I have written a number of books for consumers and professionals about cancer and sexuality as well as cancer survivorship. Writing is one of my greatest pleasures and each and every one of these books has genuinely been a labor of love, with a smidgen of blood and sweat thrown in, as well as the death of many trees. Some of my books have received awards and I have had wonderful feedback from nurses and other oncology care providers over the years. My first book, Breaking the Silence on Cancer and Sexuality: A Handbook for Health Care Providers, now in its 2nd edition, was followed by two books for people with cancer. One of these, Woman Cancer Sex, has also been revised recently but I have had little feedback from women with cancer who may have bought it, other than what is posted in the Amazon reviews. I tend to think about this like the saying “If a tree falls in a forest…”
I have been following a patient for some time during the COVID pandemic; we see each other on video every 2 weeks. The patient is a 50-something woman who was treated for breast cancer 2 years ago. She had a mastectomy as well as chemotherapy and about a year ago was referred to me by her oncologist. She wanted to talk about sex after breast cancer and told me during our first appointment that she was very conservative, both in her religious beliefs and also in her attitudes to sex. This did not faze me at all; over the past 2 decades I have seen many patients with all kinds of backgrounds and values. Of course she had looked me up on the internet and within a couple of months of our biweekly appointments, she bought a copy of Woman Cancer Sex. Over the past 4 months she has read the book, and at every appointment she has talked to me about what she has read.
There were chapters that made her cry and I cried when I wrote them too! One of the chapters tells the story of a fictional woman with metastatic breast cancer who is receiving hospice care at home. The hospice nurse provides care not just for the woman but for her wife too. Her advice to the couple allows them to spend their last few days together, lying together on the hospital bed that has been placed in their living room. They spend hours like this, until only one of them is still breathing. I really struggled writing this chapter and it took me a while to complete. I had to stop writing numerous times because just thinking about the couple made me cry and it’s not easy typing when my view of the monitor is blurry.
But it was not this chapter that made my patient cry! Rather it was the chapters that described the struggles many couples go through in communicating their feelings, and not just about sex. The central core of the book is about the need for communication between patients and their partner as well as between health care providers and patients. Since I first published Breaking the Silence on Cancer and Sexuality: A Handbook for Health Care Providers, I have seen a willingness among oncology care providers, particularly nurses, to start a conversation with their patients about sexuality after cancer. This is gratifying even if I have only played a small part in helping nurses to find the words to talk about this. There remains some “passing of the buck” regarding who should have the conversation, with some oncologists seeing this as the responsibility of nurses while some nurses see this as the social worker’s duty. I, along with patients who have been asked about this, just want someone to raise the topic!
It seems obvious to me that if we talk about the side effects of treatment to patients, we should talk about all the side effects, including sexual changes. A systematic review suggests that twice as many men are told about sexual changes as women (60% vs. 28%)1; this may reflect the obvious changes for men with prostate cancer, but women with breast or gynecologic cancer are at high risk for sexual problems after treatment. What else is driving this difference?
There are many reasons that clinicians cite for not talking about sexuality with patients. These include lack of time and lack of knowledge. We make time for discussions about end-of-life care and financial matters but not about sexuality. And yes, most medical and nursing programs offer little in the way of education about sexuality, but there are many ways to educate ourselves about sexuality and cancer. But what patients want most is to be listened to, to have their concerns validated and to be treated with empathy and a referral to a specialist if their problem is beyond the knowledge or scope of practice of the clinician. In order to listen, validate, and empathize, we need to ask the question.
1.Reese JB, Bober SL, Daly MB. Talking about women's sexual health after cancer: Why is it so hard to move the needle? Cancer. 2017;123:4757-63. DOI: 10.1002/cncr.31084.