Breast Cancer in the Muslim Community: Challenges and Opportunities
BySamana Siddiqui
Sound Vision
When Nazli Hussain was diagnosed with an aggressive form of breast cancer in the summer of 2017, it was barely weeks after a Muslim friend had asked why she even bothered getting mammograms every year.
“It’s good to know before instead of not knowing and then you can’t have anything done about it,” the Chicago native explained in an interview with Sound Vision. She said she keeps up with not just mammograms, but other health-related tests recommended annually for women, like pap smears.
According to the American Cancer Association, a woman living in the US has a 12.4%, or a 1-in-8 lifetime risk of being diagnosed with breast cancer. The organization notes that early detection of breast cancer, when it’s small and has not spread, is easier to treat successfully. Getting regular screening tests is the most reliable way to find breast cancer early.
Overall, breast cancer is the second leading cause of cancer death among American women, and screening mammography is a proven method to reduce mortality from this cancer.
Because Hussain’s cancer was aggressive, doctors acted quickly. One month after her diagnosis, she had a double mastectomy (removal of both of her breasts), followed by one year of chemotherapy. At this writing, she is cancer-free.
She said breast cancer strengthened her faith.
“I didn’t expect it, but to be honest with you, I wasn’t surprised because I thought it was meant for me,” she said. “I took it like any other illness. I knew that insha Allah I would recover.”
“I felt that Allah only gives you what you can bear,” she added. “So that was my weapon. And Dua.”
Dr Tamara Gray is Executive Director and Chief Spirituality Officer of Rabata.org. She said that from the Islamic perspective, there are benefits to breast cancer, and illness in general.
“The beauty of it is that it gives us the opportunity to assess, reassess and think deeply about our life here on this earth, and whether or not we are walking on the path that will find us the most happiness in this world and the other world,” she said. “There is blessing in this diagnosis, in the clarity of life.”
Muslims and mammograms
The benefit of mammograms in detecting breast cancer early and saving women’s lives is clear, as Hussain’s experience illustrates. However, the attitude of many Muslims, like her friend who wondered why she even bothered with the annual procedure, seems to be more prevalent in the Muslim community.
Dr Aasim Padela is Director of the Initiative on Islam and Medicine at the University of Chicago. In 2012, he and his team, in partnership with local Muslim organizations, embarked on a project that researched mammogram use among Muslim women in Chicago and Detroit. This was followed by the development of a religiously-tailored mammography education program for American Muslims.
Based on community surveys, they found that 37% of the 254 Muslim women surveyed in the Chicago area had not obtained a mammogram in the previous two years. In Detroit, 42 percent of the 365 women surveyed reported not having a mammogram every one to two years.
This is in line with broader statistics that found that in 2015, while 65.3% of US women above the age of 40 had a mammogram, lower rates were observed among racial and ethnic minorities.
Dr Padela and his team developed a workshop that educated Muslim women about the importance of mammograms and screening. It was offered at two separate mosques in suburban Chicago. Each session included discussions led by trained peer educators, as well as lectures by religious scholars and female physicians about mammography, screening guidelines, religion and health, as well as resources and access for breast cancer screening.
Fifty-eight participants completed the workshop, 29 of whom had never received a mammogram, and 27 who had not had one in the two years previous.
One year later, when surveyed, 38 percent or 22 out of the 58 had gotten a mammogram.
Overall, the women reported being much more likely to get a mammogram than they had been before attending the workshop.
The issue of modesty
Worry about maintaining modesty during a mammogram was one reason Padela and his team found that some respondents did not want to have one.
“Mammograms feel so exposing,” Gray explained. “I think a lot of women are also afraid because of jokes about pain and squeezing (during the procedure). Wherever there’s fear, lack of willingness to get it done.”
However, Padela also found that once workshop participants understood the necessity and urgency of breast cancer screening, concerns about modesty did not stop them from getting a mammogram.
Discrimination affects returning for mammograms
One disturbing finding was that the Muslim women surveyed did not return for mammograms if they experienced Islamophobia during an initial one.
“We found religious discrimination to affect behavior," Padela said.
A paper about the study noted that perceived religious discrimination did not seem to affect getting a first mammogram. But it did seem to play a role in a Muslim woman returning for a mammogram on a biennial basis.
Role of the community in breast cancer awareness
As Padela and his team’s research makes clear, community health education plays a role in encouraging Muslim women to get potentially life-saving mammograms. However, he says not enough is being done.
“Our community is decades behind, so to speak, in creating a culture of health,” he said. He noted that a number of churches have “health ministries” that focus exclusively on helping congregants learn about and maintain their health and well-being. There is nothing equivalent in most mosques and Islamic centers, where even Khutbas, for example, are not focused on health or the connection between spirituality and health.
Gray agreed.
“Do our mosques have pink flags hanging outside of them?” she asked. “As a larger community, we don’t have open house fairs, we don’t have breast cancer awareness.”
Gray offered other ideas for Masjids, Islamic centers, and Muslim organizations, like getting involved in fundraising walks for breast cancer, hosting dinner or movie nights with a woman doctor focused on breast cancer awareness, offering coupons for mammograms, and hosting mammogram parties, where women are encouraged to get their mammograms done one month, followed by a free lunch or prize the following month for getting it done.
“We need to be creative in how we do this,” she said.
However, she added that it is not enough to just encourage women to get mammograms. Post-diagnosis support in the form of prayer circles for those who have tested positive for cancer, as well as support groups, are essential as well.
The role of spirituality and staying positive
“To go through this journey you really have to have a positive attitude,” Hussain advised.
“Never have self-pity. Be strong from the start. Be a fighter and fight your own battle. Have a positive attitude and insha Allah your journey will be smooth.”
Specific acts of worship also help patients cope with breast cancer.
“There are two pieces of spiritual advice I give people going through trials, especially any kind of illness, even infertility, or physical trial,” said Gray. “The first one is to get up at night and do the prayer of need at Tahajjud time. This is the Dua that has great power.
“The second is Sadaqah, specifically Sadaqatul Fajr (giving charity at Fajr time). Scholars say it lifts trial. It means you’re giving money at that actual time. What that money does is that the person receives it at the beginning of the day.
“Along with that is any sort of large sum, something that is significant for the person,” she added. “I would also suggest reading lots of Qur’an. It is a healing. It says this in the Qur’an,” she said.
Gray said illness can open up new ways of connecting to God. She gave the example of one of her students who had been diagnosed with breast cancer.
“She did so many new things for herself in the world of spirituality, things that she hadn’t done before,” Gray said. “New phrases of praise, new ways to connect to Allah outside of those that had been typical to her in a state of health.”
The psychological challenge of mastectomies
Mastectomies, the surgical removal of one or both of the breasts to treat breast cancer, like the one Hussain had, can be especially traumatic for some women.
“So many people define womanhood by how our bodies look and our faces look,” noted Gray. The effect on a patient is that “she begins to feel like less of a woman.”
Gray said that in cases where a mastectomy needs to be performed, patients should remember the relationship between the soul and the body. “My soul is myself. My body is only on loan for a period of time.”
“If the body is not doing well, the soul can still be strong and become even stronger even as the body becomes weaker with treatment,” she added.
How family and friends can help
“Alhamdu lillah, I was very lucky that my family, friends and everyone was making Dua,” said Hussain. “That also kept me going.”
This kind of spiritual support is just one of many ways Muslims can assist someone diagnosed with breast cancer.
Gray advised others to, "Respect the patient and follow the lead of the patient in terms of what she needs. Look for how to be a practical help. Be as aware as much as you can of where a need is”.
Gray also encouraged regular visits.
“Make an effort,” she said. “It is part of our Sunnah to visit the sick and to stay for a short time. Don’t go there and be a pain. Don’t make it so that it’s so hard to go. Pop in with nothing. Don’t feel you have to go with something.”
Even if physical visits are not possible, she urged family and friends to “visit” via phone calls, WhatsApp and other ways to stay in touch.
She emphasized that while some people are afraid upon hearing about a cancer diagnosis and disappear, they must face up to this and offer support.
“Often, they’re afraid to do or say the wrong thing,” she said. “It’s okay to do or say the wrong thing and say you’re sorry. But do something,” she emphasized.
Hussain recovered from her breast cancer, but remains vigilant about keeping up with tests and doctor appointments to keep an eye on any recurrence of cancer. “I enjoyed the journey,” she said of her illness. “These were stages I had to go through so why cry or get upset?
“I would never wish anybody should get it, but if you do, have faith and believe in Allah and He will walk you through it. I did Alhamdu lillah.”
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Dr Azra Raza: An Oncologist Asks when It’s Time to Say ‘Enough’
By Henry Marsh
Throughout my career as a neurosurgeon, I have worked closely with oncologists. Many of my patients have cancer of the brain — one of the deadliest of the near-infinite number of cancers. I have always viewed my oncological colleagues with complicated, contradictory feelings. On the one hand, I’m in awe of their work, which can be so emotionally demanding. On the other, I suspect they don’t always know when to stop.
There’s an old joke in medical circles: “Why should you never give an oncologist a screwdriver?” The answer: “Because they will open the coffin and carry on treating the patient.”
Azra Raza, an oncologist at Columbia University, vividly illustrates this tug-of-war in her book “The First Cell: And the Human Costs of Pursuing Cancer to the Last.” It is, in many ways, a cry of protest against the disease that killed her husband (also an oncologist) and, over time, most of her patients. When it comes to cancer, Raza knows firsthand how hard it is to reconcile compassion with science and hope with realism.
She asks hard questions: “Why are we so afraid to tell the stories of the majority who die? Why keep promoting the positive anecdote? Why all this mollycoddling?” She says the time has come to think about the “ghastly toxicities of therapies” that often achieve so little. And she intersperses an impassioned argument about the ineffectiveness of current cancer medicine — at least for most patients with metastatic disease — with descriptions of the suffering of her husband and some of her patients (who are identified by first name, with photographs). By describing this suffering, Raza says, she hopes to jolt people into looking for a new paradigm in the so-called war on cancer.
Raza documents the failure of chemotherapy to help the great majority of patients with metastatic disease, and the immense cost and suffering involved. She castigates pharmaceutical companies (as have many others) for concentrating on drugs that often fail and at best achieve, on average, a few extra months of life. She quotes research that in the United States, over 14 years, “42.4 percent of the 9.5 million cancer cases had lost all of their life savings within two-plus years.”
Raza also accuses research scientists and her fellow oncologists of “unshakable hubris, convinced as we are that we possess the power to untangle the intricacies of as complex a disease as cancer.” She dismisses much current research with the comment that it is “pure arrogance” to think the problem “can be solved by a few molecular biologists”; research, she says, should be based on studying humans, not mice. She goes on to say: “Our lives are at stake. Our future is at stake.”
Cancer is overwhelmingly a disease of old age, even though ads for cancer charities invariably show pictures of children and young women. It is worth noting that most of the patients whose stories Raza recounts are relatively young as well. She writes, “An effective treatment for cancer can only be developed essentially after we understand how life works, how we age, since aging and cancer are two sides of the same coin.” Fine words, but the reader can be forgiven for feeling that they smack of the same hubris afflicting those molecular biologists, toiling away in the lab with their mouse models.
So what is the answer? Raza suggests the first cancer cell that gives rise to a tumor is like a grain of sand that precipitates the collapse of a sand pile. Research, she says, should concentrate on finding these early changes, before an actual tumor develops. There is research going on along these lines, but Raza argues that its funding is insufficient compared with the resources being poured into new drug development.
A “quantum leap” is required, and this will involve “genomics, transcriptomics, proteomics, metabolomics; indeed, panomics.” It will also involve smart bras and special toilets — real-life technologies in various stages of development, she assures us. I am in no position to know whether these technologies represent a paradigm shift in the treatment of cancer, or whether they are akin to the magical thinking that geoengineering will save us from the unfolding apocalypse of climate change, or to the gullibility that gave rise to the Theranos scandal.
At the heart of “The First Cell” is the problem of knowing when to stop treating patients who have incurable cancer, especially in the elderly. Raza recounts the case of “Lady N.,” whose cancer becomes untreatable (not just incurable) after years of chemotherapy. She is placed on a ventilator and treatment continues until her 101-year-old mother pleads for it to be stopped. Raza writes, “What I know beyond a shadow of a doubt is that to intubate her … was the worst possible thing to do to her.” She tells us that she was forced to give the patient the choice of ventilation “by the law, of course.”.
I sympathize with Raza. I’ve had patients with slowly evolving brain tumors. I got to know them well; we became friends. I had guarded conversations about their future — trying to provide hope, but not too much hope. On several occasions, I operated yet again when I should not have done. This was not because the law dictated that I give my patients a choice, but because it was so unbearably painful to spell out the truth to them.
Often, there is a little fragment of hope, if only for a few more weeks of life, as medicine is almost always about probabilities rather than certainties. Patients hope they will be statistical outliers, one of the minority who “do well.” This can all too easily lead to a folie à deux between doctor and patient. And in a country like the United States — with its optimistic culture and commercially driven health care system — this all too human weakness can, and does, lead to grotesque overtreatment of very sick people.
“The First Cell” raises many profound questions but fails to provide clear answers. What is abundantly clear is how deeply Raza cares for her patients. Her diagnosis of the ills from which cancer treatment suffers strikes me as accurate, but her solutions seem infused with the same unrealistic optimism she identifies as the cause of so much suffering. Time will tell, but as they say, America is the land where death is optional.
(Henry Marsh is a neurosurgeon and the author of “Do No Harm” and “Admissions.”)
THE FIRST CELL
And the Human Costs of Pursuing Cancer to the Last
By Azra Raza
Illustrated. 368 pp. Basic Books. $28.
- The New York Times
