“Can’t you give me a CT scan machine for my birthday?” I say when we step out of the car in the parking lot near the hospital.
“Of course, why not, wrapped up in flowery paper with a pink ribbon on top? What do you think such machines cost,” answers my husband. I imagine the huge crème-coloured doughnut-shaped machine in our living room and see myself sliding through the ring like a curved mermaid through a seaweed covered undersea tunnel.
“It would fit in the living room if we kicked out the sofa, the piano and the TV,” I keep on dreaming. “I would use it once a month to make images of my body, just to be sure that we see in time if the cancer returns,” I say. “Oh, and the starting price of a simple CT scan seems to be around $25,000, so if you work extra hard this month...”
Not having the slightest indication of whether the chemo regimen of the last months has killed the cancer cells makes me jittery and tense.
My husband knows this, so we try our best to joke our way through on the road to the radiology department.
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One of the nurses told me once that the results of the blood tests in combination with the outcome of the CT scan and my description of my level of well-being are used to diagnose and treat the cancer. “We never rely only on one diagnostic tool,” she explained.
This principle seemed to work well in 2023. Ever since the cancer returned, things have changed.
Perceived Health Status
This spring, I discovered that my own experience of my general health condition is often unsubstantiated. “I feel good and energetic,” I told the doctor last April when she asked how I felt. The next second she tells me that the results of the CT scan show metastasis all over the place. I felt betrayed by my body.
Consequently, health self-advocacy has become a slippery slope. Yes, my body gives signals, and I have gradually learned to recognize and interpret them, but they have nothing to do with the tumour. For instance, symptoms like dizziness, tiredness or numb hands or feet are caused by the side effects of cisplatin and docetaxel, not by malignancy. It’s not the cancer that disrupts my sleeping patterns but the dexamethasone. What’s more, I suspect that the depressive feelings that pop up 4-6 days after the chemo are caused by the same corticosteroid and not because I’m mentally unable to deal with a life-threatening disease.
In addition, cisplatin causes a dry mouth and gritty eyes; docetaxel causes nose bleeding. Ziextenzo makes my bones ache, and a leaking stoma gives me more stress than a tumour. Concluding, a 61-year-old stage 4 cancer patient in moderate condition is unable to tell the doctor how the cancer affects her daily life and her ability to function. Dealing with a silent cancer makes my self-perceived health judgement a fruitless diagnostic tool in a doctor’s room. I might as well start a conversation about the Wimbledon finals, Alcaraz against Djokovic next time.
Tumour markers
The diagnostic tools that are left are the blood tests and the CT scan.
According to the online test results of the last four months, the blood values, taken every third week, have generally been OK. The lab technicians document blood value outcomes such as haemoglobin, neutrophils, erythrocytes, kalium, B leukocytes etc. in Omakanta, the online health portal. I can access and read the results a few hours after my visit to the lab. That is, the whole list of blood values, except for the tumour markers. I asked the laboratory technician why the tumour markers aren't documented. He didn’t know the answer.
What's more, the nurses will not tell their patients the results of the tumour markers if they don’t explicitly ask for them. “Kuinka korkeat kasvainmerkkini olivat tällä kertaa?” Is my standard question over the phone a day after each lab visit. Only if you ask, you’ll get the answer, I gradually discovered.
In 2023, the tumour markers (CA-125) dropped within a year from a whopping 2530 to a comforting 30 units/mL. CA-125 stands for Cancer Antigen 125, a protein (biomarker) that is often elevated in ovarian cancer patients. The normal range of CA-125 is 0-35 units/mL while a level above 35 units/mL is considered high.
Last year, the tumour marker count and CT scan results were confirming each other. It gave me hope that things were going well.
This year, looking at the numbers scribbled in my agenda I can see that despite the chemo, the tumour markers have only risen since I started chemo in April. They went from 30 units/mL in March to the last blood test in June 94 units/mL. Those numbers are not sky high, nothing compared to values more than a year ago, but the trend is upwards.
Seeing the tumour markers rise makes me feel uncomfortable.
Can it be that the marker results are false negative or false positive? I wonder. Do I have an infection? Kidney stones? Liver cirrhosis? Of course, I asked the doctor during my 4th chemo; she reassured me that the cytostatic should work but didn't give any proof for her claim.
A reliable screening tool is needed. I hope today’s CT scan, eight days after my 6th and hopefully last chemo treatment will give clarity.
CT scan
CT (computerised tomography) scans as well as X-rays (for instance mammograms), ultrasound, magnetic resonance imaging (MRI), bone scans and PET-CT (positron emission tomography) scans are imaging scans that make the body’s internal structures visible. Apart from the PET and MRI, I have had my fair share of scans since the day I was first diagnosed in January last year.
“Oulu hospital owns five CT scan machines,” explains the bearded radiology technologist who helped me to lie down on the scanner table. Arms up, a foam pillow under the knees. I know the drill and focus on the brand name written in orange letters above my head. Siemens Healthineers it says in orange letters. The logophile in me loves “healthineers”.
When the machine starts, it makes a soft noise. I can see the X-ray tube rotate around me from the top of my diaphragm to my pelvis bones.
Some people get claustrophobic in a CT scan but I’m OK with the procedure. My only worry is that I need to pee: prior to the test you need to drink 1 litre of water. In addition, when the IV contrast dye (needed to help the radiologist see organs and other tissues within the body) spreads to your body, it gives a warm feeling, as if you are wetting yourself. Luckily, my bladder is complete and functioning, so I squeeze my muscles tightly together while I follow the instructions through the speaker: Hold your breath……..breath out…
The whole operation takes about 30 minutes and as soon as I’m allowed to leave the room, I rush to the washroom in the corner of the hallway. This is followed by drinking another fair amount of water throughout the day to help flush the contrast out of my body.
A radiologist will review the images to see if there are abnormalities, what size and shape the tumours are and where they are located. He or she will then send the observations to my medical team. I wonder if a CT scan as the only reliable diagnostic tool is enough to detect cancer.
We will hear the results halfway through August. In the meantime, we try to joke our way through to manage the stress and stay positive.
Also, maybe it isn’t such a good idea to have a CT scan gadget in my living room. Apart from practical, aesthetic and financial reasons (CT scans in Oulu cost between 1-1,5 million €, explained the technologist), the X-rays produce ionising radiation that can cause cancer. Doctors should always justify whether the benefits outweigh the risks.
