Under 35 and living with breast cancer: Tales of change, hope and survival

A breast cancer diagnosis at a young age affects women at a crucial juncture in their lives, taking away many choices and putting plans on hold.
Women holding a pink ribbon for breast cancer
Women holding a pink ribbon for breast cancer
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Till last year, Shilpa* had been working in Dubai as a dentist. She took a break when she had her daughter, and was still settling into being a new mother when her world came crashing down. When her daughter was a year and four months old, Shilpa noticed a lump in her breast. “I thought it was just a clogged milk duct, which happens when you are breastfeeding,” she tells TNM. However, it turned out to be breast cancer. “It was a malignant tumour — invasive ductal carcinoma,” she shares.

Shilpa returned to Bengaluru after her diagnosis in January this year. After chemotherapy, she underwent a bilateral mastectomy (surgical removal of both breasts) with reconstruction, as well as an ovariectomy (surgical removal of ovaries and fallopian tubes), which has sent her into a surgical menopause at just 33 years old.

The illness has laid waste to many plans that Shilpa and her family had. “I can’t return to Dubai because getting insurance as someone who has a history of cancer will be difficult in the UAE. My husband, who is completing his contract there, had plans of setting up a business; he will also have to return now. Financially, we felt we were just getting settled, but due to the expenses of my treatment, we have to start saving up from scratch again,” she shares.

A cancer diagnosis is shocking and life-changing any time it occurs in someone’s life. Apart from the treatments — such as radiation and chemotherapy — taking a heavy toll on the patient’s body, there are also concerns of it recurring. According to the Centers for Disease Control, most breast cancers are found in women who are 50 or older. In India, breast cancer is the most common type of cancer found in women (57%), followed by cancer in the cervix and uteri, as per a study of population-based cancer registries and hospital-based cancer registries (HBCRs) across India under the National Cancer Registry Programme – National Centre for Disease Informatics and Research of the Indian Council of Medical Research from 2012 to 2016. In urban India, breast cancer constitutes 30% of all cancers in women.

Doctors are pointing out a worrying trend — an increasing number of women are presenting with breast cancer earlier in their lives, below the age of 35-40. According to Dr Somashekhar SP, Chairman & HOD of Surgical Oncology at the Manipal Comprehensive Cancer Center in Bengaluru, India is home to the largest number of young women with breast cancer. And cancers in young women also tend to be more aggressive. This is partly explained by the fact that here, the young population outnumbers the geriatric population significantly, says Dr Somashekhar.

“Currently, 48% of women with cancer are under 50 years of age. On an average, I see nearly 500 breast cancer patients per year. In the last year, 50% of them were under 40. In 2002, the incidence was 16-17% in women under 40. Now, it is 32-33%,” Dr Somashekhar says. This is a trend that Dr Ramachandra, professor of surgical oncology and director of Kidwai Institute of Oncology in Bengaluru, has also noticed. “The number of women in the 20-30 age group presenting with breast cancer has increased significantly,” he notes.

Being diagnosed with breast cancer early on — especially in the late 20s and early 30s — affects women at a crucial juncture in their lives. Many are just starting their careers, are looking to find partners, or may be planning to have children. However, cancer often puts these plans on hold, and in some cases, robs them of many choices. Shilpa, for instance, didn’t necessarily plan on having a second child after her daughter. “But I feel sad that the choice has been taken away from me,” she says.

The shock that doesn't abate 

Shaleen, a manager at an IT company in Bengaluru, rues the delay that happened between her diagnosis last year and when she first noticed a lump in her breast in March 2020. Her second child was 15 months old at the time. Her “first mistake”, she wrote in a Facebook post, was mistaking the lump for a blocked milk duct. In July 2020, a general physician suggested a minor surgery to remove the ‘milk lump’ and did not suggest any further tests. It was only in October, in preparation for the surgery to remove the lump, that the tests revealed the diagnosis — the breast cancer was aggressive, in stage 4, and had metastasized to her backbone.

“I was bickering with my husband the whole day when I got diagnosed. And then I saw him crying. It was a huge shock, but what steeled my resolve to do whatever it took was the fact that I have a daughter who is only eight, and a son who is not even two. I thought to myself then that this is not the time to cry but simply do what I have to, to be around for them,” Shaleen recounts. The 36-year-old then underwent chemotherapy, a mastectomy of the affected breast in March this year, and then had 25 rounds of radiation.

Due to her late diagnosis, the last year still feels like a daze to Shaleen. “I can’t imagine even now that this happened. I am grateful to be alive, and all day I am fine, I laugh. But every night, I tear up. Sometimes I feel so much disbelief that I tell my husband that maybe it was a wrong diagnosis because there was no history of cancer; I had no other indicators. I hadn’t even heard of an ‘oncologist’ before this.”

Though there has been an increase in conversation about breast cancer lately, young women are still not made aware of the risks. One possible reason behind this is while there are anecdotal reports and smaller studies in the last decade, there is a dearth of consolidated and comprehensive data around young women with breast cancer in India. 

When it comes to screening for breast cancer, there is also a lack of awareness on practices like self-examination. Apart from this, a mammogram is often not adequately sensitive to detect breast cancer in premenopausal women due to high breast density, says Dr Somashekhar. 

Shilpa notes that her breast cancer was detected even though the lump was small, because it was superficially placed. Among the young breast cancer survivors TNM spoke to, only she had a family history of cancer — one of her cousins. “Before this, my husband would make jokes about how healthy I was — I would fall sick once a year or so. I was conscious of my diet, and maintained a healthy weight. In some ways, I feel like I’m still coming out of shock,” she says.

For Hyderabad-based architect, Smitha*, the diagnosis in April this year could not have come at a worse time. The 33-year-old had just started her own firm, and had two young children relying on her, one of them still breastfeeding. “I decided not to disclose my diagnosis in professional circles, because I didn’t want people to stop giving me projects because of it,” she admits. “Though there was pressure to perform while going through chemo. But due to COVID-19, I was spared from socialising and was able to keep the matter private.”

Scars that run deeper than skin

“Nothing prepares you for it,” says Subadra Kalyanaraman, a Chennai-based manager at a consulting firm, who was diagnosed in 2018, when she was 29. “We had just returned from a vacation abroad, and though I had seen a lump in my breast, since there was no pain, no history of cancer, I was pretty sure it was benign. I even got a false negative for malignancy the first time.”

Her treatment spanned six months, including chemotherapy, surgery and radiation. When it began, Subadra was most worried about losing her hair. “I immediately got a wig. I was already going through so much; I didn’t want my physical looks affecting me. I was so conscious, I kept thinking people were looking at the wig.” And though she is cancer-free now, she has visible swelling on her right arm, which is an effect of the surgery. The lymphedema, as the phenomenon is known, is caused by a build-up of fluid in her arm, since the lymph nodes from near her right armpit were removed in the surgery. It isn’t painful or harmful, but it is hard to miss, says Subadra. “I have my good days and bad days with it. People see it and say things like, “You still have the swelling?” and “Oh, it is still there?” That brings back memories of the cancer,” she shares.

For women who undergo mastectomy, it can trigger body image issues because breasts are often associated with femininity and beauty, among other things. Studies have documented that women often feel that “half of themselves” is missing. Many women have reported feeling underconfident, self-conscious, and feeling their bodies are “out of balance” if one breast was removed. 

Though losing hair — another feature associated with femininity and beauty in women — can be emotionally taxing, some learn to be unabashed about it too. After chemotherapy made Shaleen’s hair fall, she asked her husband to shave her head. She had even bought a wig and shawl to cover her head, before the treatment. However, when the time came, one day she asked her husband if he was ashamed of her. “When he said no, I dropped the idea of covering my head. Last Diwali, I was wearing a wig for photos, but my daughter said I looked better without it. So, I clicked photos with a bald head,” she says.

“But my body is not the same,” Shaleen adds. “It has a lot of scars. At night, I still have some pain at the place of the reconstruction when I try to turn. That’s when I tear up.”

Signs to look out for

Doctors say that there could be many reasons behind younger women being diagnosed with breast cancer — ranging from sedentary lifestyle, increasing incidence of poly-cystic ovarian syndrome (PCOS), food adulteration, stress, and unhealthy eating habits. Early onset of menstruation (under 12 years) and late menopause (beyond 55 years), thus causing a longer period of hormone production in the body, could also be causing increasing incidence of breast cancer.

Some resources suggest that late pregnancies could also be a contributory factor to developing estrogen-receptive breast cancer. Though studies indicate that having a full-term pregnancy by the age of 30 could reduce risk of breast cancer after menopause, there is also research that suggests that the breast cancer risk reduction from pregnancy doesn’t begin for over 20 years after a woman’s last pregnancy. It is also important to remember that pregnancy and childbirth are deeply personal choices and more women are realising the same — exercising more autonomy in when and under what circumstances they want to have children, if at all.

There are certain steps that women can take to enable early detection. For women who are at high risk due to a family history of breast or ovarian cancer, Dr Ramachandra suggests self-examination from the age of 18, every month, typically five days after their periods. The aim is to know your breasts well enough to be able to detect any abnormal changes such as lumps, nipple discharge etc. at the earliest. “High-risk women should also consult an oncologist once in three years,” he says. Dr Somashekhar adds women in this category should also start self-examination when they are five years younger than the age of the relative who was first diagnosed with breast cancer.

There is also a case for genetic testing for high-risk women in the 25-30 age group for the BRCA1 and BRCA2 gene mutations, which are hereditary, and can cause breast and ovarian cancers.

For others, doctors suggest a self-exam every month from the age of 25, and mammography screening every year from the age of 40. “We also advocate for a pap smear along with a yearly mammogram to guard against the risk of cervical cancer,” Dr Ramachandra suggests. Read more here: How often should you get screened for breast cancer? This, and more answered

Of resilience and survival

While cancer is a life-changing, harrowing experience, the women reflect on it with pain, but also strength. For instance, Subadra says that dealing with cancer has given her a “whatever life throws at me I’ll deal with” attitude. “And because it happened when I was younger, my body was able to recover faster, I think. It has also made me a lot more confident,” she says.

Meanwhile, Shilpa is preparing herself to go through radiation now. “The doctors say because I am younger and hope to live for 30-40 years more ideally, they would rather over treat me now to prevent recurrence than if I was older, in my 50s or 60s.” Though she had reconstruction surgery after her bilateral mastectomy, she says, “You do miss it. Half your body is numb, you cannot feel like you did before. But I convince myself that it is for my good, so that I can grow old with my husband, watch my daughter grow up. These are small sacrifices.” She is also keeping a diary that she can pass on to her daughter, just in case the cancer recurs. “Even if I am not around, my daughter should know what to do. I will also encourage her to go for genetic testing, with her consent, when she is old enough,” Shilpa says.

Smitha, on the other hand, has made changes to her diet and lifestyle to ensure she is doing her bit, even though chances of recurrence in triple negative breast cancer are higher. “There are days where I feel quite gloomy, thinking about it. But hope is my only weapon against it. All that I want to say to young women is: know your body, and if you have any symptoms, don’t ignore them. The earlier you know, the better.”

*Names changed

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