When Katharine Len learnt that she had advanced breast cancer (ABC) a year ago, she felt as though the ground had shifted from under her feet. She’d gone to see a doctor because of a nagging ache in her lower back and right leg that had been bothering her for close to a month. Len thought it was because she had overstrained her back.
When her doctor came back with a diagnosis for stage four cancer, which had metastasized from an undetected tumor in her breast, Len was shocked.
“I didn’t know what to say. I couldn’t even think of what to ask the doctor. I just remember feeling numb, not knowing what to do next,” shares Len, 42.
Subsequent scans and blood tests showed that Len’s cancer had spread. She underwent an immediate mastectomy followed by chemotherapy and radiotherapy. She is currently on oral chemotherapy to control the spread of the disease.
“My friends and I used to say that if we were ever to be diagnosed with cancer, we’d want it to be breast cancer because it is supposedly the ‘most treatable’ type of cancer. But we’d never even heard of advanced breast cancer, which is a stage where the disease is treatable but uncurable,” says Len.
Advanced breast cancer, explains National Cancer Society Malaysia (NCSM) president/medical director Dr Saunthari Somasundaram, is breast cancer that has spread extensively to the lymph nodes and/or other tissue in the area of the breast (stage three) or to distant sites of the body such as the liver, lungs, bones, brain and/or other sides (stage four).
“The survival prognosis for advanced breast cancer is generally between 18 months to two years. However, with the advances in treatment that are available now, the average survival has gone up to four or five years, sometimes even more. Treatment parameters have changed and so have the outcomes,” says Dr Saunthari.
However, while treatment for women with ABC has advanced, Dr Saunthari says that support mechanisms for patients with ABC are close to nonexistent.
“For any woman with cancer, one of the first questions which will arise is ‘Why me?’. The emotional aspects of finding out you have the disease and the physical changes that will happen are some of the first things they will confront.
“For women with advanced breast cancer, however, the main issue is the uncertainty of the disease. With early stage breast cancer, you can have a plan – you chart out your treatments (with your oncologist) and at the end of it, you are able to have a life without cancer. With ABC, you don’t have that option … the question is not “Am I going to survive this disease?” but “What quality of life do I want and how do I achieve this?”.
“Treatment for ABC patients is continuous. Patients have to live with cancer and with the uncertainty of knowing that at any point, the cancer can progress. It is a whole different set of physical and emotional needs that need to be addressed,” she says.
In Malaysia, research shows that 6-10% of breast cancer cases are diagnosed at an advanced stage while 20-30% of women diagnosed with early stage breast cancer will develop advanced breast cancer.
A global survey conducted by pharmaceutical company Norvatis Oncology of nearly 1,300 women in 12 countries found that women living with ABC feel isolated and left out of the broader breast cancer movement.
The Count us, Know Us, Join Us survey indicated that nearly two-thirds of the women surveyed who have ABC feel like no one understands what they are going through: 77% of the women interviewed shared that they sought information on their own and between 45% to 55% of these women said information was still hard to come by and did not fully address their needs.
Lean on me
While medical support is readily available for patients with ABC, what is lacking is emotional, financial and community support, says Dr Saunthari.
“Treatment is available but when it comes to medical support (that goes) beyond treatment, it really depends on the hospital you go to. Some hospitals have an oncology nurse or a counsellor who can help a patient through it. But to be very honest, you are very lucky if you get into a hospital like that. Ideally, we should have hospital-based support as well as community support.
“In Malaysia, hospital-based support is very minimal and community support comes mainly from the non-government organisations, most of which focus on breast cancer awareness and early detection,” she says.
The Count us, Know Us, Join Us survey also revealed that while 80% of the women were happy with the medical support provided by their oncologists, 76% said they would like their health care professionals to address their emotional needs too.
Len agrees, sharing her experience.
“My doctor was really very helpful in explaining my disease and the treatments I had to go through. But I didn’t have the opportunity to talk to him about all the other things I was going through. After my initial treatment, I joined a support group for breast cancer because my friends urged me to. But I realised after going for a support group meeting that my concerns are very different from the other women in my group, most of whom are diagnosed with early stage breast cancer.
“I was not worried about getting a mastectomy or about how I would look after that. I was a little worried about my treatment but I was more concerned about how much time I have to be with my daughter who is only five years old. I was thinking about all the things I wanted to do while I had the time and strength to do it. I didn’t know how long I had? I didn’t know how long I should keep going for treatment and how much it would cost. I couldn’t relate to the group and so I left and looked for support online.”
This lack of local support for the ABC community has prompted NCSM to launch their first campaign for advanced breast cancer - Count Us In - to raise understanding and more importantly provide support for the ABC community and the challenges they face.
The campaign, endorsed by the Malaysian Oncological Society and supported by Novartis Corporation, hopes to not only circulate educational material and ABC guidebooks to cancer clinics, hospitals and medical centres but also to form an ABC advocacy group in Malaysia.
NCSM also hopes that through the campaign, Malaysia would be included in the next Count us, Know Us, Join Us survey conducted by Novartis.
“NCSM has until now focused primarily on the prevention and early detection of breast cancer. However, through our support groups we have realised in recent years that there is a growing group of women who require a different kind of support … those with ABC. With the advances in therapeutics, we are seeing more women who are living with ABC for longer periods of time and we need to address their needs as well as the needs of their family and caregivers.
“A supportive network will provide a net for these patients … knowing that there are others going through the same things and experiencing the same issues whom they can talk to can make a huge difference,” she says.
Family first
For ABC “survivor” Aldila Isahak, 43, support from her family has enabled her to maintain a positive attitude about living with cancer.
“I was first diagnosed with early stage breast cancer in 2009. At the time, it was easy to be positive and have hope because I knew that when detected early, treatment was possible and I could beat the disease. I started living a more healthy life … I watched what I ate and I kept active and two years later, my doctor declared that I was clear of cancer. He didn’t say I was cured but he said I was clear.
“So, when I was diagnosed with ABC last year, I was quite shocked. I had taken good care of myself … why had it come back? I was feeling good and even ‘adopted’ Nabilah, a 20-something-year-old whom I regard as my daughter. I went for chemotherapy (again) and it was tough. I experienced mood swings and was highly irritable and sensitive. It wasn’t because I was angry at people or at the disease. It was just a side effect of the treatment that I could not control.
“Thankfully I had the support of my family who took care of me during my treatment. My brother and sister-in-law insisted I stay with them and my mother helped them look after me. Because of their support, I became stronger … and so did my relationship with my siblings.
“I also had tremendous support from my boss who allowed me to take time off work to focus on my treatment,” says Aldila, a lecturer at the International Islamic University here in Kuala Lumpur. “Colleagues became my friends, offering support and spiritual and moral guidance. And now, I don’t want to just survive with cancer, I want to live. I want to be there for my daughter.”
For freelance insurance agent Pang Pay Fen, 49, one of the biggest concerns after being diagnosed with ABC was how she was going to finance her treatment.
“My insurance covered my surgery and initial treatment but I am on oral chemotherapy now which costs RM7,000 every three weeks. I told my doctor that I didn’t think I could afford it and he helped me apply to get into a trial with the Kuala Lumpur Hospital. Thankfully, my application went through and I could get the medication for free. This was a blessing because I could not afford to pay for treatment on my own. I have a son studying in Singapore and I didn’t want to have to withdraw him from school there. That would be very selfish of me,” says Pang whose son is a national athlete who represented Malaysia in swimming at the recent Sukma games.
When her doctor came back with a diagnosis for stage four cancer, which had metastasized from an undetected tumor in her breast, Len was shocked.
“I didn’t know what to say. I couldn’t even think of what to ask the doctor. I just remember feeling numb, not knowing what to do next,” shares Len, 42.
Subsequent scans and blood tests showed that Len’s cancer had spread. She underwent an immediate mastectomy followed by chemotherapy and radiotherapy. She is currently on oral chemotherapy to control the spread of the disease.
“My friends and I used to say that if we were ever to be diagnosed with cancer, we’d want it to be breast cancer because it is supposedly the ‘most treatable’ type of cancer. But we’d never even heard of advanced breast cancer, which is a stage where the disease is treatable but uncurable,” says Len.
Advanced breast cancer, explains National Cancer Society Malaysia (NCSM) president/medical director Dr Saunthari Somasundaram, is breast cancer that has spread extensively to the lymph nodes and/or other tissue in the area of the breast (stage three) or to distant sites of the body such as the liver, lungs, bones, brain and/or other sides (stage four).
“The survival prognosis for advanced breast cancer is generally between 18 months to two years. However, with the advances in treatment that are available now, the average survival has gone up to four or five years, sometimes even more. Treatment parameters have changed and so have the outcomes,” says Dr Saunthari.
However, while treatment for women with ABC has advanced, Dr Saunthari says that support mechanisms for patients with ABC are close to nonexistent.
“For any woman with cancer, one of the first questions which will arise is ‘Why me?’. The emotional aspects of finding out you have the disease and the physical changes that will happen are some of the first things they will confront.
“For women with advanced breast cancer, however, the main issue is the uncertainty of the disease. With early stage breast cancer, you can have a plan – you chart out your treatments (with your oncologist) and at the end of it, you are able to have a life without cancer. With ABC, you don’t have that option … the question is not “Am I going to survive this disease?” but “What quality of life do I want and how do I achieve this?”.
“Treatment for ABC patients is continuous. Patients have to live with cancer and with the uncertainty of knowing that at any point, the cancer can progress. It is a whole different set of physical and emotional needs that need to be addressed,” she says.
In Malaysia, research shows that 6-10% of breast cancer cases are diagnosed at an advanced stage while 20-30% of women diagnosed with early stage breast cancer will develop advanced breast cancer.
A global survey conducted by pharmaceutical company Norvatis Oncology of nearly 1,300 women in 12 countries found that women living with ABC feel isolated and left out of the broader breast cancer movement.
The Count us, Know Us, Join Us survey indicated that nearly two-thirds of the women surveyed who have ABC feel like no one understands what they are going through: 77% of the women interviewed shared that they sought information on their own and between 45% to 55% of these women said information was still hard to come by and did not fully address their needs.
Lean on me
While medical support is readily available for patients with ABC, what is lacking is emotional, financial and community support, says Dr Saunthari.
“Treatment is available but when it comes to medical support (that goes) beyond treatment, it really depends on the hospital you go to. Some hospitals have an oncology nurse or a counsellor who can help a patient through it. But to be very honest, you are very lucky if you get into a hospital like that. Ideally, we should have hospital-based support as well as community support.
“In Malaysia, hospital-based support is very minimal and community support comes mainly from the non-government organisations, most of which focus on breast cancer awareness and early detection,” she says.
The Count us, Know Us, Join Us survey also revealed that while 80% of the women were happy with the medical support provided by their oncologists, 76% said they would like their health care professionals to address their emotional needs too.
Len agrees, sharing her experience.
“My doctor was really very helpful in explaining my disease and the treatments I had to go through. But I didn’t have the opportunity to talk to him about all the other things I was going through. After my initial treatment, I joined a support group for breast cancer because my friends urged me to. But I realised after going for a support group meeting that my concerns are very different from the other women in my group, most of whom are diagnosed with early stage breast cancer.
“I was not worried about getting a mastectomy or about how I would look after that. I was a little worried about my treatment but I was more concerned about how much time I have to be with my daughter who is only five years old. I was thinking about all the things I wanted to do while I had the time and strength to do it. I didn’t know how long I had? I didn’t know how long I should keep going for treatment and how much it would cost. I couldn’t relate to the group and so I left and looked for support online.”
This lack of local support for the ABC community has prompted NCSM to launch their first campaign for advanced breast cancer - Count Us In - to raise understanding and more importantly provide support for the ABC community and the challenges they face.
The campaign, endorsed by the Malaysian Oncological Society and supported by Novartis Corporation, hopes to not only circulate educational material and ABC guidebooks to cancer clinics, hospitals and medical centres but also to form an ABC advocacy group in Malaysia.
NCSM also hopes that through the campaign, Malaysia would be included in the next Count us, Know Us, Join Us survey conducted by Novartis.
“NCSM has until now focused primarily on the prevention and early detection of breast cancer. However, through our support groups we have realised in recent years that there is a growing group of women who require a different kind of support … those with ABC. With the advances in therapeutics, we are seeing more women who are living with ABC for longer periods of time and we need to address their needs as well as the needs of their family and caregivers.
“A supportive network will provide a net for these patients … knowing that there are others going through the same things and experiencing the same issues whom they can talk to can make a huge difference,” she says.
Family first
For ABC “survivor” Aldila Isahak, 43, support from her family has enabled her to maintain a positive attitude about living with cancer.
“I was first diagnosed with early stage breast cancer in 2009. At the time, it was easy to be positive and have hope because I knew that when detected early, treatment was possible and I could beat the disease. I started living a more healthy life … I watched what I ate and I kept active and two years later, my doctor declared that I was clear of cancer. He didn’t say I was cured but he said I was clear.
“So, when I was diagnosed with ABC last year, I was quite shocked. I had taken good care of myself … why had it come back? I was feeling good and even ‘adopted’ Nabilah, a 20-something-year-old whom I regard as my daughter. I went for chemotherapy (again) and it was tough. I experienced mood swings and was highly irritable and sensitive. It wasn’t because I was angry at people or at the disease. It was just a side effect of the treatment that I could not control.
“Thankfully I had the support of my family who took care of me during my treatment. My brother and sister-in-law insisted I stay with them and my mother helped them look after me. Because of their support, I became stronger … and so did my relationship with my siblings.
“I also had tremendous support from my boss who allowed me to take time off work to focus on my treatment,” says Aldila, a lecturer at the International Islamic University here in Kuala Lumpur. “Colleagues became my friends, offering support and spiritual and moral guidance. And now, I don’t want to just survive with cancer, I want to live. I want to be there for my daughter.”
For freelance insurance agent Pang Pay Fen, 49, one of the biggest concerns after being diagnosed with ABC was how she was going to finance her treatment.
“My insurance covered my surgery and initial treatment but I am on oral chemotherapy now which costs RM7,000 every three weeks. I told my doctor that I didn’t think I could afford it and he helped me apply to get into a trial with the Kuala Lumpur Hospital. Thankfully, my application went through and I could get the medication for free. This was a blessing because I could not afford to pay for treatment on my own. I have a son studying in Singapore and I didn’t want to have to withdraw him from school there. That would be very selfish of me,” says Pang whose son is a national athlete who represented Malaysia in swimming at the recent Sukma games.
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