My name is Sanjukta Sharma.
I am 45, a journalist and writer from Mumbai, India.
On September 7, 2017, I was diagnosed with Stage IIIC low grade serous ovarian cancer.
It shook me and my family, my husband and 5-year-old daughter, to our core. Life is not the same as before.
I experienced the same vague symptoms as many of my low-grade serous sisters. Two weeks before my diagnosis I experienced bloating and extreme discomfort after eating meals. I saw to a gastroenterologist and they diagnosed me with gastritis and gave me medication to treat it. But the symptoms didn’t go away. My doctor wanted to order an ultrasound but my cousin brother suggested a CT. He knew I had a long history of stage III endometriosis which had been treated with several hormone therapies and two laparoscopic surgeries. My gastroenterologist agreed. The CT scan showed “omental nodularity” and “minimal fluid in the pelvis.” I was immediately contacted by gynaecologist, who asked for a CA 125 test. It was above 500. This was all at the Kokilaben Dhirubhai Ambani Hospital in Mumbai, India—one of the country’s best hospitals.
Thanks to my doctors, I got prompt treatment but even then my cancer was Stage IIIC.
My gynaecologist had been asking me to go for a hysterectomy and removal of my ovaries after endometriosis came back aggressively that year, after my last hormone treatment stopped. I stalled it, because I thought I am 43, I don’t want to go through menopause so early.
After the CT and CA 125 results, my gynaecologist spoke to the hospital’s gynaecological oncology surgeon, who is one of the best in this field in India, and asked me to meet him. They both were the team that did my nine-hour debulking surgery. In the advanced section biopsy done during the surgery, malignancy was confirmed. Doctors found that a small cyst, that had been in my left ovary for about three years, and had not even grown, had turned from just a cyst to a borderline malignant tumour to low-grade serous ovarian cancer. They also removed a big cyst from the right ovary, but that was benign.
After debulking surgery, I was on Carbo-Taxol chemotherapy for six cycles.
Since January 2018, I have been in remission.
My doctors say they have rarely treated low grade patients. I know of only one more low grade sister in India. My doctors don’t have a protocol separately for low grade although they are in touch with teams across the world who are trying different therapies. As of now, they treat low grade patients the same way as high grade patients.
Since my histopathology report showed ER and PR negative, they did not put me on a hormone blockers like Letrozole.
If I have a recurrence, my doctors might try a PARP inhibitors, other chemotherapy combinations or Avastin with chemo—-they are not sure. I am also on mistletoe therapy—both in IV (high dose, once in two months) as well as subcutaneous injections every day. I am trying my best to stay in remission with diet, mistletoe therapy, yoga, meditation and trying my best make the best out of my time with my journalism work and working on a book.
We need help
Low grade is a challenge for my doctors, it is a huge challenge for me. I need help, like all my low grade sisters. We need research that looks beyond chemotherapy to find treatments specific, and unique to this difficult, slow-growing but deadly disease.
What I would say to someone else going through this: Knowledge is power, be informed, own your diagnosis and seek the best treatment possible. After that, trust your body, trust the higher powers guiding life and be gentle with yourself.
If you are interested in reading more:
I wrote this article published in LiveMint titled Cancer, clichés, and memories of the body