I Survived: 'Women Are Not Taught To Touch Themselves...How Will They Know If They Have Breast Cancer?'

Every year in October, we observe breast cancer awareness month and for the longest, to me, it was just an important health month to spread awareness about it. However, things changed for me, and it changed twice.

The first time my life changed was back in June 2018, when my mother, a resident of Delhi, Dilshad Garden to be specific, 48 years old, discovered a lump in the left side of her chest. This is when I was just about to start my bachelor's from the University of Delhi. As excited as I was to live the university life, there was a lingering anxiety.

My mother, while resting one day, felt something on her chest. She tried to feel it, but could not. No one teaches women to touch themselves. It is still a taboo, and remains so when campaigns around breast cancers call breasts everything else, but what it really is - breasts!

This was also when my father was not in town, she called him and shared what she just found in her chest. He suggested to go see a gynaecologist. My mother went to someone she trusted, a gynaecologist, even I know of. The doctor asked her to get a breast X-ray, however, it had no clear results.

After a medical examination, the doctor asked her to get a mammography done and suggested that she see a different doctor, but did not tell her who to consult. My mother was confused, "I did not even know it could be something serious, I thought it's just a lump," she said as she narrated the story to me.

"I went to Savita Vihar because there was no imaging lab that had mammography services around our house," my mother told me. However, the mammography results were also not clear. "It was clear that lump existed, but no one was ready to tell me if it was cancerous. Then I was suggested to get a fine needle aspiration (FNA) done," she explained.

As fancy as it sounds, the procedure is not so fancy. FNA is done using a thin needle and syringe to extract fluid from a suspicious area of the body and is then diagnosed to rule out any cancerous condition. "We got this done in Preet Vihar because that was the only nearby place where FNA was performed. When we got the reports, it had numbers, but no one told us what it was. The guy who handed the reports came out with a long sad face. Even though we did not know if it was cancer, his expressions were enough of a hint," she said.

With the reports, my mother and my father went to a family doctor, a general surgeon of a nursing home in Laxmi Nagar, which now remains closed. This was though far from our house; it was close to Preet Vihar, where she had gotten her FNA. The doctor suggested that she get her lump removed. "This is when your dad asked him if he should take me to a hospital to an oncologist because we were doubting if it was cancerous. But the doctor said there was no need and that it would take us ages to get one appointment with a doctor in big hospitals, so we just got it removed. We sent it for biopsy at two different imaging labs," she recalled.

The reports came out from both the labs, and there it was. My mother had Stage 1 breast cancer, but was not told, till after her first surgery. She then finally went to Max Hospital in Vaishali and consulted an oncologist. "The doctor there said that I would be put on medications, but that would be enough, I was happy that there won't be any surgeries," she said.

However, life had other plans. Her new doctor also suggested that she get her lump sample transferred to Max Hospital from the previous imaging labs for another biopsy. "After the biopsy at Max Hospital, I was told that there were cells which could still be active around the area of my left breast where the lump was found. The doctor said that if we hadn't removed the lump, then they could've performed a comprehensive test around the area on my breast where the lump was detected to see whether cells were multiplying. If they were, they would have taken care of that in just one surgery. However, the only way to know now whether any cells are multiplying is through another surgery," she explained.

This was an axillary lymph node dissection (ALND), where a lymph node from her armpit was to be removed and sent for biopsy in the middle of surgery. If it came positive then the nodes would be removed from her armpit, if it came out negative, then the area would be stitched, with just one of the tested samples of lymph nodes removed.

While the tests were negative, which meant no cells were active, this surgery made her weak. She could not lift her left arm and had numbness around her left hand for more than one year.

Even though she was cancer-free, she was now suggested radiation therapy. "It was a difficult time because it was painful and it felt like my body was burning. I smelled like burnt flesh. I would feel really hot even when the AC was on," she said.

She was then prescribed medicines that lowered her estrogen levels. These medicines were called "life-saving drugs" and were prescribed to her for 5 years. I remember getting these medicines every three months from a CGHS-designated medical dispensary, near RK Ashram Marg at subsidised rates because otherwise they were very costly.

The medicines lowered her estrogen levels because estrogen stimulates hormone receptor-positive breast cancers to grow, lowering the estrogen level can help slow the cancer's growth or help prevent it from coming back. However, this did not sit well with her menstrual cycle.

Due to low estrogen levels, her periods became irregular, however, it did not ring any bell because she was anyway nearing her menopausal age. Upon one of the regular checkups, it was found that her uterus which was supposed to be 3 inches long, 2 inches wide and 1 inch thick, grew 6 times its original size. "This happened because low levels of estrogen messed up my periods and instead of bleeding out, all the blood was collected inside my uterus. The doctor suggested that I get a uterus cleaning done every month, or get it removed. To me, removal sounded more feasible than to visit the hospital every month," she explained.

After my mother got her uterus removed, she bled uncontrollably and had to be operated again. This led to two abdominal operations on the same day, creating a lump or swelling near the site of the scar. This later led to a hernia, leading to another operation. Meanwhile, she was still on her medications, and it was slowly affecting her memory, she started to forget things.

Sometimes I would come back from college in the afternoon and she would open the door and go back to sleep and would forget in the evening that I was home. She would wake up in shock seeing me at home, asking when I came. It was a difficult time. I had never seen my mother like this. She was always smart and had the best memory. She was like our Google map before it was even a thing. Now she could not remember if her daughter was back home.

These medicines had other side effects too, like weak bones, lack of calcium, high blood pressure and other hormonal imbalances. Due to her hernia, her spermatic veins also swelled and caused varicose veins.

However, like any other phase, this too had to pass and it did. After 5 years of continuous pain, weaknesses, surgeries, and all of us trying to be there for her, in April 2023, after all her tests were done, she was finally off her "life-saving drugs". She will soon turn 55, and is living her life, travelling between India and Japan, with the three kids she loves the most, which includes not my sister and I, but a rabbit, and two Indies that our family adopted!

Hearing her narrate her story changed my life because, before today, I did not know that she was misled till she had her first surgery. I did not know that the stigma around breast cancer was so strong that not only did people not mention it, but medical professionals too did not guide her. Maybe there would have been one less surgery or maybe her hand wouldn't have gone numb for one whole year had she been guided and her diagnosis been done right.

One thing she told my sister and me is what she learned from her radiologist at Max Hospital. "When she asked me how I got to know about the lump, I told her I just randomly noticed one day. She asked me, 'Randomly? Do you not check yourself?' I told her that nobody checks themselves, women are not taught to do it. How will they know they have breast cancer? There should be more awareness and people should come out to talk about it."

This is not a remote area where people are not aware. This is the capital city. Still, due to a lack of awareness, there was a delay and ambiguity that guided my mother's diagnosis of breast cancer. This is why, breast cancer awareness month for me, is the utmost important period to spread awareness.

Her radiologist's advice was: If you are a menstruator, check your breasts and armpits for any lumps on every 3rd day of your period.

If you have hit your menopause, then select any date of a month and check your breasts on that date every month.