by Diana Price updated 6/2020
Dr. Barbera Honnebier is a plastic and reconstructive surgeon in Hawaii. Two years ago, at the age of 42, she was diagnosed with an extremely rare tumor of the airways. When asked about how cancer affected her life, her sexuality, and her intimate relationships, she immediately responds, “My cancer changed everything.” After her diagnosis she broke her engagement, found solace in a brief relationship with a much younger man, then finally met the love of her life.
When first diagnosed with cancer, Barbera says, “I was absolutely floored, but it helped me approach it as any other challenge in my life. When I went through treatment, I gave it 110 percent. With that I tried to be as positive about it as I could possibly be. I saw it, and still see it, as an indicator of how negative energy and emotions can erode your life. So now I really want to live and capture each single day. And with that comes the experience of sexuality and partnership.”
When asked how partners can be supportive after a cancer diagnosis, Barbera responds, “Ideally, they have to be supportive of you emotionally—your fears and your concerns—but also supportive of you physically. If you have a partner, I think it is important that they understand your disease and stand by you during your treatment. I think that is a key factor. This, of course, is not easy. If your partner is intimidated or frightened by your illness or does not know what to do with it, that in and of itself must create a divide. As a woman, you want to sense in your partner that no matter what happens to your body, he or she will still love you and desire you—and not because you have two breasts or whatever other body part you might be at risk for losing but for a host of other reasons. I think women want to hear that. Women want to be desired.”
Barbera’s cancer diagnosis contributed to the breakup of an eight-year relationship. “We had, and still have, a great bond. I never doubted my fiancé’s love for me,” she says. “And it is difficult to summarize what happened and not entirely fair to the great relationship we had as there were many factors involved. But certain needs I had were not met. I felt undesirable. I found it very hard to have to indicate that I really craved physical attention and intimacy. I don’t want to have to beg you to reach out to me. I’d rather have you freely give it to me. Not everybody is equally ‘touchy-feely’ of course, but this was a time when I realized how important that was for me and for my overall happiness.”
It was at this point, just two weeks after her final radiation treatment, that Barbera began a three-month relationship with a young Venezuelan man she met on one of her medical missions. When the relationship began, she remembers thinking, This is obviously what I have been missing. I haven’t felt this alive in years. I need this right now and maybe for the rest of my life. Her prognosis was uncertain at the time, and when she met someone who said, “I don’t care about any of that—I think you are fabulous and sexy and I just want you,” it truly was like a message. It brought out all the sensuality that life has to offer.
Though that particular relationship was not destined to last, it taught Barbera about what she wanted in her life. Now on the other side of treatment, and clear about what she needs, she has found the love she dreamed of her whole life. In describing her current partner, Young, she says, “I am so blessed—truly, truly blessed—to have met somebody at this stage of my life who really gets it, who really gets me and who gets the vulnerable side of me, who gets all the other issues I struggle with. He is the most joyful man I’ve ever been around. And he has his own issues. We just continue to help each other on a daily basis. We help each other grow. . . . Most important, however, he treats me like a woman every day—his woman—and he makes me feel beautiful every day and desired every day. And that’s part of feeling alive, especially after everything I’ve been through. It’s a large part of what I want out of my life now: true partnership and positive energy.”
In her relationship with Young, the topic of her cancer was something Barbera brought up after it became apparent that their relationship was becoming serious. And despite her happiness, she acknowledges that she and Young discuss her fears of not being able to promise a future together and of being a burden if she gets sick again. She feels incredibly lucky that Young’s response has been, “Well one of us has to die first. I love you and I want to be there with you.”
Regarding the challenges of starting new relationships after a cancer diagnosis, Barbera says, “You have desires and wants and needs, and you meet a new man you are attracted to, but you have now been brutally confronted with your mortality. It’s a very different ballgame. The same holds true for other challenges. I am much more fearless now.” What helped was to tell herself: I have nothing to lose, do I? Let’s go for it. I may have never spoken to this guy five years ago; but now, hey, I’ve been through cancer treatment. How much worse can it get? I should go and say hello to the guy. If he blows me off, so be it. Why waste time?
Asked if she has recommendations for women who are currently in a relationship, she says, “If you are in a relationship with a person whom you can actually converse with, make it known that you truly would love to be desired because that may be very nurturing. I really believe that is so helpful—to just feel desired as a woman aside from everything that is going on with your illness and your prognosis. Just forget about it, however briefly. Be intimate and just enjoy each other, body and soul. It can provide such a relief because it is just so joyful. To be with the right partner and to enjoy them sexually and intimately—there is really nothing like it.”
Barbera stresses her belief that positive intimate relationships can play an important role in the healing process. “My tumor is right in the center of my chest. The more I can nourish my heart and feel good about my life—what I do with it and the people around me, love and be loved—the better it’s going to be for my cancer. I believe that one’s immune system is strengthened by love and, importantly, by physical touch. I think there is so much unknown about that element of healing—and I mean touch in a very broad sense—feeling loved by pets, by family members, by partners, by lovers, by whomever. I think that can do nothing but help you. I wish that for everyone. I really do.”
Finally, she notes that women shouldn’t be afraid to ask for support. As she puts it, she discovered through cancer that her life was not about being “a lonely camel crossing the desert without supplies.” She came to realize that she needed supplies, including love, unqualified support, loyalty, and intimacy. She says, “You have to ask for help sometimes. You have to reach out to people sometimes. And it’s okay. I was raised to not ask anybody for anything, but it’s not so bad. I had to get cancer to discover what true love means.”
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The Elephant in The Room
A Woman’s Guide refers to concerns about sexuality and intimacy as “the elephant in the room that no one talks about but that affects almost every woman treated for cancer.” The many physical and emotional changes that follow a cancer diagnosis can affect sex and intimacy. Openly addressing these changes with your partner and your healthcare team will help resolve problems that may arise and will allow you to continue to experience the joy of positive intimate and sexual relationships.
Two of the most common sexual concerns expressed by women after a cancer diagnosis are libido loss and vaginal dryness. According to Dr. Kydd and her coauthor, medical writer Dana Rowett, there are steps women can take to deal with these and other concerns.
“Loss of libido can stem from fatigue,” says Rowett. She notes that women often face a range of demands in their lives even before a cancer diagnosis. When cancer and cancer treatment are added to the challenges of family, home, and work, it’s not surprising that sex sometimes falls to the bottom of the list. One solution, explains Rowett, is to schedule sex for the time of day when you have the most energy. Similarly, if you’re taking a medication that interferes with libido, you may want to schedule sex for when the medication is least potent.
Another important step is to retrain your mind to think sexually. “A woman’s biggest sexual organ is her mind,” says Rowett. “If you can get your mind thinking about it again, the rest will come.”
“Sometimes libido comes back,” says Dr. Kydd, “but I think one needs to encourage it.” Part of that process may involve reevaluating what pleases you sexually. If you’ve had breast surgery and reconstruction, for example, you may no longer have sensitivity in your breasts. It’s also possible that types of sexual contact that you enjoyed before cancer may no longer be pleasurable. “Women can reach orgasm,” says Dr. Kydd, “but they have to find out for themselves what is pleasing—and then they need to teach their partners.
“One of the biggest passion-killers,” she notes, “is painful intercourse. Women need to learn how to ensure that sex is no longer painful.” For many women who have had cancer, a common source of pain during sex is vaginal dryness. Menopause, cancer treatment, or a combination of the two can reduce vaginal moisture. Natural or induced menopause is also linked with reduced fat around the vagina and a thinning of the vaginal walls. Dr. Kydd recalls talking to one woman who said that her vagina “felt like tissue paper.”
Liberal use of vaginal lubricants can help dramatically. You may need to try different products to find the one that works best for you. Warming lubricants, for example, may not feel good if you are already experiencing vaginal burning.
Whatever your concerns about sexuality or intimacy, overcoming them requires open communication with your partner. “Communication is absolutely the key,” says Dr. Kydd.
Rowett agrees, noting, “What happens is kind of a cycle: The woman has changed, whether it’s her body or her mind. She may have withdrawn because she has focused on not dying. Then, after that, her partner is sometimes afraid to approach her about intimacy because he doesn’t want to hurt her. And when he doesn’t approach her, she feels rejected.”
Women need to talk with their partners about their desire for intimacy and for specific types of sexual contact; they must communicate about what feels good and what doesn’t. Both Rowett and Dr. Kydd hope that their book will help with this process. The book includes a chapter for partners, and Rowett hopes that women can hand the book to their partner and say, “Read this.”
If you are single, an additional challenge is when to tell a new partner about your cancer. Bringing up the topic in the heat of passion is not the optimal time. Instead, suggests Dr. Kydd, try broaching the subject “on a walk or in a restaurant, when you’re talking about all of your life.”
Making the effort to maintain or reestablish intimate relationships after cancer can contribute greatly to quality of life. “It’s about feeling close and alive with another human being,” says Rowett. “Aspects of sexual intercourse may change after cancer, but intimacy is still highly valuable.”
Dr. Kydd, who has had cancer herself, explains: “A sexual, intimate relationship is something you don’t share with the rest of the world. It’s something special with one person. If you lose that special relationship, it’s a huge loss.”
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If you enjoyed positive intimate relationships before cancer, you will very likely be able to enjoy them again. You and your partner may need time to adjust to the “new normal” of life after cancer, but open communication about your concerns and desires will speed the transition.
For many women intimate relationships are an important part of feeling alive and whole; don’t let cancer take that away from you.
Coping With an Altered Body Image
An altered body image is common among survivors. Anne Katz, RN, PhD, a sexuality counselor at CancerCare Manitoba in Canada says that the cancer experience can have a profound impact on body image.
“Our body image is very closely associated with how we are seen as sexual beings,” Dr. Katz says, and yet “there’s not a lot of talk about sexuality in the oncology world.” In fact, though most serious illnesses affect sexuality in some way, sexuality counselors are not common in hospitals and cancer care centers.
“Just as we discuss the other side effects of cancer—nausea and hair loss—we need to talk about the sexual side effects,” says Dr. Katz, who has authored several books on the subject, including Sex When You’re Sick: Reclaiming Sexual Health after Illness or Injury and a handbook for healthcare providers called Breaking the Silence on Cancer and Sexuality.
Dr. Katz says that though human sexuality education at the university level was popular in the 1960s and 1970s, it’s not as common now. And healthcare providers today are often reluctant to raise the topic because they’re concerned with appearing voyeuristic or worry about encouraging questions that they won’t be able to answer. And yet, Dr. Katz says, the conversation remains critical, as patients face feelings of isolation and decreased self-esteem.
“Most patients want validation, normalization, to know they are not alone,” says Dr. Katz. To that end she encourages healthcare providers to first give the patient permission to talk about sexuality. This can be as simple as opening the door with a statement like, “You know, people who have been through [your type of illness] often have questions about sexuality. How can I help you in this regard?” As follow-up, Dr. Katz says, providers can refer patients to the appropriate expert for intensive therapy.
Sharon Bober, PhD, director of the Perini Center’s Sexual Health Program at Dana Farber Cancer Institute in Boston, agrees that there is a lot of work that needs to be done to address the disparity between this big issue and the little attention it receives.
Dr. Bober says that cancer can leave deep scars, both literal and figurative. Depending on the illness and the treatment, side effects can range from a lack of libido to painful intercourse to erectile dysfunction to emotional distress over infertility or the loss of a body part. “From an emotional point of view, people feel terribly damaged,” she says.
And when conversations with healthcare providers about sexual side effects don’t occur, the problem is magnified: “Often women assume nothing can be done, especially if no one is talking about it.”
Dr. Bober says that there is a lot that can be done to manage symptoms, but the solutions aren’t always as readily available as they need to be. She often finds herself having conversations with patients about vaginal moisturizers, dilators, or lubricants only to ultimately have to refer them to the Internet to actually buy the products she has described. “In the [hospital’s cancer] boutique, you have 80,000 headscarves, but you can’t get lube,” Dr. Bober says.
But Dr. Bober stresses that sexual health goes beyond physical symptoms: “Sexuality is the interaction of physical health and emotional well-being.”
For single survivors, tackling the world of dating can present new challenges in the wake of a diagnosis and treatment. Many report feeling vulnerable about their history of illness in new relationships and worry about sharing their experiences with a potential partner.
Dr. Katz says that her single patients often have questions like When do I tell? What do I tell? How do I tell? They also wonder about how to broach sensitive subjects like breast reconstruction and fertility.
In response to this common vulnerability among patient populations, several new dating Web sites have emerged that specifically cater to single survivors and those in active treatment.
Dr. Bober says that, as is the case for anyone searching for a relationship, the question for survivors often becomes Where do you find a partner? The answer, she believes, is to “cast a wide net” and to avoid limiting your options. “It’s naive to think that because a person has the same illness they’ll be a match,” she says.
As far as the question of when to reveal a history of illness, Dr. Bober encourages patients to make individual choices about the timing but adds that the conversation really carries the same weight as those related to other important personal issues that you would want your partner to be aware of, including family or relationship history.
First, Know Yourself
“To enter a relationship, you have to be whole,” Dr. Katz says. “I think that before you start dating, you really have to be okay within yourself and have taken the time to mourn what you need to mourn—because you are changed. You are not the same person you were before.” To reclaim sexual health, she says, patients need to take the time to make sense of their experience and realize how they have been transformed.
And yet among the challenges that survivors face, there remain gifts. Dr. Katz says she feels humbled by the “heart-to-heart connectedness” she witnesses between couples who seek her services. In one recent session, a woman who had been sick admitted that she felt damaged and thought that her husband wouldn’t love her anymore. “He told her, ‘I love you regardless,’” says Dr. Katz. This type of unconditional love offers its own unique healing, allowing a patient to “fully realize that they are not alone.”
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