Dr. Don Dizon is our guest on season 2, Episode 2: Sexual Health Needs After Cancer, of the DiepCJourney podcast. What are we discussing? Sexual health needs after cancer, a topic patients often have to bring up themselves to discuss with health care providers. Dr. Dizon tells us why this is the case and empowers patients with information to talk about this with specialists in cancer care regarding sexual health needs after cancer.
Don S. Dizon, MD, FACP, FASCO is Director of the Pelvic Malignancies Program and Founder of the Oncology Sexual Health First Responders Program, Lifespan Cancer Institute. He is the director of medical oncology at Rhode Island Hospital. Be sure to check out the DiepCFoundation YouTube video on the same topic with Dr. Dizon.
What is the Definition of Sexual Health Needs After Cancer?
I begin by recognizing the topic of sexual health is not often spoken about in clinic. However, when I bring the topic of “sex” or “sexual” health up in discussion on my closed Facebook page, DiepCJourney: Breast Reconstruction after Mastectomy, there seems to be a virtual collective sigh of relief. Dr. Dizon defines sexual health for us. In groups he works with he asks members to define sexuality and intimacy. He found that people approach these words in such diverse ways.
Dr. Dizon explains intimacy was never used in the same way as sexuality for women. Intimacy is associated with holding hands, being physically close, being nice to each other; a separate activity. Men would describe intimacy in the context of sex. He calls sexuality after cancer a multiple domain concept. It can include, intimacy, desire, body image, as well as satisfaction. Dr. Dizon describes the stark differences between sex before cancer and after a diagnosis. Sexual health is impacted by surgery, chemotherapy, and radiation. Many people are left with figuring out why they are not the way they were before cancer when it comes to their sexual lives.
Why Aren’t We Talking About Sexual Health After Cancer More?
Dr. Dizon and I discuss some answers to this question. He points out when you are told you have cancer, most people want to know, “Am I going to die of it?” They do not look beyond the hills to what their life might be like after a diagnosis. After the initial shock of the diagnosis, personal life begins to change. Sexual health changes. When it does and it is not discussed, people are left to wonder if there is something wrong with them or if it only experienced by them. The patient is not the only one affected. As Dr. Dizon points out, it is the patient and the person caring for them.
Activities of daily living go on, including sexual health, and patients need guidance. Sexual health is not the same for everyone. As Dr. Don states, “There is not one appropriate way to be sexual after cancer.” In fact, some were not thinking about sexual health before cancer. But it is not something to be assumed that it is the same case after cancer. Everyone deserves the opportunity to be able to ask and talk about the topic of sexual health after cancer.
How Can Physicians Bring Up Sexual Health Needs After Cancer?
Dr. Dizon often talks about potential side effects and toxicity of treatment, chemotherapy, antiestrogen treatments, surgery, and radiation. These directly impact sexual function impacting vaginal health. He finds speaking about it like you would family history. It becomes an effective way to weave it into the conversation in subtle ways. One method he uses is by asking, “Tell me who’s at home with you.” After the patient answers and mentions a name he asks, “Can you describe your relationship with this person?” This often precipitates a conversation that leads to a discussion on sexuality and intimacy.
The clinical approach taught in medical school asks how many sexual partners one has had, or if they have ever been tested for an STD (sexually transmitted disease). He leads the conversation by explaining he will be asking some possible questions about intimacy. Dr. Dizon lets the patient know they can answer according to their comfort level. This allows the door to be open to discussion, which is far better than not bringing it up at all. People will often remember the question was asked, leaving the door open to discussion.
What Part Do Patients Have in the Discussion on Sexuality?
We discuss two things we feel have impact on an open discussion about sexual health for patients. Medicine has many subspecialties these days. Specialists do not always consider the topic of sexual health as part of their armamentarium and what they should address in a consult.
The second element of impact is time constraints for physicians. Dr. Dizon sets aside a full hour devoted to the topic of sexual health. But many physicians simply feel they do not have the time to wrap the conversation into their already tight schedule. For this reason, I suggest patients ask how long their consultation will be and if a portion of it can address their sexual health needs. If it is not possible to discuss it then, or the physician does not feel equipped to discuss the topic, the patient should at least ask for a referral or resource to talk about sexual health needs.
Treatment Options for Sexual Health
Talking about the areas of the body used for sexual function that are affected by cancer is important. Patients should not live with fear, shame, or guilt because the vaginal area is affected by treatment, not because of something they are doing wrong. Dr. Dizon emphasizes the need to treat these areas daily as part of your routine. We moisturize our hands frequently and we should do the same for our vaginal vault area, as it is referred to in our discussion.
The side effect of taking care of the vaginal area daily can improve sexual function so it becomes less painful and more enjoyable. He delineates various pain experiences during the act of sex. Women can experience pain at penetration but he points out this is different than what is experienced with thrust. They are different processes with different solutions. He often performs a pelvic examination to figure out what is happening. Dilator therapy can be used to help with pain.
When the Breast Defines Sexual Health
Removal of the breast due to breast cancer means different things for different people. Some ladies decide to remain flat after breast cancer. Others prefer to have breast reconstruction using an implant or their own tissue. There is no right or wrong choice. It is a personal choice. The hope is all options are presented to patients. But once the decision is made, there are new feelings to get used to in the breast area, often a sexual part of intimacy for many before mastectomy.
Nerve preservation and nerve reconstruction are important topics for patients to ask about. A good deal of sensation can now be preserved at the time of mastectomy, sparing nerves, or reconstructed at the time of DIEP flap, like my own personal experience. Access to surgeons who perform either of these procedures is sometimes an issue for some patients. Traveling is often required. As Dr. Dizon points out, reconstruction if a process not a one-time procedure. All of the above-mentioned factors impact patients and their partners concerning their sexual health needs after cancer.
A Paradigm Shift on the Topic
I leave you with this comment from Dr. Dizon and hope from both of us that the topic of sexual health can be part of the survivorship discussion for cancer patients.
There are ways to look at the issue that takes sex out of sexuality. What we are trying to do is just reinforce sexuality as an inherently natural thing. There is not one way to be sexual. Cancer need not claim our sexual health as well.
Dr. Don S. Dizon MD
Dr. Dizon, thank you so much for joining me on the DiepCJourney podcast for Episode 2: Sexual Health Needs After Cancer. To the best dressed doc on social media, spending no prep time on his fabulous attire and wardrobe at conferences or on social media, it has been an honor to bring light to the topic of sexual health needs after cancer. You can listen to the entirety of the podcast here.