28/09/2015 8:24 AM IST | Updated 15/07/2016 8:25 AM IST

Treatable But Incurable: My Ovarian Cancer Story

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After a few months of ignoring symptoms, self-treating, and bearing with what seemed like run-of-the-mill episodes of constipation, indigestion, heavy menstrual bleeding (which was conveniently attributed to my age - 47) and just not feeling too good, I finally decided to go for a full health check-up. Within hours, my ovaries occupied centrestage in my life and I was looking up "CA 125" on the net. I had ovarian cancer. I have no family history of any kind of cancer, so how did this fit in with my eat healthy and live moderately life theory?

I grew up in Punjab - the land of milk and more milk. Apart from drinking gallons of it in my childhood, I also remember the strong influence of home cooking and an almost arrogant nose down to street food. Moving to Delhi to work and then to my marital home didn't see much change in my lifestyle. My husband and I are professionals leading an almost boring life from the food and style point of view.

"The primary reason why OVC almost always gets diagnosed late is because women haven't been taught to identify the symptoms."

Why on earth had I never heard about ovarian cancer and its symptoms before? This when I was getting regularly checked-up - pap smears, mammography and even a couple of aspirations to pick up uterine lining. What the hell was I thinking not relating the symptoms to this most aggressive of all women's cancers even as I was spending most of my time in cancer hospitals for my husband's treatment? (That is another story.)

One major surgery later and in the middle of the third line chemotherapy and on the eve of my 50th year, it is my mission in whatever life I have left to break the silence on ovarian cancer. The primary reason why OVC almost always gets diagnosed late is because women haven't been taught to identify the symptoms. The symptoms are so generic and unrelated that even doctors miss out on pinpointing the real cause.


We now need to know some facts.

1. Every woman is at risk for ovarian cancer.. The statistics are the same for developed and developing countries and have not changed in over 30 years. Ovarian cancer is responsible for 140,000 deaths annually the world over. In India, the incidence is higher in Delhi and Mumbai as compared to Chennai and Bangalore and only 10% is genetic. In most cases, as it happens the world over, the etiology remains obscure.

2. There is NO screening test for ovarian cancer. The PAP smear test is often confused to be a screening test for any gynecological cancer. It is not. PAP smear detects pre-cancerous cells in case of cervical cancer which has a better success rate.

3. Awareness of symptoms is most important for early detection of OVC. This can make treatment more successful. If a woman experiences any of the below symptoms persistently, she needs to discuss them with her doctor.

-- bloating that persists

-- difficulty in eating/feeling full quickly

-- pelvic or abdominal pain

-- needing to pass urine more urgently or frequently

4. Late diagnosis means less/no chance of survival.

September is Ovarian Cancer Awareness Month. Teal is the colour of the ribbon of ovarian cancer. Teal is the colour of hope and with awareness there is hope -- of early detection, prevention and perhaps a cure. For now, there is just not enough attention accorded to ovarian cancer. The hospital that treats me is resplendent in breast cancer awareness finery but doesn't find it important to highlight ovarian cancer even for a few days. No pharma company dedicates any campaign to OVC awareness or even its treatment. No newspaper carries stories of bravery of women who "don't" survive to tell their story. No town gets painted teal, no doctors want to be interviewed. No patient or caregiver wants to come forward. Why? Is it because there is no good story to celebrate or, as I read somewhere, not many famous women have been diagnosed with ovarian cancer (versus breast)?

"I have been undergoing treatment for the last three years with one chemo cocktail after another without any hope of being cured."

Cancer, as common as it may be getting, is a life-changing disease. If you are not insured, then you probably will end up blowing a lifetime of earnings to pay your way through a treatment that debilitates. People I meet in the hospital always ask me how we are coping with the financial aspect of two cancer patients in the family. The truth is that we are among the fortunate ones who have some insurance and some family support. I call it "cancer luck".

And this is my story - I have been undergoing treatment for the last three years with one chemo cocktail after another without any hope of being cured. I am also coping with the husband's recurring bladder tumour. Fortunately, it is still contained within the bladder but in four years of constant battering, the bladder itself is showing signs of tiredness.

It's time to make some noise. We need to shout from the roof tops like they do for a new shampoo or a mobile phone. About cancer. About the need for early detection. And for better chances at living a fulfilling life.

Because until there is a test, awareness is the best.

Click here for more blogs by Sunita Kapur.

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