In the world of cancer treatment—one that is in constant fluctuation as new treatments regularly emerge—medical professionals have traditionally placed great emphasis on physical diagnosis and prognosis. The questions that doctors address relate almost exclusively to outcome and longevity, and far more rarely to quality of life. Recently, however, a new facet of treatment has begun to emerge: survivorship.
This developing field addresses the realities cancer patients face after they have undergone intensive treatments, including various surgeries and chemotherapy. Survivorship encompasses a wide range of issues relating to rehabilitation, but the medical community has only recently begun to address the relationships of cancer survivors to their sexuality, bodies, and fears for the future.
The Sexuality, Intimacy, and Menopause Clinic at the Smilow Cancer Hospital at Yale-New Haven, which opened in Jan. 2008, is one of the first centers in the country to focus exclusively on rebuilding the lives of women after they have survived cancer. The clinic aims to help female cancer survivors, most of whom battled uteran, ovarian, vulvar, or breast cancer, to reconnect with their bodies, sexuality, and loved ones by addressing problems ranging from loss of sex drive to early onset menopause. The clinic, which currently holds workshops once a month, was co-founded by Elena Ratner, MD, who specializes in gynecologic oncology, and Mary Jane Minkin, MD, whose specialties are obstetrics, gynecology, and reproductive sciences.
Drs. Ratner and Minkin created the clinic in partnership with Dr. Dwain Fehon, PsyD, the chief psychologist of psychiatric services at Yale-New Haven Hospital. Their goal was to create a clinic that employs what they term a “multidisciplinary approach,” integrating the often-divided medical and psychological approaches to cancer treatment. In the past, the fields of psychological treatment and physical treatment remained separate—and even, at times, at odds—from one another. The doctors at the SIMS clinic view this separation as a hindrance to total care. At the monthly clinic, cancer survivors can choose from various treatment options including: acupuncture, reike, physical therapy, individual and couples’ counseling, and both medical and herbal remedies.
In creating the SIMS clinic, the doctors sought to fill what they saw as a void in the traditional approach to cancer treatment. “As cancer doctors we are very aggressive with treatment itself,” Ratner said, “but after it’s over, we often forget that patients are left with certain deficits.”
In addition to doctors’ concerted focus on the solely physical treatment of the cancer, patients themselves also often remain unaware of the post-treatment consequences of their illness. One 58-year old breast cancer survivor (who asked to remain anonymous and to whom this article will refer to as Jane Smith), confirmed that upon hearing her diagnosis, she did not consider the sexual repercussions of the cancer: “Honestly, I don’t know what I expected to feel about my ffsexuality and intimacy. When I heard I had breast cancer I just was panicked about surviving and being there for my children.” She continued, “Once I got through the surgery and knew that I was doing well, only then did I feel the physical and psychological consequences of breast cancer. Not only did I have my breasts removed, but I went right into menopause. There was a period where I felt like I was in a dream and had become an old, sexless eunuch.”
A research study conducted by the University of Chicago Medical Center demonstrated that Smith was not alone in her predicament. Indeed, the study’s results, which sampled from 216 female cancer survivors, showed that 41.6 percent of patients were interested in seeking treatment for issues with their sexuality. Only seven percent had actually received it.
Fehon explained that impetus, at least in part, for creating the clinic: “There are very few cancer centers throughout the country that address issues of sexuality and sexual functioning within the care of oncology patients,” she said. The clinic’s efforts to improve the quality of post-cancer life can largely be divided into three categories: menopause, pain, and rehabilitation.
Fehon described the patient pool for the clinic’s menopause treatment as “largely young women who, as a result of their cancer or surgery or chemotherapy, are now experiencing menopause.” The treatment goes beyond the addressing the physical symptoms of menopause, she said. “There is a host of emotional and psychological issues, relating to not being able to have children anymore, the body changes that go along with that, and the changes in sexual functioning that can occur as a result of menopause,” she said. “This creates a strain not only within the individual, but also within a couple’s relationship.”
Emblematic of the hybrid medical and psychological approach the clinic has adopted, SIMS offers both estrogen treatments to help ease the symptoms of menopause and therapeutic counseling.
The pain most patients at the clinic encounter occurs during sexual intercourse. The clinic addresses both the physical and psychological factors that contribute to this common issue among cancer survivors.
Finally, the clinic seeks to rehabilitate the sex lives of its patients. According to Fehon, the SIMS physicians assist their patients in the process of “rebuilding one’s life after one’s had cancer, reintegrating the changes with one’s self and one’s body, and reestablishing a healthy sense of identity to move forward.”
Smith agreed that the sexual transition after treatment was exceedingly difficult. “After my surgery for breast cancer where I had a mastectomy, I was numb for the first year about my body and sexuality. I forced myself to look at my breast reconstruction, but I felt very self-conscious about anyone else seeing these breasts. I felt like these breasts were only for show, to make my clothes look normal, but they really were not part of me.” Smith added that in addition to her own personal issues with her reconstructive surgery, she also had to contend with the reactions of others. “My husband tried to act like he had no problem but I could see him flinch and look away when I got undressed. I had no interest in sex for quite awhile. I also have to admit that I felt like men no longer would find me attractive if they knew I no longer had ‘real’ breasts.”
The clinical program addresses the treatment of these three principal issues through its hallmark multidisciplinary approach. The potential value of combining approaches to both behavioral and physical matters is only recently beginning to permeate the culture of the medical community. “Over the last decade there has been a greater emphasis on the value of integrating psychological and medical care,” Fehon said. “It provides better care for patients, because it involves the recognition that they have complex needs that involve comprehensive and complex approaches to their treatment. That improves patient outcomes and the satisfaction that patients feel through their medical care: they feel understood.”
In addition to the benefits of a multidisciplinary approach for their patients, the doctors also are hopeful that such an approach can help change the culture of field separation in the medical community at large. “We learn from each other,” Fehon noted. “That also helps in subtle ways change the culture from a traditional medical model that has not felt comfortable with asking about the emotional lives of patients to one where there is more willingness and receptiveness to integrating the psychological with the medical.”
Smith agreed that the traditional approach to cancer treatment simply does not suffice in terms of long-term quality of life. “The oncologists often only have time for traditional medical checkups and don’t assist in ongoing, untraditional health recommendations like herbal treatments for cancer survivors.” she said. “It would be great to have one place where you could go to talk about medical concerns and psychological advice.”
Through their work, the doctors at the SIMS clinic also hope to rewrite the taboos in the medical community toward discussing patients’ relationships with sexuality. “By asking routine questions about sexuality, it becomes the norm,” Ratner said. “I cannot tell you how many women have said that this acknowledgement alone makes a huge difference.”
Four years after its initial opening, the clinic is now seeking to expand. Having hired an advanced-practice nurse practitioner, the cofounders of the clinic hope to reach even more patients. The clinic also hopes to meet more regularly: beginning at twice a month and potentially moving to once a week. According to Minkin, the clinic is also looking to offer fertility preservation for young women diagnosed with cancer, whose chemotherapy may affect their ovaries.
“We’re also very interested in research,” Minkin said. “We are basically doing sexual surveys with everyone coming in to see how our intervention has an impact on sexual satisfaction scales.”
Furthermore, Fehon hopes to extend the range of services to men as well. “The issues of sexuality are not specific to women; they are relevant to men throughout the cancer center as well,” he said. “Sexuality and sexual functioning are a huge concern among patients who have prostate cancer, testicular cancer, especially, but again, it’s not just specific to those cancers that affect organs that we most associate with sexual functioning. Because sexuality, identity, sexual functioning, and quality of life are so tightly connected to emotional functioning in general. So these types of issues can be experienced by anyone with any kind of cancer.”
While not unique, the SIMS clinic at the Smilow Center is one of very few of its kind around the United States, and the cofounders of the clinic hope that its success will lead to the creation of other such programs. Their main concern, however, is to continue offering the “total care” approach that their project touts. “Cancer survivors have the same desires in life that we all do,” Ratner said. “We need to stop treating the cancer and start treating the woman.”