Publications
Insight, Summer 2008
Learn how to rekindle closeness with your partner in the cover story, "Getting Your Grove Back: Sexuality and Intimacy After Breast Cancer." Other features cover your choices in breast reconstruction, the experiences of a mother and daughter diagnosed with DCIS and LBBC's fall events on early and advanced breast cancer.
Table of Contents
Getting Your Groove Back: Sexuality and Intimacy After Breast Cancer
Before she began treatment for stage IIB invasive breast cancer at age 34, Dawn Reinhart, of Pittsburgh, Pennsylvania, classified her sex life as "fairly normal."
But like many women who have had breast cancer, Dawn’s diagnosis and treatment brought uninvited changes to her intimate life. After two surgeries, chemotherapy and radiation, she completely lost interest in sex.
"I couldn’t get aroused," she remembers. "Before my diagnosis, sex was something I wanted to do. But afterward, I would have rather done my taxes."
Although intimacy and sexuality may not be at the top of your agenda after a breast cancer diagnosis, as you go through treatment you may be anxious to reclaim your sexuality and get back to "normal." Low libido caused by treatment side effects, emotional stress, physical changes and communications challenges can make this difficult.
Breast cancer can change the way you feel about your body and how you interact with your partner, and learning practical methods to address these concerns can improve your quality of life.
Managing Physical Side Effects
Treatments and medicines to manage side effects coupled with the emotional trauma of diagnosis may cause physical problems that can result in low libido.
Charlotte Grieselhuber, 67, of Hamilton, Ohio, was diagnosed in 2007 with stage II invasive breast cancer. After undergoing a mastectomy and reconstructive surgery, she no longer has feeling in her left breast. Her right breast, which was lifted and reduced to match the implant, is sore to the touch, and she experiences pulling and tightening in the surgical area. This, combined with lymphedema and side effects of the hormonal therapy anastrozole (brand name: Arimidex), results in a lack of sex drive.
"Before treatment, I felt more like being touched," Charlotte says. "Now I have to make myself want to be intimate. I love to be held, but as to sexual contact, I have no feeling whatsoever."
Radiation therapy can cause redness and soreness, and many women are surprised and distressed at the lack of sensation or pain in their breasts after surgery. Kara Nakisbendi, MD, a gynecologist at The Nakisbendi Women’s Center in Ardmore, Pennsylvania, and a member of LBBC’s Medical Advisory Board, says it’s important to communicate with your partner about whether you want your breasts touched. If you do not, you may have to change up your sexual routine.
"Take things slowly with your partner, and continue to be physically intimate by holding and kissing," Dr. Nakisbendi says. "Let your partner know that your body has changed."
Reduced levels of estrogen because of premature or sudden menopause can cause vaginal dryness and tightness, resulting in painful intercourse. Sometimes the muscles in the vagina contract involuntarily, causing pain upon penetration, a condition called vaginismus. Women who suffer from these conditions often dread intercourse and avoid sex.
Dr. Nakisbendi advises starting with over-the-counter lubricants for vaginal moisture. A product called Replens can be used twice weekly to create moisture in the vagina. Additional Replens or other lubricants such as Astroglide can be used at the time of intercourse. If you need lubrication over a longer period of time, try coconut, almond or olive oils (do not use with condoms). With condoms, make sure you use only water-based or petroleum-based products.
Vaginismus can be treated with physical therapy and with a vaginal dilator, a rod or tube used to enlarge or stretch out the vagina and help the vaginal muscles relax and adapt to penetration.
"It is also a way for women to connect with their pelvis and relearn their anatomy while feeling in control," Dr. Nakisbendi says.
If dryness or pain is still a problem despite lubricants, consider discussing vaginal estrogen therapy with your healthcare team. The vaginal ring (Estring) and the vaginal estrogen tablet (Vagifem) release low levels of estrogen just to the vaginal area. Many doctors are comfortable with using these products, but talk to your medical oncologist before beginning any new treatments.
Dr. Nakisbendi recommends experimenting with different positions during intercourse. Some, such as lying on your side with your partner behind you, can relieve pressure on sensitive vaginal areas and areas healing from breast surgery. Starting with pleasurable activities before intercourse, like a hot shower or a massage, can be helpful as well.
Vaginal sex is just one part of lovemaking. Exploring each other’s bodies, without touching the breasts or genitalia, can help relieve performance anxiety, allowing you to relax and enjoy the good sensations.
If you are single, you should try to stay in touch with your body. "Self-exploration allows you to see how things have changed, so you are not learning all of this when you are beginning a sexual relationship with someone. That way, when you do find someone, you can communicate what you like to them," Dr. Nakisbendi says.
Body Image and Intimacy
Even if you don’t experience physical side effects, breast cancer can have an upsetting impact on your feelings of attractiveness and desirability.
For many women, the breast is an important symbol of sexuality and closely tied to body image. If you are single and dating, you may be even more fearful of changes in your appearance and how it will affect potential relationships.
"Many women feel like their breast betrayed them," says Barbara Rabinowitz, PhD, MSW, RN, director for oncology for Meridian Health System in New Jersey and a member of LBBC’s Medical Advisory Board. "Many report that they just don’t feel the same afterwards."
Chemotherapy side effects such as hair loss, dry skin and mood changes may also impact how you see yourself as a vibrant, sexual woman. Dawn recalls how she felt when her husband made a sexual advance during treatment.
"I said, ‘I’m fat, bald and mutilated. How can you possibly want me?’" she says. "I looked in the mirror and saw a monstrosity, but he looked in the mirror and saw his wife."
Creating and maintaining a good body image is a uniquely individual and extremely personal journey. It can be a slow process, but taking small steps to feel better about yourself can add up. Focus on the physical traits you like. Wear sexy lingerie, get massages, take bubble baths and exercise. Keeping the lines of communication open with your partner also can be an important first step.
"For women to be able to talk about their feelings about how their body has changed, and hear from their partner how much their partner doesn’t consider them a breast, but a loving and important woman in their lives, is so important," Dr. Rabinowitz says.
Dr. Nakisbendi agrees. "Some women have the idea in their head that their [partner] doesn’t want to see their scars, or that their scars would be extremely upsetting to their partner," she says. "But when they ask, they find it’s not really true—it’s something they created in their own mind."
Let’s Talk About Sex
Communication is key when it comes to building and maintaining intimacy, but discussing sex with your partner can sometimes feel overwhelming or awkward.
"Talking about sexuality in our culture is not something we are gifted in," Dr. Rabinowitz says. "Couples are not trained to address delicate issues, and they often don’t know how to talk on that level."
So where to start? Dr. Rabinowitz suggests reading chapters from a book, such as Sexuality and Fertility after Cancer by Leslie R. Schover, PhD. Then discuss how you felt, and what you learned, with your partner.
"It feels safer because it’s more distant, which can make it easier to move into more intimate conversation," Dr. Rabinowitz says.
Dawn took a direct approach. "No woman’s partner is a mind reader. Sometimes they don’t understand if something hurts, or you don’t want to be touched in a certain place. I told my husband, ‘I want to be intimate with you, but I’m not sure I can consummate the act. Let’s see how far we can go,’" Dawn says. "You need to think about why you fell in love with your significant other in the first place, and try to get back to that place."
It can also help to acknowledge how hard it is to talk about sex. Ask to sit down for 15 minutes, and let your partner know there is something on your mind that you have trouble talking about. If you feel disappointed by what your partner says, approach it positively, Dr. Rabinowitz says. Instead of saying, "You never approach me anymore. You never hug and kiss me anymore," try something like, "I am wishing we could kiss and hug more spontaneously. Can we think about building that back again?"
Charlotte says attending a regular support group at The Wellness Community has helped her facilitate conversation with her husband and know that they are not alone.
"You have to talk about it as a couple, and spouses need to realize what their partner has gone through," she says.
Reclaiming Desire
It is important to remember that sexual desire and pleasure differs from person to person, and physical, emotional and spiritual changes can have a permanent effect on your physical relationship. Rebuilding your sex life can take time and patience, and you may have to establish new baselines.
Dawn’s hair grew back, her weight dropped and she "got back to the business of living," but she still had no desire for sex. Then, three years after her treatment ended, she attended a Pure Romance in-home party. She purchased lubricant and arousal cream, which helped her so much that she decided to join the company. She is now a certified presenter for Pure Romance’s Sensuality, Sexuality, Survival program and helps other women to reclaim their sexual selves.
"Psychologically, adding something different to the routine helped me to relax and let go, allowing me to forget about hang-ups like vaginal dryness," she says. "I started to look forward to sex again."
Using an adult toy, such as California Exotic Novelties’ Papillon Massager, can help stimulate blood flow to the clitoris and enhance desire. The Papillon Massager comes in LBBC’s signature colors—purple with gold—and is available at adult toy and novelty retail locations nationwide. A portion of the proceeds will be donated to LBBC.
"A lot of times, [women] come from a neutral place as far as interest in sex. If you don’t worry about whether or not you are interested and just allow yourself to enjoy the sensations, your body will respond. With the right stimulation, your body will release endorphins and you will become interested," Dr. Nakisbendi says. "It’s like exercise—you may not feel like doing it, but once you do, it feels really good."
In same-sex relationships, it is common for the partner who was not diagnosed with breast cancer to worry about her own breasts. It is also common for her to experience "survivor guilt."
"When you start getting breasts involved, it becomes an immediate reminder and anxiety floats to the surface," Dr. Rabinowitz says. "Nothing kills sexual desire faster than anxiety, and sometimes it takes work to get it out of the bedroom."
Regular exercise can help enhance desire by increasing blood flow to the brain and genitals and helping you to feel better about yourself. Exploring sexual fantasies, reading erotic literature, and watching erotic films—as well as good nutrition and sleep—also can help you get in the mood.
Building a New Intimacy
If you had a strong partnership before cancer, you will likely have one after cancer, but you also can use your diagnosis as a way to create more intimacy emotionally, physically and sexually.
If you feel like you are stuck, you may want to speak with your doctor or a sex therapist.
"Sex after cancer is something you have to relearn because your body changes, but it can be done," Dawn says. "I can honestly say my sex life is more fulfilling after cancer than before because [my partner and I] have taken the time to adjust to each other. It’s more challenging, and therefore it’s more rewarding. There is hope."
Breast Reconstruction: Options, Expectations and Alternatives
Mindy Troge, 40, a teaching assistant from Stormville, New York, had mixed feelings before her mastectomy for stage I breast cancer five years ago.
"There was that sense of relief that the cancer is leaving your body, but the idea of losing a breast was very devastating," Mindy says.
Many women share Mindy’s concerns about losing their breasts. Deciding about breast reconstruction is personal and can be difficult when you also are making sense of your treatment options. While many women choose reconstruction, others feel comfortable wearing a breast form or living without a breast. Understanding your options early on will help you make an informed decision based on your treatment, quality of life and overall health.
Getting Started
The best time to gather information about reconstruction is before your mastectomy. If your doctor does not mention reconstruction and you have interest in it, you have the right to request a referral to a specialist.
"It is important to find a good fit in terms of personality, goals, office environment and office staff when searching for a plastic surgeon," says Karen Horton, MD, FRCSC, of Women’s Plastic Surgery in San Francisco.
Your surgeon will help you decide whether to have immediate reconstruction, which is done right after your mastectomy, or delayed reconstruction, which can occur months or years later. Your choice may depend on your treatment plan and personal preferences.
Mindy was eligible for immediate reconstruction because her upcoming treatments would not affect the surgery. She also felt mentally prepared.
"I had no desire to leave the operating room and see myself without a breast," she says.
Immediate reconstruction is not appropriate for all women, says Dr. Horton, and many women do not feel comfortable deciding right away. Delayed reconstruction is a good option if you are undergoing radiation, which may damage reconstructed tissue or cause scarring around an implant.
You may be a candidate for breast reconstruction if you completed treatment years or decades ago.
"There are no age limits," says Dr. Horton. "As long as a woman is healthy enough to undergo surgery, she can have breast reconstruction."
You may want to ask whether reconstruction will impact future breast cancer screening. "Reconstruction does not change your risk of having breast cancer on the other side, and it does not usually change the ability to detect recurrence on a mammogram or MRI," Dr. Horton says.
Choosing Implants
Michelle Palazzo, MD, 38, of Louisville, Kentucky, was diagnosed at age 34 while training to become a plastic surgeon. She was offered the choice of a lumpectomy with radiation or a mastectomy. Michelle chose a mastectomy and expanders followed by silicone implants.
"Because of my job, I could only take so much time off, and the expander implant reconstruction option had the shortest recovery," she says. "I was fairly thin at the time, so tissue surgeries weren’t a good option for me."
Implants are available in various shapes and sizes. They may be a good option if you have small breasts, you are thin and cannot use tissue from other parts of your body or you prefer a surgery with a shorter recovery time. Silicone gel implants are similar to a natural breast in texture and shape. Saline implants, which consist of a silicone shell filled with a salt water solution, feel more like a water balloon.
"Saline-filled breast implants can ripple a little more than silicone, and they can feel more cool," says Dr. Horton. Depending on the thickness of your remaining breast tissue, you may feel the implant shell if it is saline-filled.
With immediate reconstruction, a plastic surgeon inserts an implant during the mastectomy surgery. In delayed reconstruction, an implant shell called a tissue expander is inserted into your chest. Every few weeks your surgeon will expand the muscle and breast tissue by injecting liquid into a valve, or port, under the skin that is connected to the tissue expander.
The expander will be replaced with either a saline or silicone implant when the breast reaches the desired size. Filling the tissue expander with saline solution may prevent the need for additional surgery. You may need more surgery if the implants rupture or leak or if you experience capsular contracture, the formation of a scar around the implant that could cause breast hardness.
Two years after her initial surgery, Michelle exchanged her implant when it rotated and disrupted the symmetry between her breasts. Her surgeon used the original incision to remove the implant, adjust the pocket (the area holding the implant) and insert a new implant.
Using Your Own Tissue
Tissue flap reconstruction may be a good option if you have excess body tissue in your abdomen, thighs or buttocks, says Dr. Horton. Compared to implants, tissue reconstruction may feel more natural and may age better as you grow older.
One type of tissue reconstruction uses muscles and tissue from your abdomen or back to fill the breast without disconnecting the tissues from your body. During transverse rectus abdominis musculocutaneous (TRAM) flap surgery, fat and muscle from the lower abdomen is pulled through a tunnel under the skin to the breast area. In the latissimus dorsi flap, a surgeon slides skin, fat and muscle from the mid back area under the arm to the breast.
Another type of tissue reconstruction, called a "free flap," is an operation in which tissue from the abdomen, buttocks or inner thigh is removed completely and transferred to the breast. A specially trained plastic surgeon called a microsurgeon attaches blood vessels from the transferred tissue to blood vessels in the breast to enable blood flow.
Free flap procedures include deep inferior epigastric artery perforator flap, or DIEP, and superficial inferior epigastric artery flap, or SIEA. In both procedures, skin, fat and blood vessels from the lower abdomen are moved to the breast area without sacrificing the rectus abdominis muscle. If you do not have excess abdominal tissue, ask your surgeon if you are a candidate for surgery using tissue from your inner thigh (inner thigh of TUG flap) or buttocks (S-GAP flap).
Share details about your lifestyle and health history to help your doctor determine if you are a candidate for microsurgery.
Tissue-based reconstructions create a small risk for necrosis, or death of tissue that forms lumps of fat in the breast. Necrosis may occur immediately after microsurgery if the blood vessels are not reconnected properly. After TRAM flap surgery, some women develop abdominal muscle weakness, hernia or bulge, says Dr. Horton.
Knowing Your Expectations
Before settling on a TRAM flap, Mindy, a stay-at-home mother of two, worried about muscle weakness affecting her ability to do household chores. On the other hand, she "liked that the TRAM flap would age naturally with my body because it was made of me."
To ease her mind, Mindy asked her plastic surgeon when she could return to activities such as driving and grocery shopping. She coordinated family members to help with her kids.
Like many women, Mindy was not sure how her breast would look and feel. "It took me five days to look at it," Mindy says. "When I did, it was really fine. But there was no nipple; it was basically a mound. It was odd getting used to it without a nipple."
Mindy still cannot do some exercises she did before her surgery, but she is pleased that her tissue reconstruction created a natural-feeling breast.
Michelle had realistic expectations about the look of her breast because of her work in plastic surgery. She was unprepared, however, for the lack of sensation and emotional impact of losing her nipple, even though she had a new nipple reconstructed and tattooed on her breast.
"With the nipple being gone, it is kind of like a lump of tissue," she says. "I wish I had sensation on both sides, because it does play a role in sexual interaction. But on the other hand, one gets double duty!"
Most women lose sensation in the nipple area after reconstruction. But reconstructive surgeons can create a nipple that looks lifelike.
Some surgeons use tissue from the thigh or labia, the folds of skin outside the vagina, to reconstruct the nipple and areola, the round dark-colored skin that surrounds the nipple. This skin can be tattooed to match the original nipple. Other options are to use removable nipples made of polyurethane, a flexible type of plastic, or to have nipples tattooed onto the breast.
Among those with one natural breast, a common concern is that while the unaffected breast sags with age, the implant remains high and "perky."
Dr. Horton recommends seeking improvement if you are not satisfied with the cosmetic results or if your breasts age at different rates. You can always change the type or shape of the implant or reconstruct to a flap altogether, she says.
By law, most insurance companies cover reconstruction, and many cover surgery to the opposite breast to achieve symmetry. Check with your insurance company and doctor’s office for information on your out-of-pocket expenses. Medicare may cover breast reconstruction of the affected and unaffected breasts after mastectomy. If you have Medicaid, contact your state office to find out whether your policy covers reconstruction.
Living Without a Breast
Joanna Kelley, 69, a bookkeeper and administrative assistant from Pioneer, Tennessee, was preparing for a mission trip to Thailand in January when she found out that she had breast cancer. After returning in February, she chose a double mastectomy because of her family history.
Joanna considered reconstruction but was concerned about the safety of silicone implants. She decided to postpone the decision when she found out she could not have a TRAM flap. Her doctor said that her abdomen had been weakened from gastric bypass surgery in 2003 and likely would become weaker with more surgery. Having been a size 42C, Joanna worried about the upcoming changes.
"The question I dealt with was, ‘How will I feel every morning when I get up and realize how flat I am?’" she remembers. "But after I was home for a few days, I thought, ‘This doesn’t change who I am. My breasts didn’t make me.’"
Joanna thought special padded bras were "uncomfortable and heavy," so she decided to wear camisoles and tops.
"Before surgery, I thought it would be a hard decision, but I am perfectly okay with it," she says. "I’m just going to go natural."
If you prefer a breast form, or prosthesis, they are available in several materials, including silicone, fiberfill and a lightweight foam that many women find most comfortable after surgery. Some prostheses can be weighted to improve posture. Several companies make bathing suits and lingerie for women who have had mastectomies, complete with pockets to hold a prosthesis.
Making Decisions
If you want to connect with someone who has made a decision about reconstruction, call our Survivors’ Helpline at (888) 753-LBBC (5222).
Over time, Mindy has gotten used to her breast, and through her local cancer organization she talks to other women making decisions about reconstruction. She helps them understand the importance of finding the right doctor, asking informed questions and finding out the options available to them.
"I don’t think about it as my reconstruction anymore," she tells them. "I think of it as my breast."
Additional Breast Reconstruction Resources
Many breast cancer organizations and companies post useful information about breast reconstruction on their websites. Here is a small selection we found helpful in writing this article:
- womensplasticsurgery.com, created by Dr. Horton’s practice, contains information on the types of reconstruction and the risks and benefits of each type of surgery
- breastimplantanswers.com offers information on the science and safety of breast implants
- microsurgery.net provides details on free flap procedure basics
Breast Reconstruction: Questions to Ask Surgeons You Interview
You may find it helpful to have a list of questions to bring to your doctor's office. Print out this page and take it with you to your appointment. Add your own questions to the list.
- What percentage of your practice is breast reconstruction?
- Will you show me before-and-after photos of women with the type of reconstruction I’m considering?
- May I speak to some of your patients about their experiences?
- What are complication rates in this practice, and what are the potential complications of my surgery?
- If complications happen, how do you manage them?
- What are the best and worst case scenarios for my procedure?
Family Facing Breast Cancer Asks Questions About Environment
Growing up in the 1950’s near St. Petersburg, Florida, Karin Ziedman and her friends played beneath the cooling shade of trees as the "fog trucks" drove by. The trucks, a fact of life during that era, exhaled clouds of DDT, an insecticide once widely used against mosquitoes and other disease carriers. In 1972 the government banned DDT after studies showed it sickened plants and rivers.
Karin, 60, had not thought about the trucks for years. But when she and her mother were diagnosed with ductal carcinoma in situ (DCIS) within months of each other, the memory flooded back.
"When I got the call from my mom, I thought, ‘Geez, this is really weird,’" says Karin, who was undergoing radiation treatment at the time. "I kept asking, ‘I wonder whether there’s some environmental issue here?’"
Asking questions comes naturally for Karin. A health outreach specialist now living in Middlebury, Vermont, Karin gathers and analyzes data to serve her clients. After her diagnosis, Karin turned her attention to understanding her treatment options.
"I like to go over pros and cons of things, just to get an idea of where I might stand and the right path to take," Karin says. "The answer isn’t always there—sometimes it can be confusing—but the more information you have, the better."
Karin’s experience with breast cancer began with an annual mammogram at her community hospital. The doctors found a "suspicious area" and asked her to come back for an ultrasound and biopsy. She waited a week for the results.
"I know from my job that a lot of women have to go back for close ups, and usually a very small percentage have cancer," she says. "But I was anxious about it. I went back and forth in my mind."
Karin’s husband, a retired chiropractor, supported her by researching doctors and hospitals. By the time Karin was diagnosed, the couple had already decided to get treatment at Fletcher Allen Health Care, a breast center about 35 miles from home.
"They have a team approach that I appreciate," Karin says. "They were very good about explaining my options and giving me lots of materials. If you have to have breast cancer, it’s a great place to be."
A surgeon performed a lumpectomy and removed a sentinel lymph node. Tests showed the cancer was very small and confined to the breast ducts, so Karin would not need further surgery. She began six weeks of daily radiation therapy. Karin’s radiation oncologist gave her almond oil and aloe, which protected her skin from drying, burning and peeling. The most tiring part of treatment, Karin says, was the two-hour round-trip drive to Fletcher.
"I had to miss work, and I used up all my sick leave," she says. "But my husband drove me to radiation every day. He was there for me, all along."
Because the cancer tested positive for estrogen receptors, Karin’s medical oncologist recommended two years of tamoxifen followed by three years of an aromatase inhibitor. Karin takes the tamoxifen every morning with her vitamins. The hot flashes Karin put behind her after menopause returned. To combat them, she takes advantage of Vermont’s weather, stepping outside when she needs to cool off.
Karin’s mother, Ruth Groen, 86, lives in Connecticut. Unlike her daughter, Ruth hesitated to go for her annual mammogram. Because she no longer drives, getting to the hospital was difficult. And after so many years cancer-free, Ruth believed breast cancer was unlikely.
"A lot of elderly women have this same attitude—I see it at my job," Karin says. "They say, ‘Well, I’m 87, I’m never going for a mammogram again. And if it hasn’t happened by now, what’s the difference?’"
Ruth’s doctor and Karin insisted, and Ruth ultimately received a diagnosis identical to her daughter’s. The recommended treatment was a lumpectomy followed by daily radiation treatment for six weeks and five years of an aromatase inhibitor.
Because of her age Ruth faced different challenges than Karin. Ruth has a history of heart disease and breathing problems, so she stayed in the hospital for four days after the lumpectomy, a surgery Karin did as an outpatient. Visiting nurses and a physical therapist came to Ruth’s home to help her exercise her arm, get enough to drink and empty drains. Ruth lives alone and relied on volunteers to drive her back and forth to radiation treatment. The efforts paid off, and today Ruth is doing well.
Both mother and daughter view treatment as "just something you have to do." But Karin believes her diagnosis may have helped her mother come to terms with what she would go through.
"Since I had just been through it, she knew what to expect," Karin says. "That made her more comfortable with it; [my experience] made it easier for her."
Karin says her diagnosis forced her "to make sure I’m not frittering away time." She and her husband plan to scale back by moving to a smaller home and getting rid of things they no longer need.
One concern is how the family’s breast cancer history could impact Karin’s college-aged daughter. In July 2007, Karin read a journal study showing an increased risk of breast cancer in women exposed to DDT before breast development. Other reports show DDT remains in the bodies of animals for two generations.
As someone who keeps an eye on research, Karin knows how little we understand about the impact of environmental factors on cancer development. But the issue tickles Karin’s curiosity.
"We were so happy to be relieved of those nasty mosquitoes that no one thought we might be adversely affected later on in life," Karin says. "It makes me wonder about the strange coincidence of contracting breast cancer the same year as my mother."
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