Relationships, Intimacy, & Fertility
Relationships
Survivors of childhood cancer often note feeling isolated from their peers, but young adults need meaningful connections with peers to thrive.
As a cancer survivor, you may have discovered that your personal need to find and create meaning in life is enhanced.
It’s a good idea to periodically evaluate your relationships, both platonic and romantic. Are you open and honest about your cancer experience with your friends? Do you have people you can lean on when you’re struggling with physical or emotional late effects?
Studies have shown that childhood cancer survivors are less likely to marry compared to the general population. Of course, remaining unmarried throughout adulthood is a perfectly acceptable choice for someone to make. But the statistical difference suggests that there are other factors at work besides a lifestyle choice.
The hard truth is that some childhood cancer survivors have to work much harder than their peers to overcome barriers of intimacy, sexuality, and self-esteem, often as a result of long-term effects from their disease or treatment.
As with all aspects of your survivorship, remember that there are tools and resources out there to help you overcome some of these challenges.
Single? Fear of rejection or failure often prevents cancer survivors from re-entering the dating world after treatment. Remember that everyone - even your healthy peers - face the same fear every time they ask someone out for coffee. Be open to meeting new people and to forming new relationships. But be sure you’re ready to handle rejection if it does come your way. If your self-esteem is suffering, work on that first - otherwise, you might be in for a big set-back on your road to emotional well-being.
A suggested exercise is imagining in your mind the absolute worst thing that you could hear from someone that you might be interested in dating when you tell them about your cancer. Now, figure out how you would cope with hearing that. Could you handle it maturely, with confidence and conviction in your self-worth? If so, then you’re ready to step into the dating world.
“When do I have the cancer talk?” This is the biggest question cancer survivors have when they are meeting new people and considering a relationship with someone who doesn’t know about their cancer experience. There’s no single right answer. You don’t owe anyone your story, especially people you don’t yet know well or trust. But if you wait too long to reveal your cancer history, a new partner might feel like you’ve been dishonest. Some people want to get it out in the open on the first date so all their cards are on the table. Whenever you choose to have the talk, try to make sure you have privacy and adequate time to talk without interruptions. Your partner will likely have a lot of questions. You should ask questions back. It should be a two-way conversation and a time for both of you to learn a lot about each other. Let your new partner know that if they need some time to process the news, you can resume the conversation again in a few days.
Intimacy
Your cancer and treatment may have had an impact on your physical appearance. Long-term physical effects such as weight gain or loss or surgical scars may impact your overall self-esteem and make you uncomfortable in a sexual relationship.
The key to overcoming confused feelings about being intimate is to be honest with both your partner and your doctor.
Discussing reproductive issues and sexual concerns can be embarrassing and scary. However, the benefits of an open discussion far outweigh keeping these concerns to yourself.
Discussing these issues and working to feel good about yourself will help you have healthier and happier relationships.
Sex Drive: Your ability and desire to perform sexually can be affected by both physical or psychologically challenges. It’s important to pinpoint the cause-and-effects of your unique situation.
Emotionally, you may be suffering from depression, guilt, fear, or embarrassment. Sometimes, low self-esteem leads people to engage in sex less frequently, feel more anxious about sex, have difficulty becoming aroused or deriving pleasure from sex, avoid sex, or engage in it too freely or dangerously.
Physically, hormonal treatment during or after cancer may have had side effects that impact your sex drive, including vaginal dryness or a decrease in testosterone. Sometimes, survivors who experienced surgery or radiation in the pelvic area may actually experience physical pain during intercourse. Men may have more trouble becoming aroused and/or reaching orgasm.
You may benefit from seeking out medical and/or psychological assistance, if late effects like these are lingering well after treatment ends. There may be medical interventions that can help, and a professional counselor can help you sort through your feelings about sex and provide guidance in helping you to reach a more healthy level of intimacy with your partner.
Possible Solutions:
If you are suffering from fatigue, talk to your partner about sexual positions that will require less energy or strain. Respect your limits.
If you are suffering from pain during intercourse, it is important to talk to both your doctor and your partner about how and where it hurts.
There are medications available for both men and women to increase sex drive, increase vaginal lubrication or the ability to maintain an erection, and increase the ability to achieve orgasm. Talk to your doctor about what options are available to you.
If you’re embarrassed about your physical appearance, you should work with your partner and a professional to increase your comfort level with your body. There may be small things that make you more comfortable being intimate, like turning the lights down or keeping a shirt on, but it’s important to address the underlying issues for the sake of your long-term sexual and emotional health.
Remember that your masculinity or femininity is not determined by the presence of your testicles, your breasts, or your sex drive. You’ve spent a lifetime becoming the man or woman that you are - cancer can’t take that away.
Above all, it is important to be well-informed about possible sexual and/or fertility problems - and to be willing to talk about these concerns with your partner and your health team.
Fertility
Before getting into infertility, let’s talk briefly about fertility.
If you are already pregnant, ask your long-term follow-up team if you face risks that non-survivors don’t — if so, consider enlisting a high-risk obstetrician. In particular, female survivors who received pelvic radiation are at risk of complications including premature labor or a low birth-weight baby.
The good news is that modern medicine continues to make advances, both in treating infertility and in minimizing the late effects of cancer treatment related to fertility.
If you are still in the process of considering whether biological parenting is right for you, one of the biggest questions you might have is whether your childhood cancer is genetic.
In most cases, the offspring of childhood cancer survivors are not at any increased risk. But if the risk of cancer to your future children would impact your choices about becoming pregnant, you might want to consider genetic testing and/or talk to a genetic counselor. Only your medical team can provide the best information about your specific case and risk factors.
Source: AACR Cancer Progress Report 2022
Fertility is a sensitive and emotional topic. It’s especially difficult for cancer survivors, because some cancer treatments cause fertility problems in both men and women. Oftentimes, especially in the case of a young child with cancer, the family’s panic to start life-saving treatment as quickly as possible overrides questions about future fertility. It isn’t until many years later that a lot of childhood cancer survivors come face-to-face with the effect their treatment had on their fertility.
If you are reading this and you (or your child) haven’t yet undergone treatment, or are early in treatment, make sure you do thorough research and discuss your options for fertility preservation with your medical team. Read more from KIdsHealth by Nemours.
About Infertility: Infertility is the inability to start or maintain a pregnancy. The American Society of Reproductive Medicine defines infertility as the inability to conceive after one year of unprotected intercourse in women under the age of 35. Some cancer treatments, including radiation to the testes or ovaries or treatment with alkylator drugs, may cause infertility, may increase the difficulty of conception, or may make maintaining a pregnancy more difficult. Brain tumor patients who received treatment to the hypothalamus and pituitary gland may impact sperm and egg development - but each case is unique and should be discussed with your medical team.
Other factors that may affect a childhood cancer survivor’s fertility include:
Type and location of cancer (most risky: direct radiation to the testes or ovaries);
Age and developmental age at time of diagnosis;
Types and dosages of drugs (most risky: high doses of alkylating agents, high doses of radiation, or total body irradiation).
If you are concerned about infertility, talk with your doctor about the type of cancer and treatment you had as a child. Some treatments that were previously thought to cause infertility have actually not affected fertility. This information may affect your decisions regarding birth control - but you should never assume that the treatment you received is a substitute for contraception. You may also want to consult an infertility specialist.
Your Options
Fertility Treatment: If you are infertile, and you’d like to have a child, many options are available, including fertility cycle enhancement, donor insemination, donor eggs, testicular sperm extraction, in-vitro fertilization, and surrogacy or gestational carriage. You’ll need to discuss with your health care team which of these might be viable options for you to pursue.
Adoption: Many infertile couples choose adoption rather than infertility treatments, or they decide to adopt after infertility treatments have failed. If you are considering adoption, you have a variety of choices, including domestic parental placement, domestic waiting child/foster care adoption, or international adoptions. Each has its own benefits and risks. Several factors to consider prior to adoption are cost, ethnic, heritage, age of child you wish to adopt, whether you’re prepared to handle a child who has been abused or neglected, and whether you can travel at a moment’s notice to complete the process. It’s important to know up-front that the adoptive process can be very lengthy and sometimes very expensive.
Remain Childless: Some infertile couples choose to remain childless. This can be a rewarding choice if you have accepted infertility and chosen other ways to fulfill your desires to have children in your life. For example, you might volunteer at a school or camp, or you can take an active role in the lives of children that you are close to - nieces, nephews, and children of friends.
The Psychological Impact of Fertility
The overwhelming medical decisions and uncertainties associated with infertility can create one of the most distressing life crises facing a couple or individual. The long-term inability to conceive a child can evoke significant feelings of loss. If you find yourself feeling anxious, depressed, out of control or isolated, you are not alone. However, if those feelings persist, seek professional help.
There are certain times during infertility treatments when discussion with a mental health care professional about infertility options and your feelings can both clarify and aid in your decision making. For example, consultation with a mental health care professional may be helpful to you and your partner if you are:
At a treatment crossroad;
Deciding between alternative treatment possibilities;
Exploring other family building options;
Considering third-party assistance; or
Having difficulty communicating with each other other or if you have different ideas about directions to take.
Fertility Resources
Oncofertility Consortium Web site (Hotline: 866-708-FERT / Patient Navigator)
Use the online Clinic/Center Finder to find the fertility preservation center closest to you
Fertility News
Updated Guidance from AAP (March 2020)
The American Academy of Pediatrics issued updated guidance for physicians related to fertility preservation in children with cancer.
Perinatal risks in female cancer survivors (August 2018)
This 2018 study found that female childhood cancer survivors have an increased risk of premature delivery and postpartum haemorrhage, but their offspring are not at increased risk for low birth weight or congenital abnormalities.
Pregnancy and Labor Complications (November 2017)
This 2017 study found that treatment with abdominal radiotherapy increases the risk of developing hypertension complicating pregnancy in Wilms tumor survivors, and diabetes mellitus and anemia complicating pregnancy in all survivors.
Experimental Procedures (December 2019)
This December 2019 article about new clinical trials for male and female survivors explores the experimental procedures that may help broaden the fertility options for childhood cancer survivors.