The adage, “You never know what goes on behind closed doors,” relates to life and sexual health. Sexual health is already a complicated issue, involving both emotional and physical aspects. But when you add a colorectal cancer diagnosis, sexual health becomes more complicated.

Megan Ingram Forshey, LCSW, a social worker and program manager for Gilda’s Club Middle Tennessee, works with individuals and couples to help them navigate through not only the emotional aspects of sexual health and cancer, but helps identify other organizations and resources that can offer additional information and support.

“Sexual health is a complex issue because it involves so many variables and is unique for each individual and couple. It can involve changes in body image, emotional, and psychological aspects of re-establishing intimacy after diagnosis, establishing intimacy for the first time following a diagnosis, and really countless other aspects of sexual health.”

— Megan Ingram Forshey, LCSW, a social worker and program manager for Gilda’s Club Middle Tennessee

Factor in the physical component of sexual health and the discomfort, which can often be escalated by different types of treatment. During colorectal cancer treatment, a survivor may become uncomfortable with their body or body image. Finally, people just aren’t comfortable talking about sexual health.

Let’s Talk About Sex.

For more than 18 years with Gilda’s Club Middle Tennessee, Forshey says she has learned from the real experts around this topic — the individuals and couples navigating their cancer diagnosis and treatment. “Over the years, these concerns and questions around sexual health, and establishing and maintaining intimacy continue to come up in the context of support groups and less formal conversations in our community. People talk about what’s helped them; what’s worked; and what hasn’t. And they also share these amazing resources with each other that I can then pass along to someone else that I know could benefit. It’s something people are obviously thinking about a lot, and we always want to provide support and information that helps people feel more empowered and not so alone. It’s the beauty of the collective wisdom of our specific community and the larger cancer community as a whole.”

Communication is key according to Forshey. Communication within an established couple, in a new relationship, and also communication with your medical team during treatment for colorectal cancer.

“Let’s have conversations about these questions and challenges that nobody feels comfortable talking about. We want to make it easier to talk about and have a forum to open up about all these related topics, even if it feels awkward at first. People need to know that they are not alone,” says Forshey. “They are not the only ones wanting more information about sexual health or grieving losses around sexuality, intimacy, and fertility that can come along with a changed body, changed energy levels, and changed roles in relationships.”

A survivor’s treatment team is focused on creating the best strategy for that person’s long-term survival. So, understandably, sexual health may not be the first topic of conversation your medical team is going to prioritize.

However, by 2030 colorectal cancer is projected to become the No. 1 cause of cancer deaths for people ages 20-49, Forshey acknowledges that early-age onset diagnoses brings the sexual health discussion more to the forefront and encompasses the topics of body image, dating and relationships, sexuality, intimacy, and fertility and family planning.

Within relationships, Forshey recommends keeping communication open. “We communicate all the time. Even when we’re not talking, we’re communicating.” Recognize that sexual heath may be uncomfortable to talk about, then communicate about it in whatever way you find works for you. There’s no one right way to do this. It’s going to be a little (or a lot!) fumbly at times, and will likely have some stops and starts and do-overs along the way. Cut yourself some slack and know that it's OK to not say or do things exactly right the first or even the tenth time.

Talking to your medical team is also important. Forshey says, “Medical professionals are humans, too, and sometimes have a hard time approaching the subject with patients. We should be able to talk about our health holistically with our doctors. When physicians are diagnosing you, the first place their very smart brains are going, thankfully, is to the best treatment protocol. They are focused on saving your life. They may not, at that moment, be thinking about your sexual health a little while down the road. But every physician I know would ABSOLUTELY want you to bring that up and ask any questions you have if it’s something you’re concerned about or want to know what to expect in terms of what’s safe and potential impacts from surgery, radiation, chemo, or any other aspect on the cancer continuum.” 

A Changed Relationship: What Happened to my Libido?

Oftentimes, when someone is diagnosed, a couple’s sex life and physical intimacy may grind to a halt. They are shocked and scared not only about the diagnosis, but what the future may hold for them. Their sexual health may be the last thing on their minds. However, once they settle into a diagnosis and treatment schedule, they may begin to fall back into a rhythm. They know how the treatment cycle is going. They know a little more about what to expect in terms of physical comfort and energy level. They may want to get back into the sexual relationship they once had, but they find things have changed.

For instance, they may shift into the roles of caregiver and patient and have a hard time refocusing on being partners and lovers and best friends when life is consumed by cancer and all that comes along with it. Forshey says it is so important to talk about getting back to the loving relationship of being a couple when that feels doable. “It takes being very purposeful about being two people in a relationship. A partnership. Start making a priority of setting aside moments as a couple. Sometimes that may look pretty different than it did before cancer. And that’s OK.” Forshey is quick to note that getting back to intimacy doesn’t necessarily equal getting back to sex, but rather is about turning back to each other as a couple and “This person that I fell in love with.”

Love Prevails.

Stage IV survivor Spencer was diagnosed with colorectal cancer at age 22. While he had been in a relationship for less than a year when he was diagnosed, Spencer is marrying the love of his life in three months.

Spencer acknowledges that sexual health can provide challenges from a medical standpoint in terms of “how to keep sex safe during treatment” to “difficulties of sex due to radiation.”

Spencer and his fiancée stay connected by taking their intimacy outside of the bedroom. Spencer enjoys playing board games and is competitive, while his fiancée doesn’t care if she wins or loses. They enjoy bonding over games. 

Spencer is an excellent cook and his love language is food. He is so appreciative of his fiancee for providing food for him to cook a meal they can enjoy together. 

Starting Over

Part of physical sexual intimacy is figuring each other out again. Forshey says it’s important to consider that when someone is undergoing treatment, their body may physically hurt. A simple hug might be great some days, and some days it might be really uncomfortable. So it’s more than OK to ask what is physically comfortable and reassure your partner that it’s OK to tell you if they’re not comfortable with something. 

It’s important for people to be specific and talk about ways to be intimate, which doesn’t have to include physical touch. Also, make it a point to have these conversations without phone, TV, or other distractions. 

It’s difficult after a colorectal cancer diagnosis to figure out when to start the conversation on sexual health. But it doesn’t have to be. All you need to say is, “I’m missing you, and I want you to know I don’t have any expectation of how this is going to go. But I want us to talk about it. Can we find a little bit of time when we can do that?”

I Can’t Read Your Mind.

It’s impossible to know what your partner is thinking or feeling, which is why communication is so important. You’re not a mind reader. You can’t think for your partner. While it’s thoughtful to try to anticipate your partner’s needs, you also have needs of your own. When you talk about sexual health, you are making sure your needs and your partner’s needs are being met.

If your partner’s body hurts, it’s OK to say, “Can I sit next to you? I miss you near me. Be present with me.”

Single and Dating? Not Everyone Has a Partner.

Stage IV survivor JJ spent his early years enjoying the single life. Then he was diagnosed with colorectal cancer and focused 100% on himself and beating cancer, which he did. After he finished his surgeries and chemo, and thought he beat cancer, he was ready to live. Although he hadn’t been on a date in years, and surgery and chemo made him self-conscious, he started talking with someone and went on a few dates. 

Then his cancer came back, and he needed to start chemo. The first girl that he really liked and was serious about couldn’t handle what he was going through and broke off their relationship. 

The ending of the relationship combined with the news of JJ’s incurable cancer and chemo for life destroyed his confidence over the next months as cancer took over his life and chemo side effects changed so much about him that he lost confidence in himself as a person and in his appearance.

So, how do you take a chance when you’ve been hurt? Forshey says the answer varies from person to person, but she believes survivors can always benefit from connecting with other people who “get it.” There are young adult groups and single people that have traveled the same path as you, while not exactly in your shoes. 

Forshey also notes that in a world for a healthy young adult, dating can be crazy, and when you add a colorectal cancer diagnosis, that can present an even bigger challenge. But she recommends connecting to people who are in your circumstances, and the COVID-19 pandemic made connecting to people from far away more commonplace. 

Additionally worth keeping in mind: People do start relationships and fall in love after being diagnosed and starting treatment. Kim and Jill started dating around seven months after Jill was diagnosed. Jill jokes that “clearly something is wrong with Kim — wanting to date someone with stage IV cancer.” Jill wasn’t looking to get into a relationship at that time, but Kim never gave up. Jill wanted to focus on her treatment and surgeries, she didn’t want to make life complicated, particularly with her stage IV diagnosis and prognosis. Life isn’t perfect, and it has its ups and down, but Jill and Kim haven’t looked back. Jill says rather than worry about the future, she and Kim plan fun trips and things to do, which keeps Jill’s mind off of the scary parts of cancer.

Connecting through a Gilda’s Club or Cancer Support Community or another support community near you or online provides a nice way for young adults to get connected, says Forshey. They provide free social and emotional support for anyone impacted by cancer, including family members and friends. 

Keep on, Keepin’ on.

Couples will find it’s necessary to redefine their relationship and physical intimacy, whether during treatment or well into survivorship.

Forshey says it’s important to have specific conversations about what feels OK with physical intimacy and acknowledge what might look differently after treatment. She emphasizes the importance of not pushing or having a specific timeline for anything, physically or emotionally, if it feels uncomfortable to either party, or if you find yourself stuck on certain unhelpful thoughts or feel like you’re spinning your wheels a little, those can actually be great moments to seek out the help of an objective third party. An individual or couples therapist can be immensely helpful with processing how cancer is impacting your life and relationships. They can also help individuals and couples identify strategies that work best for them to navigate hard conversations and also help reaffirm existing strengths in a safe and supportive environment. 

Forshey recommends making sure there is reassurance along the way. Let your partner know, “I love you. I’m not going anywhere. I want us to stay on the same team.”

You and your partner have been through a lot. Give yourselves and each other grace as you work together to rediscover your relationship and find your way back to things you love and cherish about each other. It may look differently in the bedroom both physically and emotionally, but “love persists.”

Don’t Be Afraid to Ask the Questions.

Forshey recommends you find the person on your medical team who you are most comfortable starting the conversation with. Maybe you don’t see your primary oncologist very often or for very long or and you would feel more comfortable talking to someone else on your team. Maybe it’s a nurse practitioner, infusion nurse, or social worker that you’ve felt a closer connection with. Then talk to that person! Don’t suffer in silence.

Your medical team is there to provide help and guidance in your treatment as a whole person, not just a person with colorectal cancer. Keep in mind, your concerns in the bedroom may vary from diagnosis to chemotherapy to radiation to surgery, and through survivorship. Don’t be shy. Become informed. You don’t deserve a mediocre life because you survived or are surviving colorectal cancer. Everyone deserves a well-lived and well-loved life, and sexual health is included.

To learn more: Check out Fight CRC’s additional sexual health resources from infertility, an IG Live, webinar and podcast. Also, be sure to visit Gilda’s Club Middle Tennessee for free membership, as well as additional valuable information and resources.