Sheila* is a vibrant woman in her late 50s with stage II gastric cancer. She is slight but energetic; her chart states that she has lost a considerable amount of weight since her diagnosis and treatment. She’s had chemotherapy and surgery and is now on continuous chemotherapy for 63 days and 63 nights.

She came to see me to ask about what precautions she needed to take when having sex with her husband of 32 years. She had asked the nursing staff at the facility where she is being treated, but was not satisfied with their response, so she asked for a referral to me. Coincidentally, I was writing a chapter on sexuality and chemotherapy when I got her call, so I had been immersed in the very little literature on the topic for the preceding week.

We started our time together with me listening to her story. This is always the favorite part of my work with patients; I learn so much about them as people and this is vital to our work together. Sheila talked about her love for her husband and how they have grown together as a couple over the years. She described the challenges of their 20s and 30s, when they were parenting young children, and then the joys of their 40s and 50s, as they rediscovered each other. I nodded as she talked, having heard similar stories from other patients.

“So what is safe for us to do?” she asked me.

I started by asking her what she had been told as part of her preparation for chemotherapy. She had not been told anything. She’d asked her oncologist and he told her that most patients on chemotherapy are not interested in sex. She had also not been able to find anything on the internet.

I then asked her what she understood by “sex.” This may sound like a simple or even stupid question, but in the years that I have been doing this work, I have learned that sex has different meanings for different people. For some, it is intercourse and only that. For others, it means kissing and touching, and for some, it means a wide range of activities including oral and anal penetration. It is important for me to understand what the patient means by the word and what their sexual repertoire encompasses so that I can provide appropriate and accurate information. Just as talking about sexual activity is uncomfortable for health care providers, it can also be awkward for patients, and so I explain that I need to know what they mean by the word and what they do so that I can help them.

I explained to Sheila that we do not have clear guidance on what is safe during chemotherapy and that much of what we advise patients is based on our best guesses as to the potential for excretion of chemotherapy metabolites in semen and vaginal fluids. There is a single study of the presence of a thalidomide analog (lenalidomide) in semen that found that the drug was undetectable 72 hours after ingestion.¹ We usually advise the use of barrier methods (condoms and dental dams) for penetrative and oral sex to prevent pregnancy and infection in patients at risk, as well as to protect the partner of the patient from any chemotherapy metabolites.² Kelvin suggests that patients use barrier methods of protection on the day of treatment and for a week thereafter.²

So where does this advice leave patients like Sheila, who are on continuous chemotherapy? What about those on oral agents? The evidence is lacking. While it could be argued that to err on the side of caution is better than putting patients and their partners at risk, perhaps we are overreacting, or even scaring patients and/or their partners. Risk is a difficult concept to understand at the best of times, and when the evidence behind the risk is scarce or non-existent, risk is even more difficult to assess. I believe that it is our responsibility to inform our patients to the best of our ability, taking into consideration their health literacy and ability to assimilate the often complex information we provide. An informed patient will make a decision that is right for them in the context of their life, and it is not for us as providers to order or expect total compliance.

When I asked Sheila what she thought about the information I had given her, a synthesis of the paragraph above, she said that she would need to both think about what I had told her and discuss this with her husband. Ultimately, he was the one potentially at risk. Or was he? She told me that what she missed most, and what she had not done for the many months of her treatment, was to kiss her husband with an open mouth, and she missed this “deep kissing” more than the sex. After our talk, she thought that perhaps the risk to him from this was low and something they could live with, all things considered.

*Name and identifying details changed for patient privacy.

References

1. Chen N, Lau H, Choudhury S, et al. Distribution of lenalidomide into semen of healthy men after multiple oral doses. J Clin Pharmacol. 2010;50:767-774.
2. Kelvin JF, Steed R, Jarrett J. Discussing safe sexual practices during cancer treatment. Clin J Oncol Nurs. 2014;18:449-453.