This month we talk with Cindy Miller, BSN, RN, CN-BN, who discusses sexual function and health for both current cancer patients and survivors. She offers resources for those needing support with their sexual health during or after cancer treatment.
Cindy Miller has been a Registered Nurse for nearly 30 years, with the past 16 years at Kadlec Tri-Cities Cancer Center in Kennewick, WA. She has provided education & outreach to the community, later taking on the role of Oncology Nurse Navigator and most recently moving into the role of Survivorship Navigator. Cindy has worked primarily with breast cancer patients. She has learned so much from these women (and men) about their special needs during and after cancer treatment. The growing need for sexual health education and the lack of resources has become very evident and Cindy strives to make a difference. She believes in supporting the whole person, including physical and emotional well-being.
SHWI: Please share more about your work as a CN-BN (Nurse Navigator) for those who are unfamiliar with this type of provider role. What let you in your career as a RN (Registered Nurse) to focus on women's sexual health, and specifically, cancer survivorship?
The role of Oncology Nurse Navigator (ONN) is to support patients and their families overcome barriers to receiving timely, appropriate care throughout the cancer journey (diagnosis through survivorship). Ideally, each person diagnosed with cancer should have a team, including a Nurse Navigator. The earlier this connection is made, the better. The ONN can ensure barriers like transportation and financial concerns are addressed and appointments are made in a timely manner, etc. If a facility or institution is large enough to have an area of specialty, it will most likely be in breast cancer. This is because breast cancer is the most common cancer in women in the United States, except for skin cancers (about 30% of all new female cancers each year). I became the facility’s first certified Breast Navigator to help with the complex needs in this population.
Sexual health has become an area of increasing interest, not only because of my work in oncology, but becoming a menopausal woman myself made me aware of how little is shared with women about their bodies and the aging process. My role in Survivorship is based on the needs of the organization and my desire to continue to assist patients beyond treatment. My job includes creating a “Survivorship Care Plan” to provide not only a useful summary of treatment and plan going forward, but to address residual physical and emotional symptoms and side effects. Sexuality and intimacy, whatever that looks like to an individual, is a crucial part of life. We are all sexual beings whether we engage in sexual activity or not. How could I ethically address the future of a cancer survivor without making this a priority?
SHWI: What would you recommend for couples to address prior to one partner starting cancer treatment?
If possible, a significant other should go to appointments, especially those with specialists discussing the diagnosis, staging, side effects and treatment options. Anxiety often runs high, and people do not retain much of what is discussed. It’s good to have “another set of ears” to help remember what was said and take notes. Make a list of questions prior to your appointment with a specialist, review it after the appointment and follow up with questions prior to making decisions on treatment. Concerns about fertility preservation should be discussed prior to treatment.
Sexual functioning and desire are likely to change during, and possibly after, treatment. When one partner has cancer, both parties are affected. In my experience, offering the opportunity to discuss sexual health issues with a couple opens a dialogue that allows both partners to ask questions and continue their conversation outside of the clinic setting to help their relationship. Offering some sort of brochure on intimacy and sexuality to take home may make it easier to broach the topic. Addressing these issues early can indicate to your partner that they are valued, and it is important to you to work on your relationship at one of the most difficult times of your lives.
Several years ago, our facility was fortunate to host a couples seminar addressing sexual side effects of cancer treatment. It really stuck with me when one of the husbands said he wished this opportunity had been offered prior to his wife’s treatment for breast cancer. He had felt isolated and didn’t know how to best support his wife. Later, he offered to meet with other husbands who reached out with questions. Another young woman attended support group and said of her husband, “He doesn’t find me desirable anymore,” as she cried. Fortunately, she accepted the assignment to have an open conversation with her husband only to find that he was very much in love with her and was trying to be respectful by not make demands of her while she was going through treatment. Open communication is critical and resolved their issue. There may be restrictions or limitations on sexual activity during cancer treatment. Address your questions and concerns early on. This will allow an opportunity to gain support throughout treatment and figure out where you need to shore up your team and resources. Reach out to your Nurse Navigator for resources and join an appropriate support group.
SHWI: What do you wish healthcare providers and oncologists discussed with patients before and after they complete their treatment?
Sexual side effects, if brought up, are often mentioned for a few moments in discussing a list of potential side effects related to medication. Most people are too embarrassed to openly discuss their sexuality – desires and needs. Unfortunately, that includes many providers. In all fairness, this topic may require a significant amount of time to address properly. Therefore, I encourage providers to have a member of their team designated for this role. It’s too important to minimize. Treatment (i.e. surgery, chemotherapy, radiation and/or endocrine therapy) may have a significant impact on cancer survivors in a number of ways. The largest population I work with are breast cancer survivors, the majority of which are placed on medication to suppress estrogen. In my experience, the average woman is seldom educated about what to expect in menopause, not to mention the added issues with a cancer diagnosis and treatment. When taking away hormone replacement therapy and/or placing patients on medication that results in physical and emotional side effects, we have a responsibility to provide that education and offer support.
It is also important to recognize some issues with sexual dysfunction may be pre-existing. These may be physical, psychological, medication-related, influenced by culture or interpersonal relationships. It is like many other things in that it would be helpful to have a discussion up front to determine a baseline and need for help. It’s not unusual to have an in-depth conversation with someone who is dissatisfied with their “love life” after cancer treatment only to find the area(s) of concern were there long before the cancer diagnosis. That doesn’t mean there isn’t still help available.
Loss of breast(s), uterus, ovaries, dealing with an ostomy and other significant physical changes can have a serious emotional impact. Even something like a new scar or change in breast shape can emotionally impact the survivor. Questions like “What symptoms can I expect and what can I do to address them?”, “Who can I talk to?”, “Where can I get products to help?”, etc. are on the minds of these women. Many women express gratitude that someone is willing to openly talk to them about these sensitive topics. The Navigation Team can assist, help make referrals to a support group, and, if needed, to a sexual health or mental health providers.
SHWI: What are your recommendations to rehabilitate the vagina and improve sexual health function? How should vaginal health be addressed after women finish cancer treatment?
In my opinion, vaginal health should be addressed regardless of age, whether cancer treatment is involved or not. Women often share that they are not sexually active and do not intend for that to change; therefore, this topic does not apply to them. I totally disagree! Vaginal health is important regardless of age or the desire to have sexual intercourse. In fact, many specialists recommend proper pelvic floor exercises daily for the rest of our lives to improve overall health, including sexual function and continence.
Menopause may bring with it atrophy of the vulva and vagina or vaginal dryness (resulting in pain, itching and/or pain during intercourse), etc. Anyone experiencing new symptoms (i.e. pain, burning, lump, growing skin discoloration or vaginal discharge, etc.), should check with their gynecologist, or other appropriate provider, to ensure there are not more serious underlying issues. If you are simply told that your symptoms are “a normal part of aging” and nothing can be done about it, consider seeking the opinion of another practitioner.
Whether having a partner or not, individuals may still experience sexual desire. There are options. Vibrators, dilators and other toys can be combined with lubricants (a topic in itself) to increased blood flow, promote vaginal health, and provide pleasure. Other treatment options, available at specialty clinics, are believed to improve blood flow and satisfaction but most are not covered by insurance and can be expensive. Consult your gynecologist for more information.
We offer education and samples of vaginal moisturizers and lubricants. Individuals are often more comfortable as they have resources to “try before you buy” and permission to care for “that part” of their body. Changes in hormone levels, physical changes due to surgical procedures or treatment, history of abuse and other reasons may mean options are limited or there could be a decrease in arousal or sexual desire. Remember, intimacy means more than just having sexual intercourse. There are professionals who specialize in these issues.
Sexual rehabilitation for should be addressed by a radiation oncologist prior to pelvic radiation. The use of a vaginal dilator following treatment is an established practice. Upon completion of treatment, our clinic provides dilators (in multiple sizes) and written instructions with recommended use. The goal of dilator use is to prevent vaginal tightening, shortening and adhesions. Controlled use of a dilator allows the individual to determine timing, intensity and frequency. This can provide increased quality of life by resulting in less discomfort during vaginal examinations or to assess when the individual is ready to resume sexual activity with less discomfort and anxiety.
SHWI: September is Ovarian Cancer Awareness Month. You mostly work with breast cancer survivors, however, what are your recommendations to women to screen or check for ovarian cancer?
As in the case of my mother, who recently passed from ovarian cancer, there are often misunderstandings regarding who can get ovarian cancer, the symptoms of the disease, age and stage of life. Mom was 82 years old and said, “But I just have one shriveled up ovary,” and yet she was gone in a few short weeks. Ovarian cancer is often diagnosed in a late stage since the symptoms are often passed off as “nothing to be concerned about”. Symptoms may include: fatigue, bloating, lack of appetite (due to abdominal enlargement) or feeling full quickly, change in bowel habits (diarrhea or constipation), abnormal bleeding, weight gain or loss, swelling of the legs, etc. Early in my career at the Cancer Center, I spoke with a woman in her 80s and asked how she knew she had ovarian cancer. Her answer, “I’ve been the same size for many years and all of a sudden my pants were tight.” There isn’t a standard screening for ovarian cancer. Get a complete pelvic examination (checking ovaries and uterus for size, shape, etc.) and speak with your provider about ordering tests such as a transvaginal ultrasound or CA-125 blood test, if appropriate. You may remember years ago when Gilda Radner developed ovarian cancer and encouraged women to get a CA-125 test. Unfortunately, this is not a basic screening test. It is only used for monitoring treatment, recurrence, or in screening for women at high risk for ovarian cancer. Women need to be educated and strive to be an advocate for their own health.