The Ovarian Cancer Chronicles Part 1: Recurrence
Editor's note: This is part 1 in a series of introspective blogs written by Antra Boyd, iRNPA detailing her personal journey as an Independent Patient Advocate and recurrent ovarian cancer patient.
It was my first visit to my gyn/onc in six months. I sat with the discomfort of going in for my scheduled screening wondering how important it was, the tumor marker was a weak indicator of cancer's return anyways, and I was by the way, DONE with physical exams, blood tests, scans, and any type of medicine in general. I thought about not going. Seriously.
But I went. With a plan. I walked in there, all gangbusters, to tell my gyn/onc that I was good. Actually, it was his newly minted physicians assistant I saw first and I gave her a mouthful as to why the tumor marker was lame, why I didn’t need to be seen anymore after this. She listened and told me that we could talk to the doctor when he came in. But first, the vaginal exam. My favorite. Actually, that is almost tied with the rectal exam, which I got as well. After she was finished, she told me she felt something on the posterior (back) part of my vaginal vault. I don't have lady parts anymore so the vaginal vault consists of the vaginal cuff that was made during my robotic hysterectomy.
What did that exam get me? Another rectal/vaginal exam. Two in one day! Hurray! But my gyn/onc could not dispute what the PA had found. It may just be hard stool he told me, but he wanted a CT scan to be sure.
It may just be hard stool he (the doctor) told me, but he wanted a CT scan to be sure. I got the scan and waited tensely for the results. It came back clean.
So much for having a plan(ish) to get out of the medical system, it looked like I was going right back in. I got the scan and waited tensely for the results. It came back clean.
One thing to know about CT scans is that different places have different pre-scan instructions. All my prior CT scan instructions were to simply drink a bunch of water right before (for a full bladder) and then IV contrast during the scan. You do not want to have a squishy, raisin-like bladder on a CT scan because that makes it harder to see other structures. Or they tell you to drink oral contrast right before (to better visualize the bowel) and then have IV contrast during the CT.
I did not want back-to-back contrast. Why? It’s hard on your little kidneys. How do I know? Because they check your kidney function right before they inject the contrast. So ask your doctor what is absolutely necessary. Don’t be afraid to question.
The thing is, something was off. I could not put my finger on it… It was as if I had a finger gently tapping me on the shoulder saying “check again”
So, all clean, no cancer, I am never going back to the doctors (don’t get me wrong, love the guy, but I was done).
The thing is, something was off. I could not put my finger on it. It lingered for a week and a half after I got the “all clean” report. It was as if I had a finger gently tapping me on the shoulder saying “check again”. So, because I went to an independent imaging center (not attached to a hospital or clinic) I called them up and asked to speak with the radiologist who read my scan and made the report. The gal at the front office was a little surprised by my request.
“Um, we don’t usually let patients talk to our radiologists, that’s what your doctor is for.”
To which I replied, “I understand, but I have some questions for the radiologist.’
“He’s not here today”, she said.
“Well, is there a radiologist there I could speak to?”
“Let me check and see if he will talk to you.”
I was transferred to the on-call radiologist (it was late Friday afternoon) and I began to explain that something just didn’t match up. How was it possible for a physical exam in which the doctor felt something be inconsistent with the CT scan results?
How was it possible for a physical exam in which the doctor felt something be inconsistent with the CT scan results? He pulled up the scan and started looking through it
He pulled up the scan and started looking through it and said, «I hate to be the one to tell you this, but this scan is not clean. There is a 4 cm mass on the posterior wall of your vaginal vault and it looks like there may be some liver involvement as well.”
We know. If we listen, we know.
And, thank gawd I listened, had I ignored it, I would not have shown back up to my gyn/onc for another six months!!!.
I went back to my gyn/onc (sigh). We had a long discussion about what this means for me. We need more information. I am going in for an MRI in a week.
Another tip for you. Did you know that many of the independent imaging centers will not do a pelvis/abdomen MRI in one sitting? Did you also know that the contrast they use, called gadolinium, can be toxic, especially in patients with renal insufficiency and that gadolinium accumulates and is retained in tissues, especially the brain.
So why on earth would an imaging center insist on doing two different MRIs for the abdomen and pelvis when they could easily just do one?
Dare I say, “the bottom line?”.
I called the imaging center and asked to have the MRI is one sitting and they told me that the policy of the office was to make them two separate procedures just in case the patient got antsy and wanted out of the MRI before all the imaging was complete. You know, claustrophobia and all.
I am horrified that the inconvenience of having to start again if someone bails and they lose out on an appointment time or an incomplete MRI trumps giving a patient gadolinium just once when applicable. It's gross.
Needless to say, I had to wait for my pelvis/abdomen MRI as I found a hospital (in which I will pay more out of pocket than if I went to an independent imaging center) that will do the MRI in one sitting which means I will get the contrast just once instead of twice.
Now I wait. It’s been torturous, I’ve had like five meltdowns, but I am ok.
To read Antra's blogs about her initial fight against ovarian cancer, follow the links below.