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The Breast Cancer Nurse Navigator's Role: Discussing Sexuality and Intimacy with Your Patients

November 11, 2010 | AONN+ Blog | Breast Cancer
Featuring:
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Editor-in-Chief, JONS; Co-Founder, AONN+; University Distinguished Service Professor of Breast Cancer, Professor of Surgery, Johns Hopkins University School of Medicine; Co-Developer, Work Stride-Managing Cancer at Work, Johns Hopkins Healthcare Solutions

If all breast centers had Dr Ruth as a faculty member, there would be no need to write this article. But they do not. It is important to bring up this sensitive topic early in your interactions with your breast cancer patients. Usually the first thing a woman worries about, however, is her mortality. Is she going to survive her breast cancer diagnosis? After she realizes that she probably will, her focus often shifts to her sexuality and body-image concerns. Will she lose her breast to this disease? Will she appear disfigured in the eyes of her partner and/or herself? What impact will her breast cancer treatment have on her body image? On her sex life? These are all valid concerns that are rarely discussed by the oncology specialists taking care of her. Their focus is on saving her life and not necessarily spending their consultation time and treatment sessions discussing quality-of-life issues. 

That's why it's so important for someone to assume this role on behalf of the patient. Let's take a look at how the various phases of treatment impact her image of herself and her sexual activities.

  1. Surgical treatment— Whether it is lumpectomy or mastectomy, it's important for you to know your patient's relationship with her breasts. That may sound odd, but it truly will sum up for you how easy or hard the surgical outcome from a cosmetic perspective will be. If she feels that her breasts are her best feature, then any scar on one of them is going to affect her self-image. If she says that they have fulfilled their purpose, which was to breast-feed her children, and that she doesn't find them impactful when making love or thinking about her own sexuality and womanhood, then even a mastectomy may be an easier adjustment for her than the lumpectomy for the previous patient described. Some women even opt to have bilateral mastectomies with reconstruction for a secondary purpose—that of getting perkier breasts with implants or getting a free tummy tuck that can be achieved through flap reconstruction. It is important to discuss with her if nipple sensation is important to her and if so to what degree. Some women will opt to have a large lumpectomy that may not have the best cosmetic result with the goal being to maintain nipple sensation. Each woman is different.It's also important to talk with her husband/partner. Ideally, the patient and partner should have an opportunity to see photographs or even meet with a breast cancer survivor volunteer who has had the same surgical procedure, especially if mastectomy, with or without reconstruction, is the surgical plan of care. The expression on the partner's face the first time he/she sees the patient's incisions/scar is something the patient will remember forever. If, merely due to the fact that this is a new experience with no previous knowledge or preparation of what to expect, a partner could look confused, which might be misinterpreted by the patient as a look of disgust. Nonverbal communication can have a huge effect. Giving the partner the opportunity to prepare for the unveiling can be a key responsibility of the nurse navigator. For women having reconstruction in stages, it's good to let the patient and partner know that she is a "work in progress," like a famous painting, and to not judge her appearance prematurely.
  2. Chemotherapy— Even though hair loss is temporary, losing hair for many women can be a bigger deal than losing her breast. It is a physical symbol that she is a cancer patient. Her hair may be her crowning glory, and it is being stolen away from her. Needless to say, people look a bit odd without their hair. Giving her specific information about when to anticipate hair loss is important. Even describing the process of it falling out (ie, that it happens usually within a 24-hour period on day 10 to 14 after the first chemotherapy treatment) is very helpful. Arranging for her to be fitted for a wig in advance of hair loss is wise as well. If her hair has any length to it, encourage her to consider getting it cut short, so it is a bit less traumatic when alopecia strikes.If 9 inches or longer, talk with her about donating her hair to Pantene's Beautiful Lengths program, which will take the hair and make a wig for a child suffering hair loss from chemotherapy. Many women ask about getting a wig made out of the own hair, but, unfortunately, that takes too long. By the time this gets accomplished, her new postchemotherapy hair will have grown in. Direct her to places that offer hats, scarves, turbans, and other head coverings too. Some women are up for doing their own buzz cut before hair loss. Engaging children in the process can be good, as a way to prepare them for seeing their mom without hair. Planning a "coming out party" for her hair can be a fun way to get friends and family engaged in supporting her by bringing her various hats and other head coverings. (It's like a baby shower but for the patient's head instead.) Younger children might get assistance from an adult in decorating a hat for their mommy to wear. Some women even do a buzz cut at such a gathering. A few spouses have shown their support by doing the same.Now add fatigue, menopausal symptoms, lower libido, and weight gain to this picture and it becomes very obvious that the patient's interest in embarking on sexual activity may be slim to none. Again a healthy discussion about sex with her and her partner is useful so that both know what to expect. Some women, however, do still feel comfortable having sex. It varies. It is wise to advise the patient that she should avoid having oral sex performed on her during the first 24 to 36 hours after her chemotherapy treatment as some of the medication can be excreted through the vaginal mucosa.
  3. Radiation— Fatigue is the issue here. And it is cumulative. Exercise, including sexual activity, can be helpful in reducing fatigue from happening, however. It may not sound logical, but evidence-based research has proven it to be so.
  4. Hormonal therapy— Menopausal symptoms can directly affect the patient's interest and ability to engage in sexual activity. Because hormonal therapy lasts for years, this can be a reason for patients to choose to not adhere to the treatment as prescribed. Their frustrations with hot flashes, night sweats, vaginal dryness, insomnia, mood swings, joint pain, and low libido can become so overwhelming for her (and her partner) that she decides to stop taking the drug or takes it less often than daily. You can assist her by discussing ways to reduce these side effects so that she can remain sexually active to the degree she desired as well as help relieve or at least diminish these side effects. Vaginal lubricants, wearing cotton clothing, making sure her vitamin D3 level is within normal limits, and even considering taking medications (like venlafaxine) to diminish hot flashes, night sweats, and joint pain should be offered when appropriate.

If you currently aren't embarking on these discussions, consider doing so going forward. How a woman feels about her body, self-image, and sexuality can influence her overall well-being. It can also impact her compliance with treatment. Depression has been correlated to these concerns as well. You, in essence, become the Dr. Ruth for your breast center! 

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