Living with metastatic breast cancer, Sew Boon Lui is making every day count.
TWO years ago Sew Boon Lui found out that her cancer had returned. It had spread to her liver, right lung, right leg and thigh. The diagnosis – metastatic breast cancer - was heart-breaking news for Sew as she had survived the first round of treatment for breast cancer in 2012.
However, she was not surprised that she had suffered a relapse and was prepared to fight the disease again.
Sew was diagnosed with breast cancer in 2006 after she detected a lump in her left breast. Through a mammogram and computerised tomography (CT) scan, it was revealed that there were multiple smaller lumps. She had surgery to remove the breast, followed by radiotherapy and chemotherapy.
She went through 20 sessions of radiotherapy for four weeks. The treatment continued with chemotherapy for eight cycles. Sew completed both radiotherapy and chemotherapy in 2007 and was put on oral medication for five years. She also had follow-up visits every six months until 2012, after which it became a yearly visit.
At each follow-up, every test — chest x-ray, CT Scan and ultrasound — did not detect any remnants of cancer cells. In June 2017, four months after her last follow-up, Sew suffered breathing difficulties and chest pain, especially when she coughed. The x-ray did not show anything wrong, so the doctor gave her medication for the cough.
“However, a week later the pain got worse. I had another round of x-rays and CT scans and this time some spots were detected in my liver and right lung. The doctor did a liver biopsy and confirmed that it was metastatic breast cancer.
“I did feel depressed and sad but was not surprised that the cancer had returned and spread. When I went through my first treatment, I read a book written by a neurosurgeon on his journey as a cancer patient. After reading the book, I was prepared mentally to deal with the possibility that the cancer would return.”
UPS AND DOWNS
If people expect a metastatic breast cancer patient to be weak, bedridden or waiting to die, Sew is proof that it needn’t be the case. She is vibrant, energetic and full of life, determined to live as normal a life as possible while dealing with the ups and downs of her condition. Since her diagnosis she has been on targeted therapy at Sarawak General Hospital in Kuching, where she lives.
“Thankfully, I have mostly good days and I’m able to handle my daily routine. The only thing I need is to plan my day so that I can have a good rest in the afternoon.
“There are days I feel tired and suffer from diarrhoea due to the side effects of my medication, but it’s still manageable. One of the worst days I had was a few weeks after my diagnosis. I had excruciating pain in my right leg and thigh as the cancer had spread to my sacrum which is the back part of the pelvis. I had five sessions of radiotherapy and since then I don’t have any pain.”
As a cancer patient, Sew knows that support and advocacy are vital when dealing with the disease. To advocate better cancer healthcare in Sarawak, Sew set up the Society for Cancer Advocacy & Awareness Kuching (SCAN) in 2017. It has a team of 40 that includes cancer survivors and patients, caregivers, nurses, medical professionals and volunteers.
SCAN’s aim is to raise cancer awareness and advocacy in Sarawak, for positive change in cancer healthcare in the state, and educate the public to go for early screening and diagnosis that can improve treatment outcomes.
Sew says there are many issues that cancer patients have to deal with including access to treatment and financial problems, especially for those who cannot afford private hospitals and are living in rural areas. At the moment, Sarawak General Hospital is the only public hospital with an oncology unit.
The society has also conducted a study on cancer awareness in Sarawak which will be submitted to the state government. It has also carried out campaigns including a walk for cancer awareness, survivor sharing sessions, and networking with 12 non-governmental cancer organisations in Sarawak. Recently, it launched a book titled So You Have Cancer – What Now? — it is a guide for cancer patients.
Sew, 52, says the uncertainly is the biggest challenge for her. However, rather than ponder about the future, she focuses on her short- and mid-term plans. She keeps busy planning SCAN activities and organising a family get-togethers. She also hopes to attend the World Cancer Congress in Muscat, Oman in Oct 2020.
“I am thankful that I have survived for two years. The cancer cells have shrunk and there are no new ones and my condition is stable with medication and regular monitoring.
“I want to make every day count and not think of how much time I may have. Whether I have one year or three years to live, nobody knows, but I will not let it affect my mind. Of course, I pray and hope that God will allow me to see my son and daughter graduate from university and have lives of their own. I also want to enjoy quality time with my husband for many more years.”
HEALTHY LIFESTYLE KEY TO PREVENTION
METATASTIC breast cancer, also referred to as stage 4 breast cancer, is the result of haematogenous spread, where the cancer cells travel through blood vessels usually to distant sites such as the bones, brain, lung and liver.
Some women may be initially diagnosed with metastatic breast cancer. For others, cancer cells can spread months or years after their initial treatment. While the diagnosis of metastatic breast cancer is grim, with advanced treatment options, patients have better outcomes.
Dr Tho Lye Mun, Pantai Hospital Kuala Lumpur’s consultant clinical oncologist, says a metastatic breast cancer diagnosis can be overwhelming, especially when there is lack of knowledge about the disease and treatment options.
“Many are aware that it is incurable but they do not know that treatment is available. Some are concerned about the side effects and may not realise that modern treatments are manageable and address quality of life as much as control of the cancer.
“Patients can have confidence that there are more metastatic treatment options today that are effective such as targeted therapy. Many patients continue to live long, fulfilling and productive lives while being treated for metastatic breast cancer.”
Here, Dr Tho explains further on the symptoms, treatment options and outlook for metastatic breast cancer patients.
Q: WHAT ARE THE SYMPTOMS OF METASTATIC BREAST CANCER?
A: The symptoms depend entirely on which part of the body is affected. For example, if the tumours have spread to the bone, common symptoms are back, bone, or joint pain; or if it has spread to the neck, it can cause a palpable lump, sometimes painful, or a rash on the neck. Sometimes cancer in general can cause lethargy, loss of appetite, weight loss despite a normal appetite, and fever..
Q: CAN METASTATIC BREAST CANCER BE CONTROLLED?
A: The most effective way to prevent the disease from developing is to undergo neo-adjuvant or adjuvant therapy with chemotherapy, radiotherapy, hormonal therapy and targeted therapy at the time of surgery when the cancer is detected in stages one, two and three.
There is also some evidence that suggests a healthy lifestyle plays a key role in prevention. This includes a healthy, balanced diet rich in vegetables, fibre, fruits, vitamins and minerals.
An exercise programme is recommended, paying attention to both aerobic, and anaerobic fitness, muscle and bone strength, conditioning and weight control/reduction.
Adequate sleep, attention to stress management, a positive attitude and spiritual health all come into play. All these elements contribute to a robust immune system.
Q: WHAT ARE THE TREATMENT OPTIONS?
A: In general, there are four types of treatments — chemotherapy, radiotherapy, targeted and hormonal therapy.
Treatment selection is influenced by many factors such as the unique characteristics of the patient’s cancer (breast cancer subtypes include hormone positive, triple negative or HER2 positive), the extent and seriousness of the spread and past treatments, which means those treatments are unlikely to work if repeated.
The oncologist also needs to take note of the patient’s age, fitness and the existence of concurrent illnesses such as diabetes, heart attack or stroke which may limit the intensity the treatment offers.
There are no hard and fast rules but it is important that the oncologist and the patient are aware of all their options before deciding on the right treatment.
Q: WHAT ARE THE GOALS OF TREATMENT?
A: The goals are to kill as many cancer cells as possible; keep the remainder under control for as long as possible; and maintain a good quality of life and function. Sometimes, patients may have a very good response to treatment and the cancer cells or tumours disappear from the scans. This is certainly a very encouraging situation and is termed complete response to therapy. Nevertheless, these patients need to remain under close observation.
Q: WHAT IS THE PROGNOSIS FOR PATIENTS?
A: Prognosis has improved by leaps and bounds compared to decades ago. We understand the disease better now and have been able to develop targeted therapies such as the CDK4/6 inhibitor Palbociclib. Palbociclib is taken in combination with hormonal therapies.
I have many metastatic breast cancer patients who manage to have fulfilling and productive years whilst on therapy. Side effects from therapies can occur but are usually manageable. The oncologist will need to monitor these effects and intervene in a timely fashion before they escalate beyond control.
Q: WHAT IS YOUR ADVICE FOR PATIENTS?
A: Don’t lose hope. There are many effective treatments that can help you live long, fulfilling, and productive lives while being treated. Speak with your oncologist about your treatment plan.Look into support groups for metastatic breast cancer patients, there may be useful insights and encouragement to be gained from others who are on a similar path as yours.
Don’t be afraid to talk about your condition. Family and friends are important as are your spiritual and emotional support networks.