Comments from Jennifer Luce, Living with Cancer
by Lillie D Shockney, RN., BS., MAS
Breast cancer remains the most feared disease of all women. There are perhaps many reasons for this however a compelling one is the fact that sexuality and body image are known to be psychologically connected to women’s breasts. Altering them by the required surgical interventions needed to treat breast cancer can cause tremendous anxiety and concern. Additionally, there are still women alive today who have endured a Halsted radical mastectomy, which was truly a debilitating and disfiguring surgical procedure for breast cancer treatment for more than a century. This procedure was commonly performed immediately following a surgical breast biopsy performed on the patient in the operating room with general anesthesia. The surgeon would send the biopsy specimen to pathology while the woman remained asleep. If it was positive for cancer then he would proceed in doing a Halsted radical mastectomy which included the removal of the entire breast, both pectoral major and minor muscles, scraping the ribs, and dissecting all of the lymph nodes in the armpit area, down to the lung cavity area. No reconstruction was performed. It was also common to need to take skin from her back or buttocks to be able to close the chest wound. The patient would awaken in the recovery room to then learn that she had breast cancer and that her breast and underlying anatomic tissues were gone.
Today, though treatment, including surgical management, has greatly improved, this disease still stirs up fear of death, disfigurement, and loss of feeling like a sexual being again. Research has been conducted at a multitude of cancer centers focusing on the sexual functioning of long term breast cancer survivors. Some research has focused on the impact surgical treatment has had on sexual functioning and other research has been designed to focus on the impact adjuvant chemotherapy and/or adjuvant hormonal therapy has had on a patient’s sexual functioning and self image.
Much of the research on sexual functioning in breast cancer survivors has focused on women within 5 years of diagnosis. Within such a time frame, it is common for women to report sexual dysfunction issues felt to be caused by body image appearance following surgery and/or systemic treatment. Therefore it has been known for some time that treatment is a major contributor to these issues in the short term. Reported rates for specific problems range from a low of 15% for reduced physiological arousal to a high of 64% for reduced sexual desire. [i]
Some valuable instruments for measuring sexual function have been developed and proven helpful in quantifying the impact breast cancer treatment may have had on sexuality of the women treated for this disease. The MOS Sexual Functioning Score[ii] consists of four items assessing interest in sex, ability to relax and enjoy sex, arousal, and ability to have an orgasm. Other useful tools used have included the Multidimensional Fatigue Symptom Inventory as well as the Menopausal Symptom Checklist[iii].
The research results of various studies focusing on sexuality have verified that sexual dysfunction is not limited to the short term survivorship phase but continues onward, long after treatment has been completed. Contributing symptoms were vaginal dryness, night sweats, hot flashes, depression, lack of desire, inability to have an orgasm, and body image issues. [iv]
“A woman’s overall psychological health, relationship satisfaction, and premorbid sexual life appear to be far stronger predictors of post-cancer sexual satisfaction than is the extent of damage to her breast.”[v]
What is most telling, however, is that the primary cause of sexual dysfunction appears to not be associated strongly with loss of a breast as it was decades ago but instead caused by premature and severe menopausal symptoms caused by [vi]systemic treatment, primarily chemotherapy and hormonal therapy.
It is of importance to note as well, that today most women diagnosed with breast cancer are candidates for breast conserving surgery, enabling them to save their breast. Those needing mastectomy or choosing it as their surgical preference are able to receive reconstruction at the same time and have it covered by their health insurance courtesy of a federal law passed in 2008. (A woman’s most common motivation for breast reconstruction was the desire to feel whole again.)
How should women battling sexual dysfunction be helped to overcome this chronic problem?
- Promote the option for reconstruction when a woman is advised she needs mastectomy surgery as her surgical treatment.
- Encourage women to look at breast cancer surgery as transformation surgery—transforming her from a victim into a breast cancer survivor.
- Encourage her to remain active during treatment to avoid weight gain, a common problem during chemotherapy and while receiving hormonal therapy.
- Have the patient, and possibly also her partner, meet with a sex counselor to discuss ways to promote arousal and sexual pleasure. This can mean embarking on sexual activities that perhaps the couple has not necessarily embarked on before.
- Encourage the use of vaginal lubricants that are considered safe and effective for breast cancer survivors.
- Teach a patient how to perform relaxation techniques.
- Have her discuss with her medical oncologist if she will be allowed to use estrogen based vaginal creams to prevent vaginal atrophy and prevent vaginal dryness.
- Instruct the patient in the more common ways to reduce menopausal symptoms including avoiding spicy foods, wear layers of cotton clothing, invest in a pillow that remains cool all night. If appropriate meet with her oncologist about taking medication to reduce menopausal symptoms (such as Effexor).
- Communication is key with her partner, as a stressed relationship before, during and/or after treatment can obviously impede improvements in sexual health and wellbeing.
Quality of life is imperative and sexuality is clearly part of one’s quality of life. Survival is no longer the only clinical outcome measurement sought. Being aware of these known problems up front can be helpful to patients so that they can engage in a discussion early on with their oncology treatment team.
[i] Barni S, Mondin R: Sexual dysfunction in treated breast cancer patients. Ann Oncol 8:1-5, 1997
[ii] Syrjala KL, Schroeder TC, Abrams JR, et al. Sexual function measurements and outcomes in cancer survivors and matched controls. J Sex Res 37: 213-224, 2000
[iii] Broeckel Jo A, Thors C L, et al. Sexual functioning in long-term breast cancer survivors treated with adjuvant chemotherapy. Breast Cancer Research and Treatment. 75: 241-248.2003
[iv] Broeckel Jo A, Thors C L, et al. Sexual functioning in long-term breast cancer survivors treated with adjuvant chemotherapy. Breast Cancer Research and Treatment. 75: 241-248.2003
[v] Schover, LR: The impact of breast cancer on sexuality, body image and intimate relationships. CA-A Cancer journals for Clinicians. Vol 41. No 2. March/April 1991
[vi] Schover, LR: The impact of breast cancer on sexuality, body image and intimate relationships. CA-A Cancer journals for Clinicians. Vol 41. No 2. March/April 1991
University Distinguished Service Associate Professor of Breast Cancer
Adm Director of the Clinical Breast Programs and Adm Director of Cancer Survivorship Programs,
Johns Hopkins Hospital, SKCCC at Hopkins, and JH Medicine
Associate Professor in Dept of Surgery, and Dept of Gynecology, JHU School of Medicine
Associate Professor, JHU School of Nursing
Mrs. Lillie Shockney is a registered nurse with a BS degree in HealthCare Administration from Saint Joseph’s College and a Masters in Administrative Science from the Johns Hopkins University. She has worked at Johns Hopkins since 1983 and served as the Administrative Director since 1997, responsible for the quality of care programs, patient education programs, survivor volunteer team, community outreach at a local, regional and national level, webmaster, and patient advocacy.
Mrs. Shockney is a published author on the subject of breast cancer as well as a nationally recognized public speaker on the subject. She has written thirteen books and more than 200 articles on this subject. She serves on the medical advisory board of several national breast cancer organizations, is the ABC News Consultant on breast cancer, and is the co-founder and vice president of a national non-profit organization called “Mothers Supporting Daughters with Breast Cancer.” She serves on 19 medical advisory boards of various national nonprofit breast cancer and cancer organizations.
She is also the recipient of the Global Business Leadership award, numerous community service awards, was the recipient of the Outstanding Women of American Award, in 1997 was awarded the Distinguished Graduate for Lifetime Achievement Award and in 1998 received the National Silver Medal Award from the National Consumer Health Information Center. In 1999 she was the recipient of the National Circle of Life Award and the American Cancer Society’s Voice of Hope Award; In 2001, she was the recipient of the ACS Lane Adams Award for Excellence in Caring; In 2000, she was selected as an “Unsung Hero” for breast cancer by Pharmacia & Upjohn’s 2001 calendar. She also received the 2001 Lane A. Adams Award for Excellence in Caring from the American Cancer Society. Mrs. Lillie Shockney has also received the 2002 Faces of Breast Cancer, ACS, and 2002 Oncology Nursing Society Award for Excellence in Breast Cancer Education awards. In 2003 she was the recipient of the Impact Award from the National Consortium of Breast Centers. She also was the recipient of the Komen Award from the Maryland Affiliate in 2003 as well. In 2004 she was a finalist for the Lance Armstrong Foundation’s Spirit of Survivorship award and also was selected as one of the Top 100 Women in Maryland for her leadership and community service efforts. Mrs. Shockney was selected by the Komen Foundation, nationally, to receive the 2005 Professor of Survivorship Award. In 2006 she was the recipient of the Spirit of Friends Award from Food & Friends and the Avon Foundation., and also received the Patient of Courage Award from the American Plastic Surgery Society. Mrs. Shockney was the recipient of the 2007 Yoplait Breast Cancer Champion award. 2009 ONS Excellence in Survivor Advocacy Award and also in 2009 she received the Maryland Daily Record Healthcare Hero – Nursing Excellence Award. She also became the recipient of the 2009 National Health Network Service Excellence Award. In 2010 she was inducted into the Maryland Women’s Hall of Fame. She also was the recipient of the American Cancer Society’s Pink Links Award. At the end of 2010, she received Amoena Corporation’s national award for Outstanding Contributions to the Breast Care Industry. She also received in December 2010, two national awards from ehealthLeadership for the content on the Breast Center website (patient education award and their highest recognition-the platinum award). In 2011, she was inducted into the Sigma Theta International Nursing Honors Society. She was also in the top 5 nurses who were semi-finalists for the johnson & Johnson Amazing Nurse Contest for 2011.
Beginning in November 2011, her role was expanded to include serving as the Adm Director of Cancer Survivorship for Johns Hopkins Hospital, SKCCC at Hopkins, and Johns Hopkins Medicine. In this role she is facilitating the development and implementation of cancer survivorship programs within each cancer specialty that will best serve the needs of patients, as well as promote clinical research that improves the quality of life and minimize side effects from cancer treatment.
In 2008, the Johns Hopkins Board of Trustees made a decision to appoint her to a chair as a University Distinguished Service Assistant Professor of Breast Cancer. This is the first time in the history of the institution that a hospital nurse has been appointed to a distinguished service designation. In 2009 she was promoted to Associate Professor, JHU School of Medicine, in the depts. of Surgery, Gynecology and Obstetrics. She also holds a joint faculty appointment as Associate Professor in the JHU School of Nursing.
She serves as Ask an Expert for several breast cancer websites including Yahoo.com and the Johns Hopkins Breast Center’s website. She chairs the National Consortium of Breast Centers QI Task Force. She is an active clinical researcher with a focus on quality of life issues for patients and survivors.