see in the movies and on the TV screen. Being able to be creative and have communication that allows you to explore non-penetrative sex is incredibly important. Sex doesn't have to just be intercourse.
Lubricants
Many women who have had their ovaries removed experience dryness and cannot use estrogen-based products. Is it safe to use coconut oil as lubricant?
Coconut oil is certainly safe to use as a lubricant; however, it sounds like you may benefit from using a vaginal moisturizer on a regular basis. Compared to lubricants, moisturizers provide long-term relief from itchiness and irritation and help restore healthier vaginal lining. These are non-hormonal and will help renew the health of the vaginal tissue. Use at bedtime for best absorption.
It's also important to avoid using anything in or around the vaginal area that could be irritating, including lotions, perfumes, harsh soaps, deodorants, or douches. Also, when using a moisturizer, it's really key to moisturize the vulva.
Regaining Your Sexual Identity
Many younger women may go into early menopause due to treatment, which can be physically and emotionally challenging. How can they regain their sexual identities?
Similar to men, who may not feel like sexual beings if they have sexual dysfunction, early menopause can cause feelings of loss and sadness for women, particularly if they haven't yet had children and have lost their fertility. Physically, women may find intercourse to be painful or uncomfortable, and might even feel removed from their bodies after surgery. Vaginal moisturizers and pelvic floor exercises can help with physical problems, and self-touch can be important for reconnecting with your body.
It's important for both men and women to figure out what's comfortable and pleasurable for them, and to be able to talk about self-touch with their partner without feeling embarrassed. Men might use a vibrator on their female partner to explore what feels good, and women can do this on their own, too. Even if you aren't in a relationship, feeling comfortable in your own body is relevant for everybody.
Alterations to Your Body
Some women who have had mastectomies, particularly if their nipples were not spared, feel less aroused and more disassociated from their breasts. Are these problems common? What are some solutions you can suggest?
If you've had alterations to your body, like mastectomy or any kind of surgery or scar that results in numbness or change in sensation, you might need to focus on remapping parts of your body that are "in play" during sexual activity and discover other zones of pleasure to focus on. For example, if you aren't comfortable with someone touching your breasts, or there is a loss of sensation, and that was a big part of your experience before, it's important not to feel defeated or discouraged. Acknowledge the loss – because it truly is a loss – and refocus on other parts of the body that still have a lot of sensation. Taking time to get comfortable and explore your body without feeling panicky is a very important part of the process. Negotiate with your partner about what feels OK and what doesn't, which may mean a new idea of foreplay.
This experience is VERY common, and no one talks about it. Another great strategy is to do some mindfulness-based activity that will help you start to tune back in to your experience in a way that feels safe and comfortable and allows you to move away from that dissociative experience that can become a habit.
Pain After Intercourse
Some patients may experience pain during intercourse after treatment. Are there ways to help lessen pain and make sex more comfortable and enjoyable?
Pain can occur from dryness related to menopause or hormonal therapies, or from pelvic radiation, and it's the quickest way to lower desire. Physical therapy for the pelvic floor can help make intercourse more comfortable, as can lubricants and dilators. Vaginal moisturizers, which are different from and longer lasting than lubricants, can also help alleviate dryness in the vaginal and vulva, and should be a regular part of self-care for any woman going through menopause.
Ibrutinib
What should patients be aware of while taking Ibrutinib and contemplating sexual intimacy?
Not much is known about sexual side effects of Ibrutinib, but it is recommended that you use a condom if you will be having sexual activity with someone who could get pregnant, because this medicine can significantly harm a developing fetus. As far as possible side effects, a general feeling of reduced energy and fatigue is common. It's important to pay attention to when you feel like you have more energy and make an effort to adjust your intimate life accordingly. For example, you may decide that intimacy in the morning makes more sense than at 10 p.m., or that you and your partner have to talk more openly about expanding your routine depending on how you are feeling. It is really crucial for you to let your partner know that you want to keep communication open about this and that you are willing to be flexible depending on how you feel.
Gleevec
Should patients on the oral chemotherapy Gleevec use protection when having intercourse? Is it harmful to pass bodily fluids while on the medication?
We generally assume that the safest approach is to use a condom. Unfortunately, we have very little data about this, and couples need to make their own decisions. In general, if you are undergoing chemotherapy for cancer treatment, the recommendation is that you wear a condom for at least two days after treatment during any type of intercourse (vaginal, anal, or oral). This is to prevent your partner from being exposed to any chemotherapy toxins that may be present in your semen. This would mean that for someone taking a daily chemo drug, it would be safest to use a condom on a regular basis. This is also a very reasonable question to take back to your medical team.
Conversations With Partners
It can be challenging to bring up sexual health issues with partners, even if you've been together many years. Do you have tips for managing these conversations?
The subject is usually on both partners' minds, and can cause a lot of stress, worry, and guilt during an already incredible stressful time. It's important to discuss your concerns openly and honestly – and not at 11 p.m. at the end of a busy day.
Being able to acknowledge that things are different and that you want to talk about it can be a huge relief to the other person. These conversations work best when they take place in a neutral, nonthreatening space, like on a walk, not in the bedroom right before you go to sleep. I recommend scheduling a time to talk about it, rather than springing it on your partner, as that can often make people feel attacked or caught off guard. It can also be helpful to use "I" language, such as "I feel self-conscious about my body after my surgery and worry what you might be thinking. Would it be ok to take some time to talk about it?"
And for some couples, it might be helpful to meet with a therapist to help facilitate these conversations.
How Partners Can Help
Is there anything partners can do to help patients feel more comfortable with their bodies and sexual activity?
Being patient, listening, and sharing your worries goes a long way. Sometimes partners have no idea what to do, so it's important for them to bring it up if they're unsure. Make it clear that you aren't trying to pressure your partner, but that it's something you're thinking about and wondering if the patient might be wondering about it, too.
It's often helpful, for both parties, to think of your sex life after cancer as a new or different chapter in your intimate life together, rather than a continuation of the life you had before the diagnosis. It's helpful to think about dating and what you did when you started to date – putting a toe in the water and building a repertoire of what feels nice before jumping right in. Having this perspective gives couples permission to go slowly and try things out with a sense of humor, recognizing it might work or it might not work. This helps take some of the pressure off both partners, and can help avoid a lot of frustration.
Scars
For some partners, patients' scars, from a mastectomy, for example, can cause less arousal. Are there exercises, visualizations, or other tools to overcome this?
It sounds like you and your wife may really have to work together to create a new chapter in your intimate life together. When this kind of negative dynamic happens, it becomes crucial to hit the reset button and figure out how you and she can experience a brand new sense of closeness and mutual desire. In the same way that her experience of you as a man and a lover is not just about your capacity to have an erection, I would suggest that your experience of your wife as being sexy or as being beautiful is not defined by any one body part. However, when we get caught up in a loop that we keep repeating over and over, it can be hard to remember that we are able to take a much broader view on renewing sexuality and intimacy.
I would encourage you and your wife to figure out how you can start with small steps, and find ways of enjoying mutually fun and satisfying experience that can build trust and improve the feeling of closeness. A couples counselor may also be beneficial in helping you communicate better and uncover more about what is happening. I would also suggest that it might be helpful to not focus on your experience of her scars, but rather step back and focus on your wife as a whole person who, like you, is able to both give and receive pleasure. That is a very different starting point. Finally, I would note that often there are other issues in the relationship that can be underneath the feeling of just not being attracted to each other, and couples counseling can help uncover and address those issues.
Tips for Single Patients
What about patients who are single? Do you have tips for dating and being intimate with new partners?
Having cancer when you're single is tough in so many ways, especially if you're young and your friends and peers are getting married and having kids. It can be difficult to talk about your cancer with partners or potential partners, and you may feel self-conscious about changes in your body; if you don't feel comfortable in your own body, how do you express that to a new partner?
Focusing on yourself first and figuring out what feels good, through self-touch or using vibrators or other tools, can be helpful. But it's important to remember that your experience of sexuality and intimacy is not defined by any one body part or a specific capacity for activity. It's much bigger: it's all of you.
The capacity for giving and receiving pleasure can be a wonderful gift for both partners, and that is not just about having intercourse. Some patients will say that can't imagine dating because they feel so damaged, and that's usually premised on an assumption that things will never get better; but there's a lot we can do to make things better. There's often a wide range of expectations about what an intimate relationship may look like, and it's really important not to assume that your own assumptions are what everybody else is thinking. We might assume someone wouldn't want to date someone who has a scar or a less traditional type of beauty, but that might not be true. It's important for everyone to question the assumptions we have of what dating looks like.
If you meet someone you would like to start a sexual relationship with, it's important to take your time, and make sure you're comfortable with your body and open about any worries. The best sex happens when partners trust each other and are able to communicate their needs, which often directly contradicts the casual dating and "hookup" culture common among many young adults today. You might feel left behind by peers, but it's important not to rush anything you aren't comfortable with. Take pressure off yourself to do everything all at once when it comes to sex, and think beyond intercourse to pleasure more generally. Communication and honesty are important going into any relationship, and if being a cancer patient or survivor is a turnoff for someone, then maybe you wouldn't want to date them anyway. Put one toe in the water at a time, as far as disclosing your cancer diagnosis and any sexual side effects, and see what you get back; then decide whether that person is someone you actually want to be with.
Lichen Sclerosis
What is impact of lichen sclerosis in the vulva after breast cancer mastectomy/reconstruction and hysterectomy, as far as sexual intercourse?
It is important to make sure you are seeing a gynecologist who specializes in treating lichen sclerosis – this is not an uncommon diagnosis, but it needs to be addressed.
Lichen sclerosis can certainly be managed, and women are able to get back to having regular, comfortable sexual activity. If you need to find a specialist, you can look for either a gynecologist who has this expertise or a dermatologist who also has this focus in their practice.
Help for Patients
What type of help is available for patients who are experiencing sexual health concerns?
A: There's lots of help available. Often, people don't feel super comfortable talking about sexual health with their doctors, and oncologists aren't always the best at bringing it up, either. Finding someone on your care team whom you trust – whether that's your oncologist, nurse, social worker, therapist, or someone else – can be immensely helpful in starting these conversations.
Medications are often available to help with things like erectile dysfunction, and a urologist can also help manage this issue. Physical therapy for the pelvic floor can help women recover from treatment and regain some comfort and sensation. And speaking with a therapist or sexual health expert can help with the mind-body components of intimacy and coping with body image issues.
The bottom line is that if sex is different from the way it was before and it causes distress, then it deserves care. A lot of patients brush off sexual issues because they're so thankful to be alive, but quality of life is incredibly important, and we're here to help you live the best life you possibly can.