The Pink Initiative is an organization that promotes nationwide awareness about breast cancer among women in India. Based out of Mumbai, it supports women diagnosed with the disease and is a resource for information on all things breast cancer. We were smitten with this organization — and the two individuals behind it — from the moment we met.

Here are some excerpts from our sitdown with the inimitable and indomitable co-founders, Dr Sumeet Shah, a surgical oncologist,and Ujwala Raje, a breast cancer survivor. Together, they are the heart and soul of the Pink Initiative.

TS: What was the idea behind the Pink Initiative?

Dr. Sumeet: When I was doing my residency as an onco-surgeon in a Mumbai hospital, I witnessed a lot of botched-up cases. General surgeons often treat breast cancer on their own, without involving oncologists. And when it comes to cancer, a small mistake can reduce life span and chances of survival. I was shocked to see this happening around me. In 2001, I launched a site, Breast Cancer India, with the intent to educate people, so they can make the right choice. Within two months, the site had high search engine rankings, which made me realize that there was a dearth of such information. I also realized what India lacks is the middle person between the doctor and the patient. Doctors usually don’t have the time to interact with the patient and provide support. I wanted to form a support group both online and offline. So, whenever I got new patients I would connect them to older patients who have already been treated.

But the main reason to start an organization was to generate awareness, and also so that people wouldn’t think I was doing this for my personal benefit to get more cases. I wanted to encourage people to come in early for a diagnosis.

Two years ago, I met Ujwala and operated on her, and I instantly knew she would be part of the endeavor. Even before her treatment was done, she started working with me. We have worked together ever since.

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Ujwala Raje: In 2000, my mom was diagnosed with breast cancer. By the time she was diagnosed, it was at an advanced stage, so unfortunately it was not treatable. She was in her early 60s. Despite being a scientist, owing to the lack of awareness around the disease, she hadn’t known what to look out for. We lost her about two months after the diagnosis.

About 6 to 8 percent of cancer cases are genetic. So, I kept my alarm on, did regular self-exams, and everything else. In 2010 I found some deformities and, when Dr Sumeet did a fine needle test, we discovered a malignancy. I’ll admit that the diagnosis did shake me up a bit. My daughter was nine and a half at the time, so there was a fear of what will happen to my loved ones if anything were to happen to me.

Since the disease was detected on time, we could treat it effectively. Dr Sumeet told me he wished more patients would come to him early, so that they have better chances of survival. When he showed me the data from the World Health Organization, I learned that, in the United States, most women do regular checkups, and this has helped reduce the death rate. It was during this conversation that I realized it was my responsibility to encourage those around me to get themselves checked.

I realized that a survivor story is what people relate to the most. So [on behalf of the Pink Initiative], I go to corporate offices and make presentations. I’ve also done several radio programmes and I speak at schools and colleges, too. People sense that if the person in front of them, me, has survived, the disease is treatable.

TS: What’s the main reason that most breast cancer cases, like Ujwala’s mother’s, aren’t diagnosed on time?

Dr. Sumeet: The way I see it, there are three main reasons. First, a lack of awareness. A lot of patients remark that if they knew a particular symptom could indicate cancer, they would have come in sooner.

Second, there’s a belief in alternate treatments. A lot of patients who come in might have detected the cancer earlier, but they have tried all kinds of alternate medicine before they finally decided to visit the oncologist. In the process, a lot of time is lost.

And finally, the symptoms of breast cancer are often vague, so if a general physician or gynecologist doesn’t suspect breast cancer, he wouldn’t advise the woman to do any tests. Doctors should know that any breast symptom that persists for a long time needs to be looked into and patients should be referred to a specialist in a timely manner.

Ujwala: The main reason for late presentation of the disease is shyness, a fear factor, ignorance, and not knowing what to look for. A lot of Indian women hesitate to visit a doctor; there is also a fear of a bad diagnosis and the cost implications of the treatment. I think people ignore their symptoms and the body’s alarms. They fear the outcome of a test. In India, 50% of patients die due to late detection.

TS: Why do you think there isn’t a habit of routine checkups?

Dr. Sumeet: I think people are scared to go for health checkups because they think they will discover a problem. They would rather not know until it presents itself. Often by then it is too late. But I would say that I am slowly starting to see a change in this trend. Especially in the cities.

TS: Could you share some stats on breast cancer in India?

Dr. Sumeet: When we speak of cancer, the most important figures are the survival rates and death rates. The number of deaths from breast cancer in India is higher than the number of deaths from all other cancers put together. In the USA, the number of cases are twice that in India, yet the death rate is low. Whereas our incidence is low, but death rate is high. This means we are just not diagnosing enough cases on time.

TS: Why do you believe there is so much stigma around breast cancer in India, even among very educated women?

Dr. Sumeet: The implications of breast cancer (and mastectomy) pose a threat to the femininity of a women, and a cancer diagnosis usually shakes the whole family. There is also a fear of chemotherapy and the side effects, such as hair fall. But there are also women who are alert and well-read, who do regular self-exams and come in on time. They are fairly motivated and not afraid of the diagnosis. And these aren’t just urban or educated women.

TS: What can men do to support the women in their lives who are at-risk for or diagnosed with breast cancer?

Dr. Sumeet: Men need to play a proactive role in cancer diagnosis in their family and ensure that their spouse knows what symptoms to look out for. They should encourage their spouses to do regular tests and, if any symptom persists, to get it treated on time.

Ujwala: To men, I’d say: If your wife has been diagnosed with breast cancer, she needs your support. I was lucky that my husband supported me, and I wasn’t apprehensive about the surgery. Men need to communicate to their partners that it is their partners’ health that is most important, so that women stop worrying [about their appearance, etc].

TS: What can women do to better take care of their health?

Dr. Sumeet: Nothing can replace your own instinct and your alertness. Be aware of what you need to look out for. Once that is taken care of, you just need to listen to what your body is telling you. And if you have any symptom that persists for a long time, seek medical attention.

Ujwala: Love yourself. Taking care of your family doesn’t mean putting yourself lower on the priority list.

TS: What’s your final message?

Dr. Sumeet: We are seeing lot of NGOs from outside helping India. We need to help each other, too. We must all put our efforts together; only then we can conquer this disease.