As an oncologist who also runs a sexual health clinic for women treated (or under treatment), I am discovering that my perspective on both issues of cancer treatment (and survival) and life after cancer (and quality of life) is somewhat unique. I am conscious of how difficult it is to bring up cancer therapy and survivorship (let alone sexual health) within the same discussion, yet I have gained a heightened sensitivity of the importance of looking beyond treatment even while we are discussing what to do now. I have benefited greatly from colleagues in the field of sexual health, such as Michael Krychman, at UC Irvine, and Anne Katz, in Canada, both of whom I have been privileged enough to count as colleagues, co-authors, and contemporaries.
I am even more fortunate that one of my friends here in Boston also shares my interest in women’s health. Sandy Falk is a gynecologist and sees cancer survivors for women’s health issues at the Dana Farber Cancer Institute. In our practices, we both see the adverse effects of therapy that patients have to cope with. However, far from the arthralgias of aromatase inhibitors and neuropathy of some of our chemotherapeutic agents (two symptoms which we as oncologists are comfortable discussing), sexual health is often compromised. Take for example a study conducted by Dr. Baumgart and colleagues and published in the journal Menopause on women with breast cancer being treated with an aromatase inhibitor. They reported that as many as 50% of women on an AI have reduced sexual interest, 75% report vaginal dryness, and 57% report orgasmic dysfunction. These figures were significantly higher than the complaints of women without cancer.
In addition to this study, a recent post caught my attention; it was a blog in the New York Times Health and Science section, written by Suleika Jaouad. In this post, she writes about life after leukemia and the consequences of treatment, particularly the effects on her sex life. She critiques the lack of discussion about the changes that occurred in her own body; those that at the age of 24 left her “feeling confused, vulnerable, frustrated— and verifiably unsexy.”
As I considered the first paper above and then Ms. Jaouad’s blog, I found myself wondering if the article on sexual dysfunction from AIs reached any of my peers within oncology. I also wondered whether the authors sought to publish their paper in an oncology-specific journal, yet decided to publish it in one that was not.
The type of complaint that Sandy and I hear over and over is: “I’m done with treatment, but now I can’t have sex. It is too painful and my sexual desire is completely gone. Why didn’t my oncologist warn me about this? Maybe if I had known my partner and I could have worked on this early on. But now, so much time has passed now and my partner and I have lost patience. I’m not sure how to go on with my relationship.”
Those may be extreme examples, and I hope for most oncologists that they are. However, what I do know is that these perceptions do exist—inside and outside of medicine. When the paper on AI treatment was picked up by several sites, I had read some comments posted and was disheartened to see that some of the thoughts above were reflected: “A woman should be lucky to be alive,” one stated; another said, “You can’t have sex if you’re dead.”
I believe most oncologists do not discuss sexual health with their patients and as an oncologist, I understand why. Most clinicians reading this might think (perhaps unconsciously) that the patient is “lucky to be alive.” And of course, she is. And we also know that she probably wouldn’t have had the ability to hear detailed information about sexual health during the diagnosis and treatment planning process—there were much bigger priorities then.
Broadening our perspectives
As oncologists, we must prioritize our objectives for anyone we are treating—our goals are to achieve remission, if not cure—and those discussions are often long and involved. Thanks to the increased awareness of survivorship, we are also adept at discussing medical issues related to our treatment—whether it be alopecia, nausea, vomiting, or the risks of heart failure later in life. However, discussions about effects on sexual health are often left out. There are no easy ways to discuss sexual health, especially in women. After all, sex is not a vital sign that oncologists can easily interpret because sexual health is individually defined. But, for many women, it is an important aspect of the quality of their lives now or it may be in the future. For women without a current partner, sexual issues (in addition to having been treated for cancer) can inhibit them from getting into a new relationship. For some women, it is not an area they are concerned about; but for others, it is. As oncologists, perhaps our biggest problem is assuming that sexual health and intimacy is a “trivial” concern for all.
So how can we as an oncology community do better for patients like Ms. Jaouad? Perhaps we can begin by recognizing the assumptions we might be making about sexual health in women treated for cancer—such as assuming an unmarried woman who has just survived treatment of sarcoma should be grateful to be alive and that nothing else matters (let alone dating), that an older woman with breast cancer won’t mind taking an AI because she couldn’t possibly be interested in sex at her age, or that a woman with metastatic colorectal cancer has bigger issues than sex.
The other assumption is that asking about sexual issues will take too much time. The simplest approach is to ask and refer. We as oncologists can mention sexual issues when the litany of possible adverse effects is reviewed and then ask early in post-treatment follow-up. For those who are interested in discussing these issues, there are those of us in the sexual health community nationally and internationally who, like Sandy, Michael, Anne, and myself, are able and willing to see patients to discuss just these issues. As with other conditions we don’t directly treat, e.g., cardiac effects, we do have the capability to screen and refer.
It reminds me that as oncologists, we must treat our patients with the best care we can deliver, and even after treatment, we must become their advocates. Perhaps it is time that we check our own assumptions about sexual health and exploring those concerns with our own patients. I don’t think we should all become sexual health experts, but we do need to consider the big picture of what happens to our patients after successful treatment; how do we pave the way for them to “get their life back”? If our patients are aware that the door is open, and we are willing to discuss it, it will go a long way in having a positive impact on survivorship care.
And if any oncologists should find themselves at a loss, please refer patients to those of us who have developed a specialty in oncology sexual health. If needed, I’m sure we can help.
Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.
