How do I adapt to the new life-style changes: poor body image, fertility issues and puberty changes

Facing physical challenges

Some cancer treatments can affect puberty, fertility, hormones, and sexual development. For some survivors, puberty may be delayed or may not happen in the usual way. Others may experience early menopause or changes that make them feel different from their friends and peers. These experiences can be confusing, upsetting and sometimes lonely.

Many survivors feel worried about talking to a partner about fertility or sexual health. Others may feel self-conscious about changes to their bodies or struggle with confidence and intimacy. If this is how you feel, please know that you are not alone.

Remember: You are not defined by your body. Your worth, value and identity are far greater than your appearance or your ability to have children.

Researchers are still learning about the long-term effects of childhood and adolescent cancer on sexual health and sexual wellbeing. Although there is limited research, we do know that some survivors continue to experience challenges many years after treatment has ended.

These challenges may include delayed or absent puberty, early or premature menopause, hormonal changes, fertility concerns or infertility, differences in brain development that may influence emotional or sexual development, body image concerns or ongoing physical or functional changes that affect confidence and intimacy.

Young adult survivors often describe feeling different from their peers when it comes to relationships, dating, and sexuality. Studies suggest that the age at which cancer occurs may influence later sexual wellbeing. Some survivors experience difficulties with sexual desire, arousal, or satisfaction. Men may experience erectile difficulties, while women may experience early menopause or vaginal changes. For many survivors, body image changes can affect self-esteem and confidence.

The emotional impact can be just as significant as the physical changes. Survivors may experience anxiety, depression, sadness, grief, guilt, or shame about how they look or feel. Some feel angry that cancer changed important parts of their lives or delayed experiences such as dating, developing relationships, exploring their sexuality, finishing school, or starting a career. These feelings are understandable and deserve compassion and support.

Changes that can influence body image include hair loss or changes in hair growth, scars from surgery or treatment, weight gain or weight loss, stretch marks, limb loss or other permanent physical changes, loss of sensation or changes in sexual functioning, feeling different from others their age or missing important life experiences because of treatment.

Some survivors may take risks in relationships or sexual behaviour as they try to make up for experiences they feel they have missed. If this happens, it is important to seek guidance from a trusted healthcare professional or counsellor who can provide support without judgement. Talking about fertility and sexual health can feel uncomfortable, but these conversations are important. Every childhood and adolescent cancer survivor deserves clear, honest, and age-appropriate information. 

Healthcare professionals, parents, and caregivers should create safe spaces where survivors can ask questions, express concerns and receive support. We should never assume that a survivor already has the information they need or that they are not experiencing challenges simply because they have not spoken about them. Healing is about more than surviving cancer. It also means supporting your emotional wellbeing, relationships, confidence, hopes for the future and the life you want to build.

How to deal with it:

- Attend regular medical check-ups. Ask your healthcare team to monitor your hormone levels and discuss any changes you may be experiencing.

- Talk to your treating doctor. Ask about the possible long-term effects of your treatment on puberty, fertility, hormones, and sexual health. No question is too small or embarrassing.

- Seek advice from a fertility specialist if you have concerns about your fertility now or in the future. Understanding your options can help you make informed decisions.

- Communicate openly with your partner. Honest conversations about your feelings, fears and hopes can strengthen your relationship. If these conversations feel difficult, consider seeing a counsellor or therapist together.

- Be kind to yourself. Healing takes time. Your body has been through a great deal, and it is okay if confidence and intimacy do not return immediately.

- Remember that you are more than your diagnosis. Your ability to love, build meaningful relationships and live a fulfilling life is not defined by your cancer experience or your fertility.

- Reach out for support. Speaking with a psychologist, counsellor, social worker or joining a cancer survivor support group can help you process your emotions and realise that you are not alone.

References

- St Jude Children’s Research Hospital. n.d. Fertility Problems in Females. https://together.stjude.org/en-us/teensand20s/how-treatments-may-affect-you/infertility-in-female-patients.html

- Sage Bolte. 2020. The Sexual Self and Cancer: Redefining the New Normal. Journal of Oncology Navigation and Survivorship. https://www.jons-online.com/issues/2020/february-2020-vol-11-no-2/the-sexual-self-and-cancer-redefining-the-new-normal

- Brooke Cherven, et.al. 2020.   Sexual health among adolescent and young adult cancer survivors: A scoping review from the Children's Oncology Group Adolescent and Young Adult Oncology Discipline Committee. American Cancer Society. https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21655

- Melissa Hudson. 2016. Reproductive Outcomes for Survivors of Childhood Cancer. PubMed Central. https://pmc.ncbi.nlm.nih.gov/articles/PMC4729296/

Webinars

Promoting Healthy Body Image & Sexuality Series:

1. Fertility and sexual aspects in PO patients. https://www.youtube.com/watch?v=72s5b-cEuhQ
2. Talking to adolescents and young adults about sexual health. https://youtu.be/H5ddTgGQ_MU?si=eDRAUUUSFT0tBwB6
3. Assessing and addressing the sexual self of childhood cancer survivors. https://www.youtube.com/watch?v=YVkKnDYksY8
4. Long-Term Survivorship Care: Navigating Fertility and Intimacy Challenges. https://www.bing.com/videos/riverview/relatedvideo?q=European+Network+of+youth+cancer+survivors+-+articles+on+sexuality+and+poor+body+image&mid=F2F3CEC9835226F94AA0F2F3CEC9835226F94AA0&churl=https%3a%2f%2fwww.youtube.com%2fchannel%2fUCOkSMEu3zrTDpdzDu0IlD-Q&FORM=VIRE
5. ISSM Webinar on Oncosexology; Sexuality in cancer survivors. https://www.bing.com/videos/riverview/relatedvideo?q=European+Network+of+youth+cancer+survivors+-+articles+on+sexuality+and+poor+body+image&mid=883DF81CF5546B9AC67F883DF81CF5546B9AC67F&churl=https%3a%2f%2fwww.youtube.com%2fchannel%2fUCyfrPx9R8T17NZbxZHoEXgQ&FORM=VIRE