Through lumps and bumps: Breast cancer isn’t a battle fought alone

Fatigue. Hair fall. Nausea. Vomiting. The removal of an entire appendage from your person. Breast cancer patients have to undergo many changes in their bodies while being treated and with those changes often comes immense emotional turmoil — as they lose their hair, people begin to look at them differently, their loved ones sometimes leave them because of their illness and they have little support throughout it all.

Someone who hasn’t been through the trials and tribulations of breast cancer cannot begin to understand what a patient goes through, but what’s worse is that the patients themselves don’t have sufficient outlets for support. In a life-altering, often life-threatening journey, they are alone.

For women in Pakistan, battling breast cancer doesn’t just involve surgery and chemotherapy, it comes with another frustrating facet — fighting isolation and seeking support in a society where the disease remains a whispered topic. For many, the road to recovery is incomplete without a crucial element — emotional and psychological support.

Studies show that one in nine Pakistani women will be diagnosed with breast cancer at some point in their lives. Lahore’s Shaukat Khanum Memorial Cancer Hospital (SKMCH) estimates that 83,000 women in Pakistan are diagnosed with the disease annually. However, because there’s no national registry tracking the disease, we don’t know exactly how many women suffer across Pakistan. As a nation with one of the highest incidences of breast cancer among Asian countries, the question remains — what are we doing to provide support for these women, outside of the realm of medical treatment?

While familial support plays a major role in helping women heal and get through the ordeal, this support might not always be enough. Most caregivers aren’t trained to attend to patients emotionally and watching their loved ones go through a life-threatening condition might have adverse effects on them. Due to the stigma attached to breast cancer, many women suffer abandonment at the hands of their families and spouses — husbands getting remarried, or leaving them until they are ‘fixed’, or discouragement of mastectomies for reasons of vanity.

Having a dedicated support group, run by professionals trained to help patients, is very important. Patients gain strength from survivors’ stories and learn how to better take care of themselves. Simultaneously, if a group caters to caregivers, it provides them with a safe space for their emotions and helps them understand that they — like the patient — aren’t alone.

Support groups for breast cancer patients are crucial platforms where they can learn that they are not alone, Nosheen Qureshi, a psychologist who organises such groups at SKMCH, told Images.

According to the US National Breast Cancer Foundation, research shows that taking part in support groups, where you both give and receive help, is an effective way to reduce the stress and anxiety that accompany a diagnosis.

But despite these groups being so important for patients’ treatment and wellbeing, Pakistan doesn’t have a lot of them — particularly regular groups dedicated to breast cancer. There is a glaring lack of a national registry that directs patients to the few groups that do exist, such as the ones at SKMCH and Karachi’s Aga Khan University Hospital (AKUH) and Ziauddin Hospital.

Some patients treated at these hospitals told Images that they were not even aware of the groups’ existence. Upon finding social media pages for some of these groups, we discovered that they were not very active. How then is someone already going through such a difficult time in their life supposed to come across support groups?

To make matters even worse, hospitals that do offer breast cancer support groups often do so irregularly. Dr Adnan Jabbar, the head of oncology at Ziauddin and co-founder of AKUH’s support group, I Will Stay Beautiful, explained that after the Covid pandemic, meetings for breast cancer support groups became irregular. I Will Stay Beautiful — a volunteer-run programme on self-image enhancement for cancer patients — has not updated its Facebook page in almost two years, and it is unclear when its last session was.

Psychologist Qureshi said, however, that SKMCH holds support group meetings for breast cancer patients every Tuesday from 12pm to 1pm and while the numbers vary, she said 12 to 15 patients attend every session. She was unsure about the exact date the group was established but believed it was around 1999.

Oncologist Dr Yasmin Rashid, who practices at AKUH, believes I Will Stay Beautiful and the hospital’s head and neck cancer support group — both established in 2014 — were the first cancer support groups in Pakistan.

Although it is unclear when the first group was established, what’s more significant is that patients, even those recently diagnosed, are often unaware that there are support groups in place. Zahra Khan was first diagnosed with breast cancer in January, 2022. In 2024, her cancer came back. Through it all, she didn’t have access to hospital support groups. Her husband, Babar Sheikh, told Images that he was not aware that any support groups for cancer existed.

The case for support groups

Khusro Mumtaz lost his wife two years ago to a brain tumour. Four years before that, his sister succumbed to cancer. Throughout his journey, he felt the need for a support group, because while medical and financial help was available for patients, it was difficult to find emotional help.

All four oncologists interviewed for this story agreed on one thing — emotional and psychological support for breast cancer patients is necessary.

I Will Stay Beautiful was started for patients of all cancers but frequented by women with breast cancer, Dr Jabbar explained. He said the group was begun to help answer patients’ questions and as a platform to help patients meet others who had undergone similar treatment.

“Patients who had completed their treatment and were facing post-treatment issues would see a new patient and be grateful for being at a place where there procedures were over, so that would give them a positive vibe,” he said. Dr Jabbar added that doctors were often so busy with their clinic that they did not have the time to sit and talk each patient through the same thing and thought it would be better to help them in a group setting.

Dr Jabbar higlighted that when support groups were initially started, patients would not attend and the sessions would be empty. However, when he made the groups a mandatory part of their treatment, women realised that they were good for them.

“In general, people do not think going to a support group is going to be useful. So we need to raise awareness that when you go to these meetings, when you talk about your stuff, then only will you benefit from it, as opposed to ‘no, I don’t want to talk about my cancer. I’m not going to discuss anything. I’m already too tired. I don’t want to sit in these support groups’.”

SKMCH’s Dr Amina Khan explained that breast cancer survivors were a source of inspiration for other patients attending support groups because they presented a true picture of what to expect during and after treatment.

While meeting survivors could be helpful, newly-diagnosed breast cancer patients are often in extreme emotional turmoil. According to Qureshi, everything discussed about their diagnosis increases their distress and there is the looming issue of social acceptance. She highlighted that there is “a storm of emotion,” especially for those undergoing mastectomies because of the visible changes in their body. That, coupled with primary disease-related concerns and side effects like vomiting, nausea and hair loss — the latter keeping many patients from socialisation — may cause a person to feel a loss of self-identity.

Through this psychological upheaval, a patient wouldn’t always want to speak to their family members about it, for fear of overburdening them or fear of abandonment. What is most important to remember is that no one truly understands what that individual is going through because while caregivers go through a lot, it is not their life on the line.

Fauzia Khuhro, a breast cancer survivor and patient advocate, said that following a cancer diagnosis, “there’s a sort of depression, and […] you think that this is a death sentence”. She explained that a patient doesn’t necessarily want to burden family members who are already watching their loved ones suffer, however, in a support group, “there are other people who are like you, are going through the same emotions” which helps people open up.

“When you see somebody who’s already had cancer for 10 years, for example, and she’s looking absolutely bright and beautiful, you think, there is life after cancer.”

Khuhro highlighted that another advantage of breast cancer support groups was that they helped bust myths, especially for newly-diagnosed patients. If someone does not want to “have a biopsy because she thinks her cancer will spread… [but] we have already gone through it and speak about our experience which encourages them.”

She said that newly-diagnosed patients often don’t know where to get help and spend months between their oncologist appointments with no one to talk to. Therefore, for everyday questions, people started reaching out to Khuhro and she started responding. She narrated a story of a woman she spoke to from a village who was on the verge of committing suicide and in a “fantastic note” after, the woman said Khuhro changed her life and sounded lively and positive.

“I just felt that, okay, there is life after cancer. She can do it. I can do it. When I repeat my story, it gives me strength.”

According to Dr Rashid, “support groups have a huge impact as we have observed,” especially when newer patients interact with survivors, learn from their firsthand experiences and have their fears addressed. She said participants within a support group “become like family”.

This found family truly understands what patients are going through on a daily basis and by caring and sharing similar experiences they can help women feel less alone.

Hijab Malik was diagnosed with breast cancer at 28. She did not have any support groups to guide her through the harrowing journey. However, she found a community in people speaking about breast cancer online, particularly on social media, who helped her with what to eat and how to navigate her emotions.

“It’s an emotional rollercoaster because this is somewhat of a loss. You have to grieve and come to terms with a lot of things, including bodily changes during chemotherapy,” she explained. A support group, she said, would’ve been a useful forum where patients could voice their concerns and know that they are not alone.

“Especially with breast cancer, there is so much stigma surrounding it, and then when you have it as a single girl, people are not open to talking about it.” Malik explained that during her treatment, other patients would often say that they do not talk about their diagnosis or tell other people about it, whereas she questioned why people were shying away from discussing a “God-given illness”.

“We move around in a society where people discourage you from talking about it [breast cancer], but what you go through changes you. A support group would’ve helped.”

Malik said that her “rock” throughout the process were her friends and family.

Zahra Khan documented her journey on her Instagram page, Hey Breastie. However, this has not been easy.

Khan told Images, “It’s been very overwhelming, to be honest. It helped me but it made me very nervous.” She highlighted that she does not post much now, especially after her relapse, because she worries about accidentally putting out wrong information or something happening to a patient who follows her advice.

“I just have a lot on my conscience, which makes it tough for me to post, but I do want to get back to posting because a lot of people want to know what’s happening with my updates. But it’s tough to put yourself out there.”

Khan’s conundrum emphasises the need for professionally led support groups, where one individual — who is also a patient — isn’t solely responsible and burdened.

The role of families

In South Asian culture, families are often the immediate support group for women. However, for patients with breast cancer, the script is often flipped. Dr Abida Sattar, an oncologist at AKUH, said that because of the guilt and shame associated with the disease, women will often not report if they feel a lump, and if they do report it, there are many other hurdles they may encounter.

“Majority of the women who live in areas where they may not have access to education, who may not be able to make their own decisions, may face social hurdles, like the husband, sometimes the mother-in-law or father-in-law.”

With breast cancer, a prevalent issue for patients — and often their spouses — is body image. Dr Jabbar said that women faced pressure from their husbands, and sometimes their in-laws, to avoid mastectomies. He spoke of a specific instance where a patient’s father-in-law did not want her to get treatment and forced his son to prevent her from receiving the required medical care.

A woman’s entire personhood then rests on an appendage that is riddled with disease. Dr Sattar narrated an incident where she broke the news to a young woman in her 30s and her family that she had breast cancer. “The first thing out of their mouth was, ‘What will her in-laws say?’ They never brought that girl back for treatment. If they did not treat her, she would have died by now, but I never saw her and that was because of fear.”

Gender also plays a role in cancer patients’ access to healthcare. Dr Jabbar, while working on the AKUH neuro-oncology registry, discovered that men were more inclined to come for treatment compared to women. He highlighted that women were often dependent on their husbands or fathers to bring them to the hospital, whereas it was easier for a man, adding that women often have to bring their young children with them to their healthcare provider.

Additionally, there are perils to the advice offered by family members, including doctors, that can be disadvantageous to a patient. From husbands who don’t allow their wives to leave home because of fear of nazar or evil eye after how well their surgery went, to relative doctors who offer advice despite not being oncologists, Dr Sattar had one piece of advice for patients — “I tell them routinely, you have two ears. It should be going in through one and out the other.”

“Even though they may be well-meaning, they may be ill-informed so they may end up saying irrelevant or untrue things that will be a source of worry and concern for the patient.”

Family members or other caregivers can sometimes influence the patient to feel a certain way, Dr Khan said. In such cases, SKMCH safeguards the rights of the patients by ensuring that they are the primary decision makers.

“In our culture, especially for older patients, everybody suddenly becomes very protective, and what the patient wants can sometimes get lost in the echoes around them. However, in our set-up, we eliminate the peripheral people, if the patient is an adult, and try to have a one-on-one communication with them.”

Qureshi said sometimes their support group observed women’s partners abandoning them, leaving them at their mother’s home until they recovered, or getting remarried. “The lack of support from the spouse is a strong reason they are stressed.”

Such incidents of abandonment often stem from taboos and stigmas that run rampant in Pakistani society — false narratives like a woman has breast cancer because she is immoral or won’t be able to give birth, won’t be able to breastfeed and will dwindle into a purposeless nothing because of her disease. Support groups, especially those catering to caregivers, help raise awareness and separate fact from fiction.

However, Qureshi also emphasised that within the Pakistani culture, there was a lot of other support available for breast cancer patients. Dr Jabbar spoke of mothers-in-law bringing in patients when their spouses did not want to, thus the presence of families can be positive, and patients whose families are supportive tend to recover better.

“We see patients for 15 minutes, 30 minutes maximum, and then for the rest of the week, they are with family members. [Therefore] family support is very important,” he said.

Sukaina*, who was diagnosed with breast cancer at 41, revealed that she never attended any groups because her friends and family were her primary support system. She reached out to her friends for help and they immediately came to her aid, for example picking and dropping her children from school.

She underscored the possible negative aspect of support groups because an individual’s diagnosis and treatment regimen were different and could be confusing for others. However, she said that support groups could be helpful because women with breast cancer often need “assurance and reassurance” regarding the physical transformations caused by radiation and chemotherapy. She said positive reinforcements would benefit a lot of patients, particularly those facing hair loss and bodily changes.

Proper support groups, run by professionals, are necessary even if a patient has a supportive family. According to Dr Jabbar, caregivers who attended I Will Stay Beautiful sessions were taught how to support their wives, daughters and siblings.

In many Pakistani households, the woman is often solely responsible for cooking, cleaning and other chores. Through support groups, their family members can better understand what they are going through and learn how to be more nurturing through hearing about the lived experiences of other caregivers.

While families and friends can provide some informal support, they often don’t know which lines should not be crossed and sometimes make unnecessary comments or suggestions. After spotting that, and the glaring lack of support groups, Mumtaz started Humsafar, a cancer support group for people with different forms of cancer, and of different ages. Humsafar runs two support groups simultaneously, one for patients and survivors, and the other for their caregivers, allowing both groups to speak freely without the fear of burdening the other.

Through efforts like this, a breast cancer patient’s family can be better equipped to assist them, thereby aiding their recovery, while also having their own safe space.

Changing attitudes

Negative attitudes towards breast cancer are gradually changing with the help of awareness campaigns. Dr Rashid lauded former first lady Samina Alvi for working towards breast cancer awareness.

“She ensured that October was celebrated nationally and personally led the campaign for awareness. In the past three years during her tenure, you would hear automatic breast cancer awareness messages when you made a phone call. That had a huge impact,” she said. However, this year, the automated message is missing.

Aggressive campaigns and awareness through institutes at grassroots, schools, and corporations have helped, Dr Rashid said, adding that survivor stories showed a visible change in patients’ attitudes.

Dr Sattar maintained that while it was difficult to quantify the change in attitudes, there was definitely a slight change, owed partly to awareness activities conducted in October. She cited a study conducted on 10,000 women in Dadu, which she was now conducting in Gilgit Baltistan and Skardu, wherein local healthcare workers — particularly women from the same communities — are taught to conduct physical exams to try and identify lumps in the breast. The lady health workers then go door to door to conduct checks in an effort to downstage cancer and detect it early.

“The fact that women are actually allowing us to do this tells me there is an understanding that this will actually help them. So, yes there has been some improvement.”

Social media

Another salient platform for raising awareness and providing a sense of community for breast cancer patients is social media. Survivors and patients often take to Instagram to share their journey and help others.

One such example is Khan of Hey Breastie. Through her page, she detailed her own battles and simultaneously helped thousands of Pakistani women. In her video series Face2Face, she discussed what it meant to be diagnosed with stage four cancer and encouraged patients to advocate for themselves.

While a lot of her posts are flooded with encouragement from her followers, some content, where she shows herself undergoing treatment, are filled with questions. Women ask if radiation is painful, if she was allowed to be covered during the procedure, and talk about their own fatigue. Scrolling through the comment section, one can see Khan carefully replying to most queries — “While it’s [radiation] happening, not at all. You don’t feel a single thing” or “The fatigue definitely is bad. I was supposed to do a stall at a market that I really wanted to do, but realised I need to put my health first and cancelled the whole thing :( but you do what you gotta do.”

Khan said that she never attended a support group nor did she know of any. “There was a WhatsApp group that I was part of but no one spoke about anything at all. It just felt a little alienating speaking on it and there was no point. It’s because of the taboo that exists — no one wants to talk about their experiences, no one wants to talk about what’s happening, no one wants to talk about hard issues that people want to know about but just won’t talk about.”

Due to the lack of support groups in Pakistan, Khan joined international groups on Facebook, which she maintained were very helpful. She said people from all over the world spoke a lot, and that there was a lot of engagement and information which would encourage her to ask questions. “It was super informative. Very helpful.”

What prompted Khan to start her own group was that she had no one to turn to, except a friend living in Saudi Arabia who also had breast cancer and started a page.

“I remember referring to her page through every step of my journey. I was already documenting my journey on a private account and I realised people who did not have cancer were so involved, so imagine if I opened this to the public where women who are going through any kind of struggle — breast cancer, other cancers — can follow me and get some kind of information, motivation, anything of that sort.”

In an earlier conversation with Images, Khan said spoke about the importance of support groups and community in general when one is going through something as intense as cancer. She said, “It’s the most important thing because it made me have a different mindset.”

This is why Khan is using her platform on Instagram to create a space for women where they can discuss things freely and openly.

Similar pages on Instagram include Sadaf (pink.warrior101), Moizza Rauf (i.pink_i.can) and Nashmia Butt (yourbreastfriendnash), all of whom share their personal journeys, bust myths and help raise awareness. By sharing their experiences, these women provide comfort and practical advice, helping others navigate similar challenges. The interactive nature of social media creates a sense of community, where followers can ask questions, share their struggles, and find reassurance from someone who truly understands.

Through this tremendously difficult time, it is very important for women suffering from breast cancer to find and make substantial connections. These connections, which could be found through breast cancer support groups online or at hospitals, not only provide emotional help but can aid a patient’s recovery. By encouraging sharing experiences, these groups can foster a sense of community and understanding that is invaluable in navigating the inevitable challenges a patient will face.

The solidarity built from these support groups can also empower women with breast cancer to face their journey with greater resilience and hope.

Cover image generated by AI

*Name changed to maintain anonymity