Asha Sharma, a young engineer, narrates the harrowing delays she faced in diagnosing her endometrial cancer (also called uterine cancer) and wishes to use her hardships and learnings to strengthen advocacy for women’s health.
2018 was a difficult year for me - both professionally and personally.
At work, it was after 10 years as Physical Design Engineer at SanDisk (now Western Digital) that I had changed my domain to signaling and power integration engineer. I had taken a vertical transition from management to technical division. That was a huge challenge and I had to give my best shot to justify the shift.
On the personal front, I had to fight a long, arduous battle for survival. I was diagnosed with a rare endometrial cancer. Endometrial carcinoma is a disease of older postmenopausal women and generally affects women above 60. In the younger lot, the prevalence was estimated to be approximately 5%. I was only 33 years of age.
NOTE: Endometrial cancer is a type of cancer that begins in the uterus. Endometrial cancer begins in the layer of cells that form the lining (endometrium) of the uterus. Endometrial cancer is sometimes called uterine cancer
Symptoms
It was in early January 2018 that my symptoms started. It began with small blood stains and continued off and on for the whole month. I was a bit dismissive about it and tried to reason out. It couldn’t be due to my menstruation, I thought. My periods had been perfect. They came with calendar regularity, were never bothersome, and existed as smoothly. Maybe it was some hormonal imbalance that can cause spotting between periods. Or, was it because I had been hitting the gym hard daily - exerting and pushing myself for over 90 minutes. Or, maybe just stress at the office. I thought I should wait and observe.
But beginning Feb, I noticed that from spotting I had started bleeding. Now I had to use a pad a day. My husband, Kamal, had gone to Canada for office work at that time and was expected to return within a fortnight. I waited for him before visiting a doctor.
As soon as my husband returned in March, we went to the local gynecologist. The gynae suggested a routine blood test first. My report showed that my sugar level was unusually high. My HbA1c was above eight. I have never had high sugar. In fact, my HbA1c had always hovered around 5. The doctor correlated the spike in sugar and my bleeding to hormonal changes and said there was nothing to worry about.
My bleeding increased significantly during this time. I had to change my pad every 2-3 hours now. I was also no longer feeling as energetic or on top of the world as before. I could sense other changes in my body. I used to feel sleepy most of the time. At the early morning meetings in office, I would often doze off, even though I would sit in the first row. This is after having slept well at night.
Kamal and I had got pretty scared with these developments. We went to several other gynecologists, but everyone diagnosed it as hormonal change and would prescribe some medicines. They said that most women between the ages of 30 and 40 are prone to uterine fibroids and polyps or ovarian cysts – which cause abnormal bleeding.
Round of tests
Finally, we went to Dr. Vidya Desai, Obstetricians and Gynaecologists at Manipal Hospital. When I gave her my background, she immediately asked me to go for an ultrasound scan. The ultrasound was not easy. I was bleeding. I could not go to the washroom for long because my bladder had to be full. Dr. Desai said that some growth was detected in the uterus and advised a laparoscopy.
In June I shifted to Altius Hospital under Dr. B Ramesh, a leading laparoscopic surgeon (Obs & Gyn). After preliminary examination, the attending doctors said that ‘looks like you have a small cluster of fibrosis. It is very common in women. Not to worry.’
But I was very tense. Somewhere in my mind, I knew that something is wrong. When I approached the doctors again, they said that I have heavy bleeding, so we cannot operate right away. They gave me some medicines to stop my bleeding first. I took those tablets for two months, but nothing happened. There was not even a single day when I was not bleeding.
In September, they finally performed a small surgery to remove the mass from the uterus. It was a hysteroscopy with endometrial biopsy to examine the inside of the cervix and uterus.
I had been bleeding continuously from May – November, a total of seven months. I was beginning to get extremely frustrated and annoyed. I think what kept my sanity through those trying months was my run to the office. I had made it a point to attend office every day, especially because I had changed my domain.
First biopsy report
On November 1, my biopsy report came. The hospital had called Kamal to the hospital, without my knowledge. Nor did they share the biopsy report with me. When Kamal returned home that night from the hospital, he looked tense and worried. For several days, he brushed aside my queries about my report with ‘the hospital has not given it as yet’. But I had noticed a change in him. He had started taking extra care of me. He was getting unusually particular about my diet, my rest, my sleep. One night I saw tears streaming down his cheeks and he handed me the report. I immediately opened my report, and all I could register was one line - rare type clear cell carcinoma. That is how I came to know that I have cancer.
It was the longest and most terrifying night of our lives. We just cried and clung to each other as if life was slipping us by. We decided that together we would conquer the disease with great strength and undying hope.
After that, I had to go for an MRI of the whole body. A whole-body MRI enables direct evaluation of metastatic lesions. It took about three hours to complete my MRI. By the end, I was feeling dreadfully claustrophobic and sick with worry. With the MRI report, we went to the doctor. After a few initial queries, he asked us if we were planning to have any more children, as I was only 32 at that time. I was so shocked by all these traumatic developments of the last few months that I was numb. Seeing me in a daze, my husband promptly spoke up and said, ‘No, we are not planning for kids. Whatever best procedure required for her, please follow it.’ It was the decision of preserving my fertility or protecting my life.
I had my three-year-old son, Samrat, whose antics and mischief had provided me loads of motivation to keep going and not give up.
Second biopsy report
On November 18, I was in the operation theatre again. It was a big operation. I was operated on for 7 hours. It was a radical hysterectomy where they removed my uterus, fallopian tubes, ovaries, the upper part of the vagina, and associated pelvic ligaments and lymph nodes. They removed 18 lymph nodes from one side and 16 from one side of the abdomen. The tissues removed at surgery were tested to see how far cancer has spread.
My second biopsy showed that I had Grade 3 Uterine clear-cell carcinoma (CC) a rare form of endometrial cancer. In clear cell carcinoma, the tumor is aggressive and spreads quickly.
Chemotherapy
I followed up my surgery with chemotherapy and radiation at Sri Shankara Cancer Foundation. I have advised four cycles of chemo, each cycle spread over two days with continuous chemo every four hours. The chemo was excruciatingly painful. The side effects were killing.
The year-long ordeal had made me progressively weak, both physically and mentally. The continuous bleeding had drained me out. Now with the harsh chemo, I had lost more than 10 kgs, I had shed all my hair, I had lost my sense of taste. I was pushing the edge of my body’s tolerance level. It was the worst phase of my treatment. By the third chemo, all I wanted to do was die. In fact, I had refused to go for my fourth chemo and had to be hugely coaxed by my family to complete the last session. After my chemo, I had two sittings of vaginal brachytherapy or radiation. The radiation was a cakewalk compared to the chemo.
My Support System
My family was a huge support and full of positivity. My mother and my mother-in-law both used to take care of Samrat. My son sensed that something was wrong with me, and started behaving more maturely. By the time my radiation, chemo was complete, and I was in my senses, I felt my son had suddenly grown up.
The office people were also very supportive. I had worked at Western Digital for more than a decade. I knew everybody in the organization. My bosses and colleagues extended huge support which was comforting and put me at ease. They used to say: ‘Don’t worry Asha. We are just a phone call away. Let us know if you need anything.’ During my surgery and chemotherapy, I had not been able to attend office and was getting restless to resume. Therefore, within three weeks, as soon as my chemo side effects got better, I reported back to the office.
Advocacy of gynecological cancers
I want every single woman to talk about and be aware of gynecological cancers. Women should be able to talk openly and without reservations about irregular menstruation and abnormal bleeding. Now I tell all the young team members in my office to go for annual check-ups. Early detection is crucial and can save immense hardships and lives.
Anything can happen to Anyone at any time.
