A Neuroscientist shares her wrong diagnosis and experience with ovarian cancer
A Twitter user @DrNadiaChaudhri, and a neuroscientist talked about ovarian cancer and her journey to find outing that she had ovarian cancer. She talked about how she was initially treated for urinary tract infection (UTI), even when had no typical signs of the infection.
"She says",
In January 2020 I started feeling unwell. I was tired, had vague abdominal pain, severe lower back pain and a mild increase in frequency of urinate.
I was treated with antibiotics for a UTI even though I did not have classic UTI symptoms (high bacterial load, burning pee, and big increase in urge to pee).
I also got an endovaginal ultrasound that showed free fluid in the abdomen and the possibility of a ruptured left ovarian cyst. The recommendation was to follow up in 3 months.
Antibiotics plus a laxative seemed to treat my ailments. But then by mid-February, all the symptoms returned. My doctor prescribed a different course of antibiotics, although again in the absence of classic UTI symptoms. Things seemed to improve a bit.
Come March, the pandemic struck. By now my abdomen was bloated and I was in moderate pain. My bowel movements had changed too, so I kept taking stool softeners. I couldn't see my doctor because of the pandemic. I was incredibly tired but I chalked it up to the pandemic.
By April, I was on a third course of antibiotics. My doctor still suspected an ailment related to my urinary tract. I was tired, but thought it was the antibiotics.
In May, I had a second endovaginal ultrasound. This one showed that my ovaries were enlarged and had moved towards the middle of my abdomen. There was alot of ascites in my abdomen too. The radiologist suggested endometriosis.
I showed my scan report to an Uncle who is a gynaecologist. He said I should get a blood test to check CA 125, CA 19, and CEA. These are cancer markers. He wanted to rule them out before pushing endometriosis as an option.
The result; my CA came back at 925, and the normal level is 0-35. "That night, she said she got connected with a top Gyn/Once in my region".
After another round of endovaginal ultrasound by one of the Gyn/Onc specialists, followed by a CT scan and blood work. Four days later, the Gyn/Once said that 24 of 25 doctors in the tumor board said I had cancer. She was holding out for endometriosis.
Two weeks later, I had a laparotomy. They cut me open from sternum to pubic bone. Indeed, I had cancer. They removed all of the visible disease in a four hour surgery. It happened on June 10, 2020. About 6 months after my first visit to the doctor.
4 weeks later, I began chemotherapy. Standard of care for ovarian cancer has not changed in 30 years. Over 18 weeks I took carboplatin and docetaxel (allergic to taxol). It was 6 cycles of chemo, once every 3 weeks. My CA 125 dropped, a good sign.
She further stated that in mid December, her CA 125 went up again which wasn't a good sign, she remained on clinical trial until March when she developed a bowel obstruction. Which disqualify her from the trial. She also said that she began treatment with Carly's, but didn't work and then Abraxane which showed promise at first and then stopped working.
She said that between March and now, she's had more bowel obstructions than she cared to count. The most recent one hasn't opened. Which is why she moved to palliative care. She said, " I can't poop or pass gas. I can't eat. I've been on IV fluids for 2 weeks".
My official diagnosis is high grade series epithelial, platinum resistant ovarian cancer. Ovarian cancer comes in many forms and treatments are more advanced for some forms than others.
But the bottom line is that ovarian cancer research is underfunded. We also need more awareness of symptoms because early detection improves prognosis dramatically.
To know more about ovarian cancer, kindly use the search bar for information.