October is breast cancer awareness month. This week You! exposes stigmas, attached to breast cancer. Read on...
Cancer is inherently unfair in the way it wreaks havoc on one’s body and mind. It can be a spectre of devastation or hope for everyone witnessing the journey. This year, I had my heart-broken because of breast cancer returning in a familiar face, and had my heart filled with hope and strength from a survivor’s journey of living cancer-free for 15 years.
Cancer is not one type of disease. There are over 200 different types and even breast cancer has different features and variations. Essentially, breast cancer is when cells in your breast begin to grow uncontrollably. Some types are worse than others, such as triple-negative breast cancer which is more aggressive, has fewer weaknesses meaning fewer treatment options, and has higher chances of recurrence.
It is important to remember that cancer is curable and some of the unfairness around it is constructed by our society and our systems that create barriers around access to diagnosis and treatment. If we have to beat this monster, we need a holistic strategy that addresses the physical as well as the psychological aspect to promote early detection and access to treatment in a timely manner. Early detection is critical in saving lives and for this reason, the WHO Global Breast Cancer Initiative (GBCI) advises countries to focus on stage-shifting so that we can increase the number of patients being diagnosed in stages 1 and 2 to at least 60 per cent and this along with the other pillars of early diagnosis and complete treatment, GBCI strategy gives us hope to reduce breast cancer mortality by 2.5 per cent per year, saving 2.5 million lives in the next two decades.
A cancer diagnosis is generally shocking, but it feels even more so when it is in a familiar face. Someone around my age who was in the same batch in university as me, was diagnosed with stage 2 breast cancer in 2022. She had treatment that comprised surgery, chemotherapy, and radiation therapy in Karachi. Recently, when she was about to celebrate her two-year cancer-free anniversary in August, she found out the devastating news that her cancer had returned, and it was stage 4. Imagining the ordeal of having to prepare yourself once again to fight, with all the uncertainty, was truly heart-breaking. At the same time, it’s a realisation that being a cancer survivor is not always a definitive end-point; every minute you are breathing, you are a survivor.
The disease itself is challenging and the stigma in our society makes fighting it even more difficult.
I had the opportunity to have a conversation with two breast care nurses who have spent decades of their lives caring for breast cancer patients in Pakistan. They shared valuable insights regarding social stigmas, misconceptions, and a host of other challenges that breast cancer patients face in our country. A lot of the problems stem from perceptions and attitudes of men in our society towards women in general, as well as about irrational misconceptions about cancer -as if it means death, mastectomy means a woman is no longer a woman, and that cancer is contagious. Here are few examples from real life situations:
• Her husband said, “Instead of spending on your treatment, I’d rather marry again.” Taking away her two children from her and not letting her meet them. She had to go to her mother’s house to start cancer treatment.
• She was in her 50s from a village, put in a storeroom by her son who kept her utensils separate and left food outside the room.
• She was living in a joint family system who was facing difficulty in arm movement after mastectomy and removal of lymph nodes and despite that, her in-laws wanted her to work, saying, “We’ve spent so much amount on you and you still can’t work?”
• She fought with her doctor to stop her chemotherapy because her husband said, “you can no longer have children and I’ll marry another woman” (despite the fact they already had children.)
• Patients are asked to avoid intimate relations with their husbands during chemotherapy because immunity is low so to reduce the risk of getting ill from STDs. Since discussions on intimate relations remain a taboo, she found the courage to ask a nurse after two long years if she could be with her husband. This inspired the nurse to undertake a research study on sexual issues in married women with breast cancer.
• She is from a well-educated family. After two appointments with the oncologist, her husband left her saying, “I can’t spend any more on you. You are on your own.”
• She is engaged, and they requested the doctor to wait for a month and start treatment after the wedding. He stuck with her. On the first chemo, she had mehndi on her hands. (It is important to point out here that there are supportive husbands as well.)
A story of absolute resilience
Fifteen years ago in 2009, T* was diagnosed with a difficult type of breast cancer (triple negative, grade 3.) She was a nurse in ICU but didn’t perform breast self-exam and only noticed a swelling when she was playing with her two-year old son, who was jumping in her lap. Her husband was a heart patient and she was the sole bread-winner in the family. For her, more than fear of her life, she feared losing her new job. She never stopped working during her treatment. Due to a lack of formal policies for employees with cancer, she had to face certain challenges professionally. During surgery (lumpectomy), chemotherapy, and radiation, she was performing her work duty. Her in-laws were not supportive either. One day, she requested her sister-in-law to send her daughter with her for chemo and she refused citing a myth that what if her daughter ‘caught’ cancer. That was a miserable period for her. With a young boy who had to be sent to a day care, office work, as well as work at home, the journey was challenging but she demonstrated great resilience. Finally, her treatment was completed after one year. Cancer takes a mental toll even after treatment is finished. There was like a bell ringing at the back of her mind for five years - what if it comes back. But she did not let cancer dampen her spirits. Only a few months after finishing treatment, she applied for a two-year diploma in oncology nursing to contribute positively and help other women fight breast cancer. She never thought that she would not survive or that cancer was a hindrance in what she could achieve. “I have forgiven all those who were unkind to me and I ask Allah to forgive me in lieu of this.” Later, she also completed a bachelor’s in nursing oncology. Her son is in second year of FSC now. What gave her courage? Her son, her faith, and seeing other patients with a smile on their faces. She still remembers what her breast care nurse told her: look towards the nine people who are supporting you and not the one who is saying negative things.
Her message is that don’t pity cancer patients - make them stronger and respect their work.
Hers is a powerful story of resilience against not just the disease physically but also the stigma and misconceptions that add a layer of challenge but also how these can be overcome and how survivors can integrate back into the society to contribute positively.
I would like to take a moment to appreciate all those who believe in building systems to challenge the cancer beast in our country. In Pakistan, as a low-middle income country, there are unique challenges to manage cancer but despite the odds, we have seen successful models of tertiary care hospitals, starting from Shaukat Khanum Hospital from 1994, providing equitable treatment irrespective of a patient’s paying power. There is a need to build and strengthen an ecosystem against cancer in our country. One important step is to expose and address stigma to build hope and save lives. We need to remember that behind every woman is a beating heart that was broken multiple times and suffering that could’ve been avoided if the society was empathetic and more aware about breast cancer.
*Name withheld to protect privacy.
The writer is a LUMS alumna and a community social worker with special interest in public health, philosophy, and human rights. She can be reached at mariamk27@hotmail.com.
Her X handle is @mariamibkhan
