Breast surgery and sexuality 

Some women worry that breast surgery will compromise their sex lives, especially if the whole breast is removed (mastectomy). Women often have input about whether to have a partial or complete mastectomy. Meeting with an experienced breast cancer surgeon is helpful.  Several types of breast reconstruction are available. Since breast reconstruction can involve multiple procedures, some women may opt to “go flat”—which means having mastectomy without reconstruction. Most women now have sentinel node biopsies versus axillary node dissection which means that usually just one or two lymph nodes are removed to check whether the breast cancer has spread. Women who have a sentinel node biopsy are far less likely to get lymphedema (chronic swelling in the arm because lymph fluid builds up).  

Women vary in how important breast caressing is to their sexual pleasure. The nerves that send messages of pleasure to the brain travel from the nipple through the center of the breast. Those nerves are lost after total mastectomy. Even the best breast reconstruction cannot restore the sexual pleasure a woman gets from caressing of her nipple. For most women, even the skin on a reconstructed breast has only a mild amount of sensation. Creating a new nipple or even preserving the nipple and breast skin can make the reconstructed breast look less changed, but it does not restore feeling. 

Radiation therapy and sexuality 

Radiation therapy can also be used for the treatment of breast cancer. Although modern techniques for radiation have made them less destructive to tissue, there is still the potential for short-term and long-term side effects that can impact sexuality, Local changes to skin such as swelling, and skin irritation can make it uncomfortable to have the area touched. For some women, radiation therapy can cause long term changes to the size and firmness of the breast which can impact sexual thoughts and behaviors. Changes in libido may also result from fatigue caused by radiation treatments. 

As a result of breast cancer treatment, the sensation and pleasure you used to experience from the breast and nipple may feel different now. There can be a sense of loss and grief over how you experience arousal and sexual feelings from the changes associated with treatment. Changes to your body can lead to feelings of anxiety and fear when you engage in sexual encounters. You may benefit from further support by talking with an Iris Mental Health Therapist.  

Chemotherapy and Sexuality 

Chemotherapy is a major cause of sexual issues for women with breast cancer, particularly for women who are not yet menopausal when their breast cancer is diagnosed. Chemotherapy for breast cancer can damage a woman’s ovaries, leading to premature ovarian failure (POF). Menstrual periods become irregular and then stop. Menstrual periods may return in younger women, mainly those under age 35. A number of women between 35 and 40 regain menstrual cycles at least for a while. However, women who had a pause in their cycles are at elevated risk to reach permanent menopause at a younger than average age. The older a woman is at diagnosis, the more likely that ovarian failure caused by chemotherapy will be permanent. 

During chemotherapy, some women get vaginal irritation. If women try to have intercourse at these times, it can be very painful. Women also may be more likely to get vaginal and urinary tract infections during chemotherapy. Make sure to use a good lubricant and to urinate after intercourse. If you notice that the lining of your vagina is irritated, hold off on having sex until the soreness and irritation is gone. 

After chemotherapy, women in premature ovarian failure can experience vaginal dryness and pain. The pain can contribute to a loss of desire for sex. Pain may be decreased or prevented by using water or silicone-based lubricants plus regular use of vaginal moisturizers. Unfortunately, cancer survivors rarely get practical instructions on how best to use these nonhormonal options, so it is important to talk to your providers or Iris team.  

Even in postmenopausal women, chemotherapy can interfere with sexual enjoyment. Women who had chemotherapy may have less desire for sex because of chronic fatigue, distress about weight gain, taking medications that blunt desire (including antidepressants, anti-anxiety medications, and pain medications).  

Younger women who have chemotherapy usually have some damage to their fertility. If possible, women who desire future children should preserve their fertility by freezing oocytes or embryos before cancer treatment. They may also consider taking a drug to put the ovaries into temporary menopause during chemotherapy if recommended by their team. 

For women who were not yet in menopause before chemotherapy, the combinations of drugs used in recent years, such as doxorubicin and cyclophosphamide (AC) or doxorubicin, cyclophosphamide, and paclitaxel (ACT) are less likely to cause premature ovarian failure compared to the older standard of cyclophosphamide, methotrexate, and 5-fluorouracil (CMF). The taxane chemotherapy drugs (paclitaxel or docetaxel) can damage the ovaries, but not as strongly as alkylating drugs like cyclophosphamide. The amount of damage from chemotherapy to a woman’s ovaries is greater if she is older (closer to 40 or 45) and if she gets a higher dose of drugs. Premature ovarian failure (POF) often leads to problems of hot flashes, vaginal dryness, and infertility. In these cases, make sure to discuss any side effects with your provider.  

Hormone Therapy and Sexuality 

Women with breast cancer may be given hormonal therapy (otherwise known as endocrine therapy). Hormone therapy can be very effective and is used for different goals depending on the patient’s circumstances. Hormone therapy may be used to prevent breast cancer in women who are at very high risk to develop the disease. It may be used to prevent a recurrence or second cancer in women already treated for breast cancer, to shrink a cancer before surgery, or to treat cancer that has moved beyond the breast. Each class of hormone therapy has a unique effect on sexual health.  

• Tamoxifen: Tamoxifen (Nolvadex) is a Selective Estrogen Receptor Modifier (SERM). It binds to the “keyhole” that normally lets estrogen get inside of a cell. This blocks estrogen from entering and stimulating cancer cells to grow. Most studies of women taking Tamoxifen after breast cancer have not found a negative impact on sexual function. In a woman who is not menopausal, tamoxifen will usually increase hot flashes, but it actually raises estrogen levels in the blood. Women tend to have more vaginal lubrication while taking tamoxifen, which may help prevent pain during sexual activity. However, the estrogen-like action of tamoxifen increases a woman's risk of uterine cancer while she is taking the hormone so regular gynecologic care is important. 

•  Aromatase Inhibitors (AIs): Aromatase inhibitors are used to prevent or treat breast cancer in women who are past their menopause. They include the drugs letrozole (Femara), anastrozole (Arimidex), and exemestane (Aromasin). The medications in this class have similar sexual side effects. 

Postmenopausal women still produce some estrogen, especially in their fat cells. AIs prevent any estrogen from being made outside the ovaries. Unlike tamoxifen, AIs make menopausal genital dryness and shrinkage much worse. Perhaps a quarter of women stop engaging in sexual activity because it is so painful. Coping with vaginal dryness is more challenging for women taking aromatase inhibitors, but with some experimenting and patience, pain with sex may improve. It is important to start using nonhormonal vaginal moisturizers and lubricants as soon as AIs are prescribed, even if you do not yet notice a difference during sex. It may also be helpful to stretch out the vagina at least a couple of times a week with vaginal dilators or sexual penetration.

Some doctors do not want women on AIs to use even low-dose vaginal estrogen, out of concern that it could raise the amount of estrogen in the bloodstream enough to make AIs less effective. AIs also increase hot flashes, but their other highly troublesome side effect is that many women get muscle, joint, and bone aches, especially stiffness in the hands or other areas in the morning, or after sitting still for a long time. This pain is especially likely in women who already had arthritis. Sometimes switching from one AI to another will gradually reduce joint pain. Ask your oncology or Iris team for help.  

• GnRH agonists or antagonists: GnRH agonists or antagonists (including Lupron, Zoladex, and Cetrorelix) put a woman into temporary menopause by slowing or shutting down your ovaries. They may be given as a shot or in a nasal spray. GnRH agonists are increasingly used to treat breast cancer in young women, combined with an AI. The sexual side effects of shutting down the ovaries and adding an AI can be severe, with dryness, pain with sex, and decreased sexual desire. 

GnRH agonists also have been used to try to preserve fertility during chemotherapy or radiation, since a less active ovary may escape some damage. The jury is still out on whether this makes a difference in future fertility. GnRH agonists by themselves can cause severe hot flashes and vaginal dryness but the side effects usually stop within a month or less after a woman stops taking them. If side effects become intolerable, discuss with your oncologist to see if there is an alternative.  

• Staying on Your Hormone Therapy: As high as 50% of women with hormone receptor breast cancer discontinue their hormone therapy early due to adverse side effects, some being related to their sexual health. It is very important to stay on the therapy recommended by your oncologist while advocating for your quality of life. Often, sexual side effects can usually be eased with non-pharmacological measures such as vaginal lubricants, sexual counseling, or lifestyle changes, depending on the problematic effect.  In addition, if side effects such as muscle pain or vaginal dryness from an AI is intolerable, switching to another medication in that class, may give you most of the breast cancer benefit with a better side effect profile. It is always important to talk to your team about your hormone therapy and do all you can to minimize damage to your quality of life. 

Targeted Treatments and Sexuality 

An increasing group of women are treated for breast cancer with immune therapies, including immune checkpoint inhibitors. These drugs help the immune system target and kill cancer cells. Checkpoint inhibitors can be very well tolerated but have unique side effects that impact some patients. For example, this class of medications may trigger diabetes or inflammation of the skin, colon or lungs. They also can affect daily life in ways that may decrease interest in sex by causing side effects like diarrhea, fatigue, coughing, nausea, rashes.  Researchers have not studied women’s sex lives during targeted therapies like immunotherapy.  In time, our understanding will evolve about the direct effects of these new treatments on hormones and sexual function.