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Carmen Risi, 40, knew there was a good chance she'd one day sit across from a doctor and hear that she had cancer. Her grandmother died from breast cancer, her mother and aunt were both diagnosed with ovarian cancer, and in 2019 she found out she was positive for the BRCA1 gene — an inherited variant that puts people at a much higher risk of developing certain cancers. As a result, Risi spent two years undergoing routine cancer monitoring — every six months, she'd receive an MRI or a mammogram.
In April of 2021, one such MRI found what Risi would later learn was breast cancer.
In addition to six grueling rounds of chemotherapy, Risi decided to take a hormone therapy shot, in order to preserve her fertility in the hopes of soon growing her family — she started IVF before treatment began and has plans for an embryo transfer once she's done.
One major side effect of the drug? The loss of her sex life as she knew it.
"Lupron has put me into a temporary menopause — complete with hot flashes and a vagina that has completely atrophied," Risi explains. She wasn't exactly given a heads up, either. "I have pages of notes about the side effects these various drugs will have on me that I was handed by my doctor," Risi says. "But there were no notes on how it would affect my sex life. None."
Shari Goldfarb, M.D., an oncologist specializing in breast cancer at Memorial Sloan Kettering Cancer Center, says many women simply don't realize the sexual side effects that come along with various breast cancer treatments. That's why she makes sure to discuss with her patients, upfront, the possibility of menopausal symptoms and sexual challenges, such as vaginal dryness and decreased libido. She also encourages her patients to be proactive by using non-hormonal moisturizers, lube, vaginal dilators, and vibrators to make them feel more comfortable about having penetrative sex when they're ready.
But the emotional side effects can be just as jarring. The temporary menopause combined with the loss of libido thrust Risi into a deep depression that she says left her thinking, "'What's wrong with me?'"
Madeline Cooper, LCSW, a psychotherapist and certified sex therapist, says it's common for cancer patients to experience depression — as well as other mental health struggles — as a result of receiving a cancer diagnosis. "The first thing I tell my clients is that it is normal to go through a grief and mourning period," Cooper tells InStyle. Being slapped with a breast cancer diagnosis that, for some, is intimately wrapped up in one's identity as a woman, can affect so many parts of her life: a change in her body, expression of sensuality, sexual desire, pleasure, body image, the list goes on. "You might need to adapt to a new sexual style with your partner, and this might feel like a loss."
Of course, not everyone already has a committed romantic partner in their life when they receive their cancer diagnosis and undergo treatment. Chiara Riga was a single 27-year-old when she was told last year that she had stage 4, metastatic breast cancer. While her healthcare providers believe she has between 10 to 15 years to live, her diagnosis is terminal, which, needless to say, makes dating — and sex — particularly fraught.
"I'm casually using dating apps, but there are so many different layers to what makes it a struggle for me," Riga tells InStyle. "There's the first layer, which is zero libido. Kids are off the table for me, too — certainly biological kids, but there's also the ethics of adopting a child knowing that my disease is terminal. Then there's the issue of 'when do you disclose?' and 'how do I disclose?' I want to date in order to be able to escape this dark reality I'm living in."
Part of Riga's treatment, which she will undergo until the end of her life, suppresses her ovaries and estrogen, because her cancer is hormone-fed. This means she is in full-blown menopause, which has essentially eradicated her desire to have sex. And while Riga says she actually doesn't miss it, the want and ability to have sex would make her dating life much simpler and a hell of a lot more fun. Breast cancer, in a sense, has eliminated frivolous sexual encounters, by shifting the focus from sexual pleasure to long-term support through partnership.
"Who in their late twenties or early thirties is looking for 'just a partner'? I think [wanting to have sex] would make dating much easier for me," she explains. "And I do think for the right person, the right relationship really, I'd try to figure something out. I just haven't found the right person for that yet."
Even for those who do have a long-term partner — and a libido — to navigate the process with, redefining what sex looks like after breast cancer takes effort. For Risi, that meant finding other ways to experience orgasm (ahem, clitoral stimulation) with her partner once penetrative sex became too painful during chemotherapy. And after her forthcoming double mastectomy, Risi knows she'll have to contend with not just the loss of her breasts, but the sexual pleasure they bring her. "I don't want to lose my breasts. I don't want to lose feeling. My breasts [stimulate me sexually], so to lose that forever is incredibly daunting," she says, despite knowing it's the best decision based on her risk factors.
According to Cooper, this reaction is common. Cancer treatments can often be associated with many types of "loss" — be it loss of libido, breasts, hair, a sense of sexiness, comfort in one's body, identity even — and that loss, even if some are temporary, can be overwhelming at best.
"Breasts and hair can [contribute to] a woman feeling sexy and confident about her body, and this might shift with the loss of either," she explains. "These changes could cause one's body image to become a source of feeling turned off rather than turning herself on, and this can reduce sexual desire overall."
Learning to love her body and reconnect with her sexual desire is something that Mary Purdie, 38, was already contending with when she was hit with the whiplash of breast cancer in January of 2018. In fact, it was during a new morning ritual — looking at her naked body in the mirror — that she first noticed a lump in her breast. "I was trying to appreciate my body, even though it was causing me so much pain," Purdie tells InStyle.
After she was diagnosed with stage 1A invasive ductal carcinoma, she underwent a lumpectomy, radiation, and multiple rounds of chemotherapy. She was also put on a long-term hormone-blocking treatment called tamoxifen — a daily oral medication she has to take for at least five years. And while she was able to keep her breasts, and therefore felt more physically "whole" — her libido went out the window.
"Our sex life was already kind of on shaky ground after the last miscarriage, because my body had gone through so much and most of the sex that we were having in the past year or two was strictly for the sake of conceiving and not really for pleasure in any sort of organic way — it was scheduled," Purdie explains. "So going from that to cancer treatment, it was like, 'Well, how do we even get back to the honeymoon phase?'"
For Purdie, it was by allowing her husband (of three and a half years at the time) to take care of her. "I was generally the person who was cooking and cleaning. I took care of our house. But that all changed when I was going through chemo — he did everything all of a sudden," she says. "And those acts of service helped to build intimacy. I could just lay there and be miserable and I knew he was going to take care of me, and that was such a huge showing of his love."
According to Dr. Goldfarb, experiencing this kind of non-sexual, emotional support from a partner tends to increase the amount of intimacy a patient feels during and after treatment — and can indirectly benefit their sex life too. "Assurances like 'I love you unconditionally' and 'I'm in this with you — I am here to support you through this' are really important, because patients often worry that a cancer diagnosis will [damage] their relationships," Dr. Goldfarb adds. "I have seen relationships get closer in times of turmoil and illness when significant others are supportive."
She says that in addition to simply being there — reminding her to take her medications, sitting with her through chemotherapy treatments, cooking, cleaning — her husband's patience and attention to the little things also helped, not just in making her feel closer to him but making her feel more comfortable in her body and, eventually, being sexual. He deferred to her in bed — he let her take the lead.
"In the evenings it would often turn into a moment together that, even if it was brief, was a chance for us to be physically intimate," she adds. "It felt good to tap into that sense of normalcy that we had before cancer and before miscarriages."
Risi is also determined to maintain her sex life — no matter what changes to her body breast cancer may bring. She grew up in what she describes as a conservative Christian community where women were "taught to be modest" and that "sexuality wasn't something you should even think about until you're married." Risi got married at 28, and says that, as a result, she spent years muting her own sexuality.
"I'm so mad that I lost a part of my sexuality to religion in my youth, and I'm losing sexual function and desire to cancer. It's maddening," she adds. "But I know my husband will still want to love and touch on whatever my new breasts are, even if I don't have a specific feeling there. And I think I will enjoy that, because there's intimacy there, even if there isn't sensation."
Jessica Zucker is a Los Angeles-based psychologist specializing in reproductive and maternal mental health and the creator of the #IHadaMiscarriage campaign. Her first book is now available I HAD A MISCARRIAGE: A Memoir, a Movement (Feminist Press + Penguin Random House Audio).