It’s time to talk about the “hard stuff” this Breast Cancer Awareness month.
National Cancer Society Malaysia (NCS) president Dr Saunthari Somasundaram wants health professionals, non-government organisations and communities to embrace and address women with breast cancer whose disease is at the advanced stage.
Advanced breast cancer or metastatic breast cancer is cancer that has spread locally to other areas of the breast or beyond the breast to the lymph nodes or other organs of the body such as the lungs, liver or bones. Almost 50% of breast cancer patients in Malaysia are in the advanced stages. For them, the issue is living with cancer, not surviving it.
In Malaysia, it is estimated that more than 30% of women with cancer are diagnosed at the advanced stage (Stage 3) when the chances for successful treatment is relatively low when compared to early stages of the disease. Women with Stage 4 breast cancer make up about 20% of breast cancer patients.
While this indicates that more needs to be done to create awareness on the importance of early detection, Dr Saunthari feels equal emphasis needs to be placed on supporting women with advanced breast cancer (ABC).
“At the moment, these women tend to feel sidelined. Most of us tend to focus on the rah-rah surrounding breast cancer – the advances in treatments available, the stories of survivors who beat cancer early and so on.
We do this because we don’t want people to immediately link cancer to death and also because there are amazing breakthroughs in treatments that have changed the game.
“But by focusing only on this aspect of breast cancer, we are ignoring a whole group of women with advanced breast cancer. These campaigns don’t sit well with this group because their reality is so different,” she points out.
Statistics show that 20% to 30% of the people with early stage disease will develop ABC later on. Although a woman may be diagnosed with ABC on her first diagnosis without any history of breast cancer, having had breast cancer increases the risk.
The responsibility, she says, should be shared by health professionals, NGOs, caregivers, support groups as well as the community.
“We aren’t very good in talking about the hard stuff. We walk around it and avoid it but that isn’t helpful. We have to confront it and then talk about how we can help patients with ABC live comfortably with cancer. We must be open but we also must talk about it with empathy,” she says.
This year, NCSM is focusing their breast cancer awareness activities on advanced breast cancer.
Last week, the NGO launched its guidebook for women with advanced breast cancer with information as well as frequently asked questions to address some of the common concerns women with ABC have.
The organisation is also in the process of creating a website that will link patients and caregivers with health professionals, creating an online support community and resource point for patients and their families.
“We’re trying to change the game. There are many support groups for women with breast cancer but they aren’t equipped to deal with issues of advanced breast cancer. Let’s face it, advanced breast cancer is the very thing these survivors dread. It is their greatest fear that their cancer will come back or develop into ABC.
And, when someone in the group passes away, the impact on them is huge. But we can’t just let it be. We need to equip these support groups emotionally and psychologically so that they can deal with the issues and help women with ABC who really have not much of a support system at the moment,” says Dr Saunthari.
For women with ABC, the treatment goal is to control the disease and prevent it from progressing for as long as possible. It is also to enable patients to enjoy a good quality of life with advanced cancer.
Treatment options which include surgery, chemotherapy and radiotherapy are focused not on curing the disease but on shrinking the tumours and relieving symptoms of the disease.
“With the constant advances in medicine and new forms of treatments, women with ABC are able to live better for longer. A few years ago, a woman with advanced breast cancer would have six months or a year or two to live. But with the new treatments, things are changing and people are living with ABC for longer than six months or one year or two years,” she says.
Targeted therapies is one of the new forms of treatment that is being used for ABC.
Researchers are now able to identify and target different factors that cause cancer cells to grow and spread. These targeted therapies specifically act on these cell changes (compared to chemotherapy which attacks all fast growing cells) and as such, they have fewer side effects than chemotherapy.
Researchers are also working on a vaccine to treat ABC – unlike most vaccines that prevent infections, these breast cancer vaccines aim to boost the immune response against abnormal proteins and cause the tumour to shrink significantly.
While the vaccines are still in the early stage of research and development, targeted therapy is available here. However because they are still new in the market they are costly, says Dr Saunthari.
Another area that needs more attention is palliative care. The doctors and counsellors at NCSM talk about palliative care to even women with early stage breast cancer, mainly to create awareness of the importance of palliative care.
Most times however, the reception to palliative care isn’t warm.
“The moment we bring up palliative care, people assume that we are talking about the end and they immediately say that they are not up for it.
But palliative care is so important in giving patients and caregivers the psychological support they need. Palliative care also helps patients with pain management and helps caregivers understand the symptoms and side effects of the disease. If you get palliative care late, it becomes just treatment care,” says Dr Saunthari.
If things go according to plan though, things look set to change. NSCM is working with international cancer ngo the Union for International Cancer Control to gather more data on the needs of women with advanced breast cancer.
“We need to know what their needs are and how we can assist them before be can train support groups to help women with ABC,” says Dr Saunthari.
If you want to talk about cancer, call NCSM’s call centre at 1-800-08-1000.
This article was originally published at the “Article” source noted above and distributed by The Tutu Project for informational purposes only.