For families whose loved one is living with prostate cancer, the journey is often long, emotionally complex and quietly exhausting. While treatment decisions may happen in clinics and hospitals, the day-to-day reality of care unfolds at home, where spouses or partners, children or other loved ones step into caregiving roles they never expected to take on.
World Cancer Day is a timely reminder that cancer care encompasses more than just getting treatment; it permeates every aspect of life.
This is the story of the caregiving journey, with insights from three different healthcare experts on daily care, and how the latest advances in oncology and nuclear medicine are helping to ease both medical uncertainty and emotional strain
Prostate Cancer in Malaysia: Why Families Matter
In Malaysia, prostate cancer is the third most common cancer affecting men. The disease most commonly affects men aged 50 and above, with a sharp increase after the age of 60, and at least three in five men with prostate cancer are diagnosed at a late stage. At this point, treatment options can be more complex and outcomes less favourable.1, 2
Oftentimes, this can be attributed to the lack of routine cancer screening and the tendency to dismiss early warning signs such as urinary difficulties as part of normal aging, resulting in delayed diagnosis and treatment,” said Dr Ang Soo Fan, Consultant Medical Oncologist. “When diagnosis occurs late, the consequences of advanced disease such as bone pain, impact on daily activities and reduced survival, is felt not only by the patient, but by the entire family.”
According to Dr Ang, families play a crucial role from the very beginning, by encouraging early screening, supporting treatment decisions and helping patients stay motivated throughout their treatment journey.
“A cancer diagnosis is always challenging, and each patient’s concerns are unique,” he explained. “Some worry about losing their independence or becoming a burden to their loved ones, while others fear that cancer is a death sentence. Part of our role is to help patients and their families understand that, with today’s treatment options, even advanced prostate cancer can respond well to therapy, allowing many patients to maintain a good quality of life.”
Open and effective communication, setting expectations and adhering to therapy, he added, are essential, and caregivers are key partners in this journey.
The Family Caregiver Role: More Than Just Practical Help
For many families, caregiving begins suddenly and intensifies as the cancer progresses. Adult children and other family members caring for aging fathers may find themselves juggling work, parenting and medical responsibilities, together with the emotional and physical demands of caregiving.
“The caregiving burden is both practical and emotional. For example, they help to manage appointments, medications and daily care, while also supporting their loved one emotionally. It can become overwhelming,” said Registered Nurse Quah Sui Jing, who is trained to counsel patients and caregivers on making the necessary adjustments to their daily routine and patient care.
In many instances, Nurse Quah and others like her offer immeasurable support to caregivers, who often serve as the link between the patient and the healthcare team. In addition to daily care, they also attend consultations, help to make sense of medical information and ensure treatment plans are followed.
Prostate Cancer Management: A Team-Based Approach
As prostate cancer care can be complex, patients benefit most from a multidisciplinary approach involving oncologists, urologists, nuclear medicine physicians and specialised nurses.
“This coordinated approach ensures that treatment decisions are personalized and well-informed,” said Dr Ang. “It also allows families to be involved early, especially when shared decision-making is needed.”
At consultations, family members are encouraged to ask the team any questions that can help facilitate better outcomes for their loved one.
How Advances in Diagnosis and Treatment Can Ease the Caregiver Burden
For many families, uncertainty about disease progression is one of the most stressful aspects of caregiving. This is where nuclear medicine can play an important role.
“For most patients, the journey begins with staging, which is understanding where the cancer is and how far it has spread,” said Dr Alex Khoo Cheen Hoe, Consultant Nuclear Medicine Physician. “One approach used is an imaging technique that detects PSMA (prostate-specific membrane antigen)-expressing prostate cancer cells. This is known as PSMA PET imaging. PSMA PET imaging has been shown in many studies to be far more sensitive than conventional scans, allowing doctors to detect prostate cancer more accurately, even when the tumor is small or difficult to see. This allows earlier and more accurate detection of where the cancer is located and how far it has spread, especially in populations where many patients present with advanced disease, as is the case in Malaysia.”
“With PSMA PET imaging, we see what we treat, and we treat what we see – this helps guide treatment decisions and also allows us to plan the most appropriate therapy and monitor how well treatment is working. This can be very reassuring for patients and caregivers, who can then clearly see what is happening over the course of treatment, which helps to reduce anxiety and provide motivation to continue with treatment,” Dr Khoo explained.
In advanced cases where standard treatments are unsuitable or no longer effective, radioligand therapy (RLT) can be considered. PSMA PET imaging also enables this by accurately “lighting up” prostate cancer cells, like a drone surveying a target, allowing RLT to strike precisely at the tumor while limiting impact on the surrounding healthy tissue. For the patient, this can mean milder side effects and better quality of life while on their treatment journey.3
“Some patients are able to return to work and continue daily activities, or treatment can give them meaningful time to attend important life events and plan ahead,” added Dr Khoo. “However, we are also very realistic with patients, especially those with advanced prostate cancer, that it can return even after successful treatment. Patients need to understand that while therapy can prolong life, regular imaging and monitoring remain essential to detect any recurrence early.”
Practical Guidance for Day-to-Day Care
While receiving treatment with nuclear medicine, patients must learn to make the necessary adjustments to their daily habits and lifestyle, with support from their multidisciplinary team and caregiver.
Drawing on their combined expertise, Nurse Quah, Dr Ang, and Dr Khoo offer practical advice to help caregivers manage daily responsibilities and support patients throughout treatment, including:
- Staying organised: Use medication schedules, pill organisers and appointment reminders. Patients undergoing RLT often require regular blood tests (usually every two to four weeks) and treatment cycles are typically spaced several weeks apart (usually every six to eight weeks).
- Supporting independence: Help where needed, but allow patients to retain autonomy when possible. If the patient is weak or frail, learn how to help patients with daily routines such as bathing, personal hygiene and moving around the house safely. Consider urinals or adult diapers for convenience.
- Monitoring symptoms: Encourage open communication. Some patients may hide pain, fatigue or emotional distress to avoid worrying their family. While minor ailments may be manageable at home or with the help of a family physician, it is best to check with the treatment team for advice. For more serious symptoms like shortness of breath or vomiting, it is best to contact the treatment team immediately or get to the Accident and Emergency for immediate medical attention.
- Encouraging healthy habits: Gentle activity, balanced nutrition and hydration help patients stay strong enough to continue treatment.
- Preparing for post-treatment care following any form of nuclear medicine therapy such as radioligand therapy (RLT). Patients will need to:
- Rest if they feel tired, or engage in gentle activity only.
- Maintain at least 1 metre distance from others, for 2 days; pregnant women and children should keep their distance for 7 days to prevent unnecessary exposure. Caregivers can plan ahead to have any necessary items close at hand, like drinks or snacks, while meals can be delivered.
- Drink more water to manage dry mouth, a possible side effect, prevent dehydration and flush out radiation that is expelled in urine.
- Remain seated while urinating to prevent accidental contamination of the surrounding area, and to flush twice. If patients need to use a urinal or bedpan, caregivers should wear gloves while handling its disposal.
Caring for Emotional Well-being – Including Your Own
Emotional strain is common for both patients and caregivers, particularly in advanced prostate cancer.
“Patients may experience mood changes, anger or frustration,” Nurse Quah said. “Even when it’s difficult, caregivers need to remain calm and supportive, while also recognising their own limits.”
Self-care, she emphasized, is not optional. Sharing responsibilities with other family members, seeking emotional support and connecting with caregiver or patient support groups can help prevent burnout.
“You cannot care for someone else if you are completely exhausted,” she said.
Moving Forward, Together
Living with prostate cancer is a journey that affects the entire family. With the right information, support and medical guidance, caregivers can play a powerful role in helping their loved ones navigate treatment and daily life with dignity and confidence.
“Take things one step at a time,” said Dr Ang. “Ask questions, stay involved, and remember that you are not alone in this journey.”
For more information on prostate cancer care and caregiving support, speak to your doctor or nurse, or visit the ICanCare app for additional resources and guidance.
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References:
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Summary of The Malaysia National Cancer Registry Report 2017-2021. https://nci.moh.gov.my/images/pdf_folder/SUMMARY-OF-MALAYSIA-NATIONAL-CANCER-REGISTRY-REPORT-2017-2021.pdf
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Lim J et al. Prostate cancer in multi-ethnic Asian men: Real-world experience in the Malaysia Prostate Cancer (M-CaP) Study. Cancer Med. 2021;10(22):8020–8028. doi:10.1002/cam4.4319.
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American Journal of Managed Care. Will the Coming Radiopharmaceutical Wave Reach More Patients with Cancer? April 2025, Volume31, Issue 04 (SP181-SP183). https://www.ajmc.com/view/will-the-coming-radiopharmaceutical-wave-reach-more-patients-with-cancer-
