[2023-09-12] Ovarian cancer follow-up, CA125 and a sequel

Today, I had my four-month check-in with the gynecologic oncology team at The Ottawa Hospital. This time, I met Dr. Leigh, an absolutely lovely doctor.

She asked how I was doing. "Down here," I said, motioning to my abdomen, "everything's great." "Up here," I added, pointing to my chest, "not so great." Dr. Leigh had read in my file about my bilateral mastectomy and subsequent infection. She asked what the next steps were with respect to breast reconstruction. I told her that I would be having a conversation with my plastic surgeon, Dr. Zhang, about replacing my missing implant—or not. "I need more information before I can make a decision," I said. In the meantime, I've gotten quite accustomed to putting my prosthesis into my bra each morning. It balances me.

Dr. Leigh moved on to a series of questions aimed at determining whether I might be experiencing a cancer recurrence or unacceptable side effects from the maintenance drug I'm on: abdominal pain, bloating, change in bowel habits, vaginal bleeding, nausea, change in appetite, decrease in energy, difficulty breathing. My answers were no across the board. She also examined my abdomen, which she said felt fine, with no evidence of tumours or issues with my lymph nodes. Dr. Leigh's report stated: "Doing very well on her maintenance olaparib, with no dose limiting toxicities and no symptoms suggestive of disease recurrence."

As Dr. Leigh and I were discussing all of this, my latest blood work results popped into MyChart. I had gone to the Cancer Centre lab just before heading to my appointment. The level of my white blood cells—one of the indicators the oncology team follows closely—was at 4.1, better than the 2.7 it was in August. The normal range for white blood cells is 3.5 to 10.5. Similarly, my hemoglobin returned to the normal range in September (116) after having been slightly below normal in August (108). The normal range for hemoglobin is 115 to 155.

Of course, the most exciting number I received today was my latest CA125. It was a smooth, round 8. Though there is no difference between an 8 and a 9 (the number I had in July and August), I much prefer an 8.

Dr. Leigh and I talked about my continuing to take olaparib. While the evidence in the clinical trial went out only two years (I've been on the drug for 2½ years), it made sense for me to remain on the drug given that my blood work is fine and that I appear to be tolerating the medication well. Dr. Leigh left the small examination room to discuss the matter with her colleague Dr. Weberpals. When she returned, she said, "Dr. Weberpals and Dr. Leigh agree that you should continue with the maintenance drug." I thought it was odd for her to refer to herself in the third person, but then I second-guessed myself. Had I misunderstood her name when she introduced herself? Then I realized that she had said, "Dr. Weberpals and Dr. Le [not Dr. Leigh] agree." Dr. Le was the surgical oncologist who performed my operation in 2020.

Dr. Leigh noted that at my next follow-up—in three or four months—the doctors would discuss potentially stopping the drug following a diagnostic test such as a CT scan. Her report stated: "We will bring her back in about 3 months to see how she is tolerating. If all is well at that appointment, can consider CT scans close to the 3 year mark (Feb 2024) and if no disease could consider discontinuing olaparib."

I asked Dr. Leigh only two questions: "Does my risk of recurrence go down as I get further and further from my initial treatment and has that reduction in risk ever been quantified?" The answer was yes to the first one and no to the second one.

Yes, generally speaking, the longer a cancer survivor goes without a recurrence, the less likely they are to experience a recurrence at all. How much less is not known, though this is what oncologists observe in practice. Generally speaking, cancer that comes back quickly tends to be more aggressive and faster growing than cancer that comes back after a significant amount of time. Dr. Leigh noted that after five years, the risk of recurrence would be very low.

Today, the video I shot in 2021 to share the story of my cancer journey that was used for the 2021 Government of Canada Workplace Charitable Campaigns at Health Canada and the Public Health Agency of Canada (English and French) was shown at the Government-wide launch of the 2023 Charitable Campaign. The creative director behind the video contacted me to ensure that I was aware (I was). I gave him and his colleague complete credit for the quality of the video—a product that reflected great interviewing, shooting and editing. I wrote: "Perhaps one day we'll do a sequel. It would be amazing to share my story after five years when my risk of recurrence is very low. I hope to make it there." He replied: "As for the five-year follow up interview: sign me up!" I responded, "I'll look for you in two years for that sequel."