Thread by @DrNadiaChaudhri

Now that I have 100K followers, I want to talk about #OvarianCancer. Specifically my gritty story. The goal is awareness. I hope you find this narrative informative.

In January 2020 I started feeling unwell. I was tired, had vague abdominal pain, severe lower back pain & a mild increase in frequency to urinate.

I was treated with antibiotics for a UTI even though I did not have classic UTI symptoms (high bacterial load, burning pee, big increase in urge to pee).

I also got an endovaginal ultrasound that showed free fluid in the abdomen & 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 a lot 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 pursuing endometriosis as an option.

My CA 125 came back at 925. The normal level is 0-35. That night I got connected with Dr. Lucy Gilbert @cusm_muhc. She is a top Gyn/Onc in Montreal.

The next day I had an endovaginal ultrasound by one of her specialists, followed by a CT scan and blood work. Four days later I met her in clinic. She said 24 of 25 doctors in the tumour 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 I first started ‘feeling bad.’

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.

I was also enrolled in a clinical trial that began on cycle 2 of chemotherapy. I was getting either placebo or immunotherapy before each chemo.

Once chemo ended (late October) I started getting niraparib as part of the trial, in addition to placebo or immunotherapy every 6 weeks. Niraparib depleted my hemoglobin, but I was fairly functional, specially after a blood transfusion in January.

Then in mid-December my CA 125 started to creep up. Not a good sign. It crept up slowly. But because this started happening within 6 months of the end of chemo it meant that my cancer had a label: platinum resistant. It had learned to evade the platinum based chemo.

I remained on the clinical trial until March when I developed a bowel obstruction. This disqualified me from the trial. I began treatment with Caelyx, which didn’t work, and then Abraxane which showed promise at first and then stopped working.

Between March and now I’ve had more bowel obstructions than I care to count. The most recent one hasn’t opened. It is why I have moved to palliative care. 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 serus epithelial, platinum resistant ovarian cancer. Ovarian cancer comes in many forms & 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.

I hope you found this thread helpful. Know your bodies. Pay attention to fatigue and changes in bowel/urinary tract movements. Make sure you understand all the words on a medical report. Do not dismiss your pain or malaise. Find the expert doctors.

Although this has been the most frightening time of my life it has been filled with brightness and love.

I have never felt so much love. I have built legacies through the immense generosity of family, friends and a tribe of supporters who have bolstered me into the clouds.

I will feast in my new life and welcome everyone to my forest table.

I am not afraid.