The unspoken scars of breast cancer survivors in India

“Would it not be weird if I didn’t have breasts?”

Dr Lakshmi Radhakrishnan was pleased when a patient asked her this question earlier this year. It was the first time she had been asked it since she started working at the All India Institute of Medical Sciences, Delhi, in January 2021. Radhakrishnan is pursuing an MCh, a super-specialisation postgraduate degree in surgery, focusing on breast and endocrine surgery, and the patient in question had just been diagnosed with breast cancer. Very few of Radhakrishnan’s earlier patients had initiated a conversation about their future beyond their treatment for cancer.

It was a familiar problem. Throughout Radhakrishnan’s senior residency, at Thrissur Government Medical College, Kerala, she did not come across a single patient who returned for breast reconstruction surgery after undergoing a mastectomy, an operation to remove a breast. This despite the fact that breast cancer is the most common kind of cancer in the country today. “On days that I had duty, at least one case out of three to five cases we saw was a breast cancer case,” Radhakrishnan recalled. Many of these patients were under the age of 40.

“Women usually never bring it up,” Radhakrishnan said. “So when someone initiates the conversation, it feels very good, because the more women speak about it, many more will choose the option of reconstruction.”

It was to address this gap in the conversation and treatment that Radhakrishnan chose to specialise in breast surgery. Typically, an oncologist oversees treatment for a breast cancer patient, including radiation, chemotherapy and surgery. In some cases, they may involve a plastic surgeon at a later stage, to offer reconstruction to patients. In contrast, Radhakrishnan was drawn to the specialised work of a breast surgeon, who handles all the necessary treatment for breast cancer, from chemotherapy and radiation, to surgery to remove cancerous tissues, as well as to conserve or reconstruct the breast.

In large part, women don’t bring up the question of reconstruction simply because they are not aware of it or don’t clearly understand it. According to a 2012 study conducted among educated women living in Mumbai, only 24% were aware of reconstruction options after treatment of breast cancer. A study conducted in 2021, found better general awareness – 51.01% of the women were aware of options of breast reconstruction. But only 23% of the women were aware of the fact that their breast after surgery and reconstruction would appear similar to the opposite breast. And only 19% knew that the unaffected breast could be operated upon to acquire good cosmetic results.

This low awareness stems, in part, from the stigma associated with breast cancer. “Even today, when I ask educated breast cancer survivors to give talks about their experience, they refuse,” said Dr Somashekar SP, a surgical oncologist at Bengaluru’s Manipal Hospital. “It is the same with some celebrity patients as well. Nobody wants to be associated with breast cancer.”

But though few women know about and opt for reconstruction surgeries, Radhakrishnan explained that the loss of breasts can have serious implications for women’s health.

“Whether it comes to personal relationships – with their spouse or generally in society, women are psychologically affected by the changes they see in their body,” she said. “Societal and family pressure does cause women to lose confidence or become insecure.”

A study conducted in 2020 in Ghana analysed the psychosocial impact of mastectomies on female breast cancer patients and found that most of the patients had been adversely affected psychologically and emotionally by them. Among the participants, 56.7% said that they felt “less feminine”, 71% reported they experienced “psychological distress” as a result of their mastectomy, while 63% of them reported “loss of self-confidence”. Fifty-eight percent of the women admitted that they felt “treated as outcasts by society”.

Closer home, a 2017 study conducted at a hospital in Rajasthan, which analysed the quality of life among 240 patients who had undergone mastectomies for malignant breast lesions, found that psychological health was good for only 31% of patients, average for 48% of patients and poor for 18% of patients. In 2016, a study was conducted among 160 women from central Kerala who had undergone mastectomies. Among these patients, 32% patients were found to have psychiatric problems, such as adjustment disorder, major depressive disorder and anxiety disorder.

Vasanthi Rao, an art teacher and an artist based in Bengaluru, experienced the psychological distress associated with the disease after she was diagnosed with stage one breast cancer in 2010, at the age of 59. Soon after, she underwent a lumpectomy, a procedure in which the tumour and surrounding tissues are removed.

Rao had steeled herself for the physical pain that came with the treatment, including pain that was a side effect of her medicines. What she hadn’t anticipated was the psychological effects of the surgery.

“Nobody told me how differently I would look and feel after the surgery,” Rao said. Her breast size was 40; today, the cancer-affected breast is 32. “If I had known that there was some way to make both the breasts the same size, I would have definitely chosen that option,” she said.

But Rao wasn’t ever offered a breast conservation or reconstruction surgery. “The point is that I was already in so much pain,” she said. “One more cut on my stomach or elsewhere on my body would not have made any difference to me. They could have just done it all at one go and it would have healed at the same time.”

Today, when she wears a saree or a salwar kameez, she is able to hide her chest, but when she wears western tops or t-shirts, she feels uncomfortable. “I felt terrible about it,” she said. “As a woman of course, the way we look is important to us, so it did affect me quite a bit.” She occasionally wears special padded brassieres, but said that these weren’t easily available.

A few months after she was declared cancer-free, she raised the problem with her doctor, who is widely considered one of the best in the field in Bengaluru. “I was very angry with the doctor because he had not told me how vastly different my breasts would look,” she said. “When I demanded to know why he had not explained to me in advance how to prepare for this outcome, he simply smiled. He didn’t say a word.”

In the case of Sandhya Joseph (the names of patients other than Rao have been changed to protect their privacy), a 52-year-old schoolteacher from Bengaluru, doctors did suggest breast reconstruction surgery, but did so at a time and in a manner that did not allow the family to make a considered decision. Joseph explained that her doctors had made no mention of the option during her diagnosis, or at any point leading up to her breast removal surgery. After the three-hour surgery was done and Joseph was still lying unconscious on the operating table, the doctors approached her nervous daughter, an only child, waiting outside.

“They just came to me and said the surgery was successful and asked if they should do the reconstruction surgery next,” Joseph’s daughter said.

“I was still anxious over my mother’s condition and it was a decision that she had to take. I could not decide for her at that point, so suddenly.”

She felt that the doctors “were not at all sensitive to the situation or the fact that it was such an odd time to bring it up.” Her mother never ended up getting the surgery.

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There are many reasons why women hesitate to opt for breast reconstruction surgery.

Jnaneshwari Jayaram, another MCh student in the same department as Radhakrishnan, said that often women are so overwhelmed by the long-drawn process of cancer treatment that they feel they do not have any energy left to undergo breast reconstruction surgery. “The surgery, chemotherapy, radiation – the entire treatment takes about six months to a year,” Jayaram said, “Many women want to complete the treatment and walk out of the hospital.”

A 2017 study conducted at “a new cancer center in India” noted that, “Although postmastectomy reconstruction was available at the hospital, very few women and families were willing to even discuss this, as their primary focus was on treatment of the presenting cancer.”

Another 2021 study surveyed 10,299 women, of whom 76.5% said they would choose to undergo reconstruction – but after a particular procedure’s length and cost were explained to them, more than half the women said they were uncomfortable with the idea.

At the same time, many women are also deeply affected by the loss of their breasts. “The immediate response is to find ways to save one’s life and not think about the future,” said Dr Ritesh Gupta, a plastic surgeon and the founder of Breast Restore, a clinic in Mumbai that focuses on educating women about their options after a mastectomy. “But the day after the surgery, when the doctor removes the dressing and women end up seeing their flat chest, then it sometimes hits them hard.”

This experience marks breast cancer survivors apart from most other cancer survivors.

“Unfortunately, while other cancer survivors wholeheartedly celebrate becoming cancer-free, breast cancer survivors can’t always celebrate the same way because they’ve lost their breasts to the disease,” Gupta said.

“They just accept that it is a consequence of the cancer and don’t consider that there is something that they can still do about it,” he added.

Some women also hold the misconception that the cancer might return if the breast is not removed entirely. Dr Somashekar SP told me that he had recently seen a young patient who refused to consider reconstruction for this reason. “She was terrified that the cancer would come back,” he said. “But I sat down and counselled her and finally she was able to agree to the surgery.”

Ragini G a 36-year-old based in Bengaluru, who was offered breast reconstruction as part of her treatment during her first consultation with her oncologist, also held this fear. “I did not want to risk getting cancer again or facing any other complication, because I had my two babies to think about,” said Ragini, who had first found the lumps a few weeks after she stopped breastfeeding her twins.

Eventually, Ragini did opt for the procedure, which she underwent four months ago. Today, she is still getting used to the changes in her body and is unsure if she made a good decision. “It’s still all very new,” she said.

The reluctance to undergo surgery extends even to breast conservation surgery, which involves only partial removal of the breast, along with reconstruction. This is a relatively recent option for patients in in India – until a few years ago, they had no choice but to undergo mastectomies. But even in situations where “there is an opportunity to save the breast by only removing a part of it, patients refuse. They ask for the whole breast to be removed,” said Somashekar, who is also the President of the Association of Breast Surgeons of India.

Gupta has noticed that women who work in the medical field are more likely to opt for reconstruction. “Because they understand the treatment process and are able to foresee the future, they take the decision to get the reconstruction,” he said. A doctor he knew, while a resident at Tata Memorial Hospital, Mumbai, told him that had she not undergone the surgery, she would not have had the confidence to meet patients.

Many women are also reluctant to opt for the surgery simply because they are conditioned to not prioritise their needs. “Even when it comes to detection, a lot of women end up coming at an advanced stage of the cancer, even if they have noticed the lump earlier on,” Jayaram said. “If it doesn’t hurt, the women don’t go to the doctor and just wait for it to disappear.”

She added, “To this day, women find it odd to speak to their husbands or family members about these things. So they only end up coming when their pain is very bad, but by then the cancer has spread to an advanced stage.”

Gupta noted that when patients were accompanied by their sisters or friends, they were more likely to agree to a breast reconstruction. “The women are a little more uninhibited when the man is not present while I’m giving her all the options available,” he said. “The father or the husband is more focused on the patient becoming cancer-free as soon as possible.” Another doctor said he ensured that the husband or father sat outside the exam room if they had accompanied the patient. Since the man is often the decision-maker and the only bread-winner, he explained, women don’t find it easy to express their needs, and fear that they will be a financial burden on the family.

I asked Lakshmi N, a mother of two a from Harihara Karnataka, who was 44 years old when she was diagnosed with breast cancer, if she would have considered the surgery if it had been affordable to her. She thought about the question for some time. “Probably not,” she said. “What if something had gone wrong during the surgery? I had my little children to think of, and needed to go back to them,”

Within a year of her diagnosis, after a mastectomy and chemotherapy, she was free of the cancer, but the option of reconstruction did not arise. “We always knew that it would be impossible to afford,” Lakshmi said.

Women do have options other than surgery: for Rs 7,000 to Rs 8,000, cancer survivors can buy external pads that can be kept inside the brassiere. But for women like Lakshmi, even that was too much of an expense.

“I just used some cloth to put into my blouse. I’m fine with it,” she said.

Dr Balaji Ramani, senior consultant, MGM Healthcare, Chennai pointed out that because breasts are not seen as having a “functional” use, reconstruction is not perceived to be essential. “If it is cancer of head, neck, mouth, jaw, that part has to be reconstructed, there is no other way,” he said. “But when we offer breast reconstruction, it is given as an option unlike in other cases. So because it is an option and expenses increase, the patients and their families begin pondering over whether it is absolutely essential to spend that amount of money.”

According to many doctors I spoke to, reconstruction surgery at a private hospital costs anywhere between one lakh and two lakh rupees. “Breast reconstruction is looked at as a cosmetic surgery and as a luxury. It is not seen as the right of the woman,” said Gupta.

In urban areas, awareness about reconstruction and conservation surgeries has increased, doctors said. “In the last ten years, things have changed,” Somashekar said. “More women come in at an earlier stage and thus it is possible to conserve their breasts.”

In a paper that he worked on, on the rate of breast conservation surgeries versus mastectomies at a tertiary care centre in southern India, Somashekar and his colleagues found that the percentage of women opting for the surgery went up from 38.8% in 2015 to 46.5% in 2017. “But in India, breast-conserving surgery is offered only in a few selected centres,” the study noted. It also cited other reasons for the low rate of the surgeries, such as late-stage presentation and low acceptance among patients and their families. Further, many centres did not offer radiotherapy, which is crucial for patients undergoing conservation surgeries, to eliminate all risk of any cancerous tissues remaining in the body.

Another common problem women face is that insurance schemes don’t always cover reconstruction and conservation surgeries. A 2019 study in the Indian Journal of Surgery noted that many insurance providers consider some of these surgeries to be “cosmetic” procedures, “and not part of routine clinical management of breast cancer”. Insurance claims for such surgeries are, therefore, “routinely denied, thereby, limiting its availability to the needy patients,” the study added.

This is particularly common when women consider reconstruction surgery after some time has passed. “If the patient changes their mind a few years later and decides to get the surgery, then some insurance companies will not cover it because the point at which they ask for the surgery, they are technically ‘cancer-free’ and thus outside the scope of the insurance for cancer treatment,” Gupta said.

Elsewhere, women have fought to bring reconstruction under insurance coverage for breast cancer patients. In the United States, a 1997 court case resulted in a law being enacted on the issue. That year, a woman named Janet Franquat, from Long Island, New York, was diagnosed with an aggressive form of breast cancer and required a mastectomy after chemotherapy. She wanted to get reconstruction surgery but her doctor, Todd Wider, learnt that her insurance plan did not cover reconstructive surgery, because it was considered a cosmetic procedure.

Wider performed the surgery for free but was outraged by the incident. The doctor campaigned to get the law changed and won the support of New York senator Alphonse D’Amato, who led a nationwide bipartisan lobbying effort that resulted in legislation.

On the floor of the Congress, the senator said: “Mr President, I decided that I would give Mrs Franquet’s insurance company a call. When I spoke with the Medical Director, he told me that replacement of a breast is not medically necessary.” He added, “Too many women have been denied reconstructive surgery because insurers have deemed the procedure cosmetic and not medically necessary. It is wrong.”

President Bill Clinton signed the Women’s Health and Cancer Rights Act, also known as Janet’s Law, into law on October 21, 1998. The law stated that group health plans, insurance companies and health maintenance organisations had to provide coverage for reconstructive surgeries after mastectomy for breast cancer. The coverage would have to include all stages of reconstruction of the breast on which the mastectomy was performed, surgery and reconstruction of the other breast to produce a symmetrical appearance, and treatment of any physical complications of the mastectomy.

Gupta believes that India needs a similar law. “We are at least 25 years behind the USA in this regard,” he said. “Unless we also have a similar law, women won’t opt for reconstruction easily.”

Radhakrishnan explained that if patients only have to deal with a single doctor from the time they make their first appointment, to the time they go in for the reconstruction, they have more trust in the process. “If patients finish the cancer treatment and are then expected to go find a plastic surgeon, most women won’t feel motivated to do so,” she said.

Dr Richa Jaiswal, who is doing a breast surgery fellowship at Manipal Hospital, Bengaluru, said that breast surgeons can handhold patients through the entire process. “We explain to them that it is not solely a cosmetic surgery, and clarify any doubts they may have,” she said. “We do the marking of the flap and incision planning on the day of surgery. Patient are less anxious this way.”

The fellowship was set up in 2005 year by Dr Somashekar SP. “We were the first medical institute to initiate a course for breast surgery and so many have become specialists in the field,” he said. But, he added, the problem isn’t only one of a lack of specialists, but also a lack of equipment and infrastructure. “What is the point of a breast surgeon in a rural hospital, if they do not have the equipment to perform the procedures?” he said.

Even where specialised breast surgeons may not be available, other doctors can be trained in how to handle cancer patients. Dr Suma Nair from the Department of Community Medicine, Kasturba Medical College, Manipal, who has been working in the field of breast cancer screening, said that much depends on the person that the patient first approaches. She pointed out that in some countries, like the United Kingdom, there is a defined care pathway that the primary health care providers follow when they meet a cancer patient – this is not the case in India.

“It is unfortunate that many a time the primary care providers are themselves clueless when patients approach them, leading to diagnostic delays and poorer outcomes,” Nair said.

Counselling is also key to encouraging patients to consider breast reconstruction. “If we are able to gain the trust of the patient and assure them that this is the best option for them, patients believe you,” Somashekar said.

The importance of counselling is borne out in the 2021 study, in which 41% of patients stated that they would reconsider their decision to not have reconstruction surgery if they were “properly counselled with visual aids” and given a “realistic understanding” of the results of reconstruction.

According to Ramani, part of the reason that counselling isn’t as common as it should be is that for many years, doctors were primarily focused on the outcome of the cancer treatment itself. “Previously the priority was ‘survival’, we did not think about reconstruction all that much,” he said. “Today, because we are sure about the outcome, we have the capacity to think about the future of the patient as well.”

Though some doctors acknowledge the need for counselling, for many patients, the lack of even basic communication has been scarring.

The day that we met, Sandhya Joseph, who is now in stage four of the disease, was having what she said was a “good day”: she had eaten on time and was able to sit up straight on her sofa. She frequently stopped mid-sentence to silence her two parrots who were screeching loudly. Joseph said that the birds were, in fact, speaking. “They’re asking, ‘What happened?’ because there are new faces in the house,” she said, smiling.

After Joseph’s daughter shifted both their cages to the bedroom, the birds fell quiet. She then returned to her seat, next to her mother.

Joseph’s daughter explained that her mother’s doctors’ lack of compassion was not limited to the question of reconstructive surgery, but extended to every step of the treatment. “Doctors never liked being questioned about the medicines or the treatment. If we tried to ask about a side effect or an alternate method or just general queries, they would get so angry,” her daughter said.

Joseph is now weighing her options for places to seek further treatment. ­­“I will never go back there,” she said.

This reporting is made possible with support from Report for the World, an initiative of The GroundTruth Project.