Understanding Survivorship: Life After a “Below the Belt” Cancer Diagnosis
More people are living with and beyond cancer than ever before
Due to higher diagnosis rates and advances in detection and treatment, it is estimated that by 2040 around 1.9 million Australians will be living with or beyond cancer, including approximately 372,000 people with prostate cancer.
What does “survivorship” mean?
The Australian Cancer Survivorship Centre (ACSC) defines a cancer survivor as anyone diagnosed with cancer, from the time of diagnosis for the rest of their life. This includes people who are:
- Having treatment
- In recovery after treatment
- Living with cancer long term
It’s important to recognise that the term “survivor” may not feel right for everyone. People have different experiences and preferences, and not everyone identifies with this term.
What is survivorship care?
Cancer survivorship care focuses on supporting your wellbeing after a cancer diagnosis.
Everyone’s experience is different. Some people return to their usual activities, while others continue to experience effects of cancer or its treatment, such as:
- Ongoing side effects
- Worry or fear about the cancer returning
- Physical, emotional, financial, or social challenges
Many people describe adjusting to a “new normal.” This can take time so it’s important to go at your own pace and seek support when you need it.
Living with ongoing (treatable but not curable) cancer
Treatment may continue over a long period, with times when the cancer is stable and times when it changes or grows. Living with this uncertainty can affect:
- Wellbeing
- Relationships
- Work and finances
Support from a multidisciplinary care team, including doctors, nurses and allied health professionals (such as physiotherapists, dietitians, occupational therapists, social workers and psychologists), can help manage symptoms and support decision-making.
Early involvement of palliative care can also help improve symptom control, quality of life, and planning for the future.
Ongoing care and survivorship planning
With the increase in survivorship there is increasing focus on supporting people living beyond cancer.
Your healthcare team will help you manage the physical, emotional and practical effects of cancer and its treatment. This may include:
- Monitoring for recurrence or new cancers
- Managing side effects
- Supporting your overall wellbeing
You may find it helpful to have a survivorship care plan. This plan summarises:
- Your diagnosis
- Treatments you have received
- Recommended follow-up care
It can be shared with your healthcare providers to support communication, coordination of care and healthy lifestyle changes.
Speak with your GP or specialist for more information about Survivorship care plans.
Physical changes and side effects
Treatments for urogenital, or “below the belt,” cancers can affect the body in different ways, both during treatment and after it has finished.
Depending on your cancer and treatment, you may experience:
- Changes to fertility
- Bladder or bowel control changes
- Changes in sexual function or intimacy (such as erectile difficulties, reduced sex drive, or altered sensation)
Some people also experience more general effects, including:
- Fatigue
- Pain
- Tingling or numbness in the hands or feet
- Changes in memory or concentration
These changes can affect confidence, body image, relationships and emotional wellbeing.
Support and treatment options are available, and many symptoms improve over time or can be managed.
It’s important to talk openly with your healthcare team about any concerns, including:
- Fertility
- Pelvic floor health
- Continence
- Sexual wellbeing and intimacy
They can help you access practical strategies and specialist care.
Open communication with partners, along with professional support, can also help rebuild confidence and intimacy.
Emotional Wellbeing After Treatment
It’s common to experience a wide range of emotions after treatment.
These may include:
- Fear or uncertainty
- Anxiety
- Worry about cancer returning
- Frustration
- Feeling isolated from the healthcare team
- Loss of confidence
- Relief or hope
These reactions are common and understandable.
Be patient with yourself and reach out for support if needed.
Many people worry about the cancer returning or feel uncertain about the future. Around 7 in 10 people experience this at some stage.
Acknowledging your feelings and discussing them with friends, family, or professionals such as your GP, psychologist, or counsellor can be helpful. Many people also find value in support groups, where shared experiences can reduce feelings of isolation.
The Role of Exercise and Physical Activity
Regular physical activity can play an important role in recovery and long-term wellbeing for many people.
Even small amounts of movement, such as walking or gentle stretching, can be beneficial if appropriate for you.
Your healthcare team can guide you on what is safe and appropriate and may refer you to an exercise physiologist or physiotherapist with experience in cancer care.
Looking After Yourself and Getting Support
Looking after yourself during survivorship includes asking for help when you need it.
Your healthcare team can support you to:
- Manage side effects
- Monitor any ongoing symptoms
- Develop a plan for symptom or pain management if required
Emotional support is just as important as physical care.
If you need extra support, services are available:
- Beyond Blue: 1300 22 4636 or beyondblue.org.au
- Lifeline: 13 11 14 or lifeline.org.au
Resources
- Cancer Australia: www.canceraustralia.gov.au (including Principles of Cancer Survivorship report)
- Cancer Council: www.cancercouncil.com.au (including Living Well After Cancer and Living with Advanced Cancer guides)
- Australian Cancer Survivorship Centre (ACSC): petermac.org/cancersurvivorship (including resources for survivors, carers, survivorship for Aboriginal and Torres Strait Islander People, adolescents and young adults, children, LGBTQIA+ people and people who speak languages other than English)
- My Care Plan (survivorship care plans): www.mycareplan.org.au
- Cancer Institute NSW: cancer.nsw.gov.au
- Prostate Cancer Foundation Australia: pcfa.org.au
- Cancer Society NZ: cancersupport.org.nz
- Prostate Cancer Foundation NZ: www.prostate.org.nz
References
- Cancer Council Australia. 2018. Australians living with and beyond cancer in 2040. https://www.cancer.org.au/ assets/pdf/australians-living-with-and-beyond-cancer-in-2040
- Australian Cancer Survivorship Centre. (n.d.). Coping with the fear of cancer coming back (fear of cancer recurrence) fact sheet. Peter MacCallum Cancer Centre. https://www.petermac.org/component/edocman/acsc-factsheet-fear-of-cancer-coming-back/viewdocument/115
The information provided is based on the resources listed above and treatment guidelines and is intended as a general introduction only. It does not replace professional medical advice. While every effort is made to ensure accuracy at the time of publication, information about cancer is continually evolving as medical research advances.
It is important to consult your doctor if you have any health concerns or questions about your diagnosis or treatment.