Childhood Cancer

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Childhood Cancer Survivors

Body Image, Sexuality, Hormones

Cancer can change not only your physical appearance, but how you view yourself. You may have an obvious difference (amputation) or a more private one (loss of a testicle). You may have scars on your face that can be seen by anyone you meet or scars only seen by loved ones (such as, on your lower abdomen from a laparotomy). Even if you have no physical scars, you may have an altered sense of your own appearance. If you don’t think you are attractive, it may be hard to convince yourself that someone you want to date will be attracted to you. On the other hand, many survivors and those who love them feel that the scars represent life and thus are beautiful.

Healthy adult sexual relationships have psychological, interpersonal, and physical aspects, one or more of which can be affected by treatment for cancer. Most studies of childhood cancer survivors show that overall emotional well-being is good (Kazak, 2010; Brinkman, 2013). However, some areas can become problematic, including sexuality. People with histories of cancer can view the body mostly as a source of health concerns rather than a source for sexual pleasure. Some young men and women have positive dating experiences during or after treatment that help them feel better about their appearance. Others may have other sexuality/sexual function concerns. One recent study showed that most childhood survivors are similar to their non-cancer peers in terms of sexual satisfaction and sexual function (Priobi, 2023). Another study from the Children’s Oncology Group found different results that “survivors reported worse sexual function overall” (Cherven, 2021). More research is needed in this area. Clearly, some survivors face difficulties with sexuality/sexual function after cancer treatment which cause anxiety and stress and negative effect on overall emotional health. Survivors should feel comfortable discussing such sexuality concerns with a trusted member of their healthcare team and seek help.

Losing my hair was probably one of the most heartbreaking things I have ever experienced. I had beautiful dark brown long hair before I lost it to chemo. Going bald was deeply traumatic for me, and I rarely let anyone see me without a wig or beanie on. I felt embarrassed and ugly most times and worried about how sick and bad I looked. It definitely affected my self-confidence and self-esteem. To this day, it is something I struggle with, even now that my hair is growing back.

 

I always hated the way I looked and the scars from all my surgeries. I came to realize the scars meant and showed I won the hard battle. I didn’t truly love them until I met my husband. He pointed out all the things he loved about me and those scars were one of them.

Others especially those who have visible scars or disabilities may have to learn to adjust to some negative reactions from others. Although disability awareness is changing, there are still plenty of people who stare, make rude remarks, or just act uncomfortable around people with disabilities.

Some sexual problems can be caused by hormone imbalances (see Chapter 10, Hormone-producing Glands for details). These are normal late effects from treatment for which help is available. Survivors with hormonal problems should be evaluated by an endocrinologist or obstetrician/gynecologist with experience treating cancer survivors.

How to find help for your questions/concerns

The healthcare provider at your follow-up clinic should discuss any sexual concerns you have. They can also suggest therapists who help individuals or couples understand and deal with sexual problems. The American Association of Sexuality Educators, Counselors, and Therapists (AASECT) can suggest accredited therapists in your area. The website address is https://aasect.org and check resource list at the end of the chapter. Another resource that contains a wealth of information about sexuality after cancer is Leslie Schover’s article, Sexuality and Fertility After Cancer (see reference).

The Livestrong Foundation has information about female and male sexual late effects Website: www.livestrong.org Click on Resource Center, then download the Livestrong Guidebook, Search for late effects.

Telling your cancer story

No one else can decide the right time for you to disclose your cancer history. You might want to find out right away if someone you are interested in is cancer-phobic. On the other hand, you may wish to establish a relationship first so the person already cares for you and will be less likely to respond negatively. Some survivors feel strongly that quick honesty is the best policy, while others feel equally strongly that it’s better to wait awhile. Only you can decide when the time is appropriate to share such an important part of your life.

If you have obvious scarring or a disability resulting from cancer treatment, you might not have a choice of when to share the information. Some survivors enjoy educating the public about disabilities or differences. Others say there are days when they don’t mind explaining and days when they just wish strangers would keep their stares and personal questions to themselves.

Disclosure may be especially problematic for survivors at risk for fertility problems. Having cancer as well as losing the ability to have children can be a crushing blow. It can also undermine relationships if having biological children (rather than adopting) is an important life goal of the partner. Some survivors choose not to get fertility tests to avoid the necessity of dealing with the issue before marriage. Others do not disclose the possibility of infertility due to fear of rejection.

When and how to disclose your cancer history to friends or partners is a purely personal choice. Most survivors opt for sizing up the person and deciding on a case-by-case basis. Often survivors adopt the concentric circle method of sharing information. Those in the innermost circle know the entire history, those farther out are given a little information or only what they need to know, and those on the outer perimeter know nothing. Some survivors find it helpful to practice what they will say when disclosing their cancer history.

Some survivors just pick up their lives where they left off. They find that their cancer history makes no difference in their social lives.

Disclosure of cancer history to potential employers or coworkers is a completely different matter covered in detail in Chapter 4, Navigating the System. Health care providers of adolescent and young adult survivors should initiate discussions regarding the possibilities of infertility, options for fertility preservation, and suggest fertility counseling when appropriate.

I told my husband about my cancer around the 3rd or 4th date, but he already knew because everyone in my town knew. I cried when I told him, and he didn’t understand why. It didn’t change how he felt about me.

 

I don’t openly talk about my cancer story to everyone because I don’t see the point in that. I have told some people in our lab when the topic of cancer comes up, but I don’t bring it up out of the blue.

 

I have no problem talking about my cancer. I talk about cancer so nonchalantly that it shocks people. Once someone asked me if cancer was contagious. My partner now is very supportive of me and everything I have told him about my cancer journey. I don’t tell him everything though. I keep a lot of feelings inside. There are things I haven’t told anyone.

Communication

Communication about cancer history is very important for those who live with the memories and late effects of their treatment. Sometimes survivors have one or two close friends from the hospital with whom they continue to share their thoughts and feelings about the past and their hopes and worries about the future. Joining a support group for survivors is a way to connect with others who have lived through similar experiences. These groups are a great resource for talking over practical matters with people who have traveled the same path. If there is no peer support at your hospital or follow-up clinic, ask a social worker or nurse to connect you with someone in similar circumstances. You could also train to become a counselor at the closest camp for children with cancer. Most of the young adults who are counselors at the camps share a history of cancer and many form lifelong friendships there.

The Internet is a way to contact those who have lived through cancer. There are numerous support groups and websites where survivors can connect, chat, and share stories and advice. The Internet is a great leveler—it doesn’t matter what you look like or whether or not you have any disabilities— you are valued for the thoughts, words, and ideas you choose to share.

Returning to work was extremely difficult for me. Coworkers can sympathize, but they will never truly understand what you went through. It helps to talk to other cancer moms and dads during and after your journey. Get back to your routine slowly and don’t be afraid to reach out to people who understand your journey. Also, don’t be afraid to let people know when you want to talk, don’t want to talk, or want to take a “breather.”

Relationships With FriendsMarriage/Life Partnerships

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