PETALING JAYA, April 14 – The end of cancer treatment is often seen as a triumph, but for many survivors, it is only the first step in a long and challenging road to recovery.
While cancer treatment may come to an end, the emotional and physical burdens of the condition often persist, leaving patients unprepared for the challenges that may follow.
From dealing with long-term side effects to adapting to a new lifestyle, cancer survivors often face many obstacles as they strive to move forward in their lives.
Sew Boon Lui, a 56-year-old patient advocate and the founding president of the Society for Cancer Advocacy and Awareness (SCAN) in Kuching, Sarawak, has been a cancer survivor for almost 20 years. She was first diagnosed with breast cancer in 2006 at the age of 39.
However, Sew remains grateful of being able to live a relatively normal life, though it has not been without its share of ups and downs.
“Every time I’m out in forums like this, I want to try my best to share the good things that I’ve encountered in life as a result of cancer. But at the same time, I’d love to share some of the darkness I have experienced because we live in a real world and are created with emotions,” Sew said at the Oncology Summit 2023 on March 10, organised by the Galen Centre for Health and Social Policy and supported by Takeda Malaysia.
Beyond Remission: The Ongoing Needs Of Cancer Survivors
Even after completing cancer treatment, many survivors require ongoing medical care, including regular checkups, mammograms, lab tests, chest X-rays, and other follow-up measures that can extend over several years, Sew said.
Unfortunately, some individuals may think they are cancer-free after a period of remission and forgo their follow-up care. Regular medical check-ups are crucial for monitoring the person’s health and detecting any recurrence or new cancer early.
“There are some who actually encounter lots of prolonged side effects, such as numbness in fingers and toes. It may seem very small, but it can be very inconvenient for those who do heavy work. How about those with lymphedema issues or those who had breast surgery? This can impact them months and years down the road.
“What about issues with insomnia and quality of sleep? What about menopause-related issues? For many women who have been through cancer, they actually stop having menses much earlier than the rest. So, what kind of supportive care is available for these problems?” Sew said.
“Yes, you can say if you go to a doctor, the doctor will give some medication or some help. But the actual fact is, especially in the public hospital setting, how much time can the doctor [spend to] talk [to patients], don’t talk about oncologists, even medical officers in the public hospital who are helping us so much in oncological work, how much time do they spend with patients – maybe five, seven, ten minutes?
“How much can they (patients) share about their illnesses, their problems? Very little. And a lot of patients or survivors, they would think, ‘Oh my matter is very small. Now that I don’t have cancer, I’m done with treatment, I better don’t talk so much. I better just listen to my doctor. My blood test is good, okay, go home.’
“They may have some prolonged pain, but they don’t tell their doctors,” Sew said. While she acknowledged that there are non-governmental organisations (NGOs) and support groups that offer assistance to cancer patients, Sew emphasised the need for improved support and care for the high number of survivors each year.
“The reality is that every year there are thousands – I don’t have the statistics – but we have thousands of new cancer survivors, even though we know survival is not for everyone. There are still many, many survivors accumulated over the years.
“How many of them can we reach out to? I would say the minority. Where are the majority? Where are we going to find someone to [help them] get support and encouragement? This is one area we need to look into.”
Cancer Survivors Not Immune To Other Health Issues
Sew shared two incidents during the Covid-19 pandemic that highlighted the importance of education and survivorship care for cancer patients and survivors.
“Back in June 2020, three months into the movement control order (MCO), one evening, I had an attack, a sudden severe headache and my left eye vision became blurry at that particular moment.
“So I was very naive. I thought to myself, maybe I just need to have a rest, things will be better and the pain will be gone. But surprisingly after two hours, the pain continued, it was very persistent. So I decided to go to the emergency department in the hospital. Lo and behold, the doctor on duty discovered, ‘Oh, you have acute glaucoma’.
“I got the shock of my life. What is that? You know, it’s a new vocab. So very soon after I was attended to by an eye specialist, I got some medicated eye drops – a lot of procedures and a lot of follow-ups. And in the end I actually went for a laser procedure for a temporary fix.
“And a year plus later, I did my cataract surgery and then another year later I did cataract on the other side as well. So I’m now able to use my eyes without spectacles. Not to say I have perfect vision, but it is much better than before. So this is one incident I had,” Sew said.
The second incident involved a fall that happened in her home. “It’s the same path that I have used over the last 20 years – from the wet kitchen to the dry kitchen. I had a fall, hit the door, and I had this excruciating pain on my thigh bone on the left side.”
Sew’s visit to the emergency department led to an X-ray check that found a broken thigh bone. “So, I was wheeled in for operation and I have titanium. Now, I have to call myself a titanium rod lady. I have a titanium rod here and it took me seven months to have a full recovery to walk normally.”
Sew highlighted the need for survivorship care plans and education in the cancer community as patients and survivors are not immune to other health issues. As Sew put it, “It’s not like, ‘Oh, you have cancer, so you are insulated from other things’. Anything can happen to us survivors.”
Sew raised concerns about the availability and accessibility of services like physiotherapy, massage, and acupuncture in public hospitals, citing long queues and limited availability even if patients request them.
In her opinion, improving survivorship care would require addressing these issues and making comprehensive care more accessible to the majority of cancer patients (70 to 80 per cent) who rely on public hospitals.
Sew also emphasised the crucial role of psychosocial support for cancer patients, given the numerous challenges they may face throughout their battle with cancer.
The Sarawakian cancer advocate stressed that the emotional and psychological well-being of cancer patients is just as important as their physical health, and that they need access to support and counselling services to help them cope with the trauma of their diagnosis and treatment.
She firmly believes that addressing the entire range of cancer patients’ needs is essential for improving survivorship care and ensuring that they receive comprehensive support to thrive beyond their cancer diagnosis.
