Later in the afternoon, however, after a full day of BS at the office, I got a call from the doctor's office on my cell. It went to voice mail before I could pick it up and when I checked, my heart sunk when I realized that the doctor himself, rather than the nurse, had left me a message. "Hi cancer patient X who is supposedly in remission. I wanted to tell you not to be alarmed but your CA125 levels, although still low, are up and have been going up. I do not believe you are having a recurrence but to be sure I want you to come in for a cat scan."
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My first thought was to call my husband because telling someone not to be alarmed is like saying don't look up now at the sky. Who can resist? My husband was on the phone with my oncologist at that moment and had him call me back. The oncologist repeated the message, again told me not to be alarmed because recurrence does not fit the pattern of my increase which has gone from 8 to 13 to 23. Typically you should be alarmed if it goes from 8 to 50 to 200. So I asked, if not recurrence, what causes this type of increase? He said that it could be measurement error or other diseases that affect the abdomen such as pneumonia (go figure) or ulcers. Since I have been feeling pretty good recently and have had no such illnesses, I have to put my eggs in the measurement error basket. Of course, instead I think of all the things that I could be facing-- more chemo, loss of hair, loss of taste, fatigue, more neuropathy etc. And one of my first thoughts was to call my friend Ann, which I cannot do. There are no cellphones in heaven.
When I got home I checked the internet but it did not help. Surprise, surprise. I am not unique in these experiences or fears. Sometimes this pattern DOES mean recurrence. However, one good piece of info I found that the doctor did not mention this time (although I believe he has told me in the past) is that below 35 is considered normal. Unfortunately the pattern of increase is important and even with "normal" CA 125 levels some women have small tumors.
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Why do I digress to cellphone radiation? Simply because the CT scan I now have to have is a source of significant radiation. One scientist claims that when you convert the measurement systems so you are comparing "apples to apples", CT scan radiation is higher than what Fukushima Daiichi was putting out at the plant after the first fire when a "significant increase" was reported. People here on the West Coast were worried about the plume of radiation and yet the typical cat scan is so much more radiation than we could every get here from the nuclear accident in Japan. In 2009, around the time I was having my first CT scan, a study reported that CT scans are unfortunately the cause of cancer as well as the finder of cancer. Ooops. If I believed in God, I would shake my fist at Her in Jon Stewart fashion.
1. case-control study (KAYS-kun-TROLE STUH-dee)
A study that compares two groups of people: those with the disease or condition under study (cases) and a very similar group of people who do not have the disease or condition (controls). Researchers study the medical and lifestyle histories of the people in each group to learn what factors may be associated with the disease or condition. For example, one group may have been exposed to a particular substance that the other was not. Also called retrospective study.