Some Cancer Information Brings an Uneasy Feeling

Article

As a cancer survivor, reading some information brings an uneasy feeling.

Sometimes when I read certain cancer-related information, I get an uneasy feeling. Most recently, I felt this when I read an article from an oncology nursing publication. It stated there was no clear association between breast pain and cancer. Making screening beyond physical exams for women under 40 not cost-effective. It was the same when looking for a new oncologist after moving to another state. The first cancer center said since I was 10 years post-diagnosis, there was no need for any kind of blood work. It was not cost-effective. They told me outcomes are not affected whether they find a recurring cancer early or late. They told me that by the time it showed up in my blood work I would have pain. Their policy was to scan when there was pain. I realize that they are telling me what they believe to be true.

And I realize it is also true that I am not a doctor. I am a patient. I was diagnosed with inflammatory breast cancer at the age of 38. At the time of diagnosis, it was painful — painful in many ways, but specifically, I had breast pain. Since then, I have been having blood work done no less than once a year since treatment ended. My blood work was normal when I had active cancer, except for one test. One test that is not effective in all patients, but was effective for me. It is not an expensive test. It is nowhere close to the cost of a scan.

Yet the new facility told me they would not do blood work just to ease my nerves. Wait, when did nerves come into this discussion? Yes, now my chart says I have anxiety.

I decided that I am not comfortable with these schools of thought. The feeling I get is not a good one. It makes me feel like my life is irrelevant outside my circle of family and friends. It makes me feel like costs drive my care, not what's best for me. I don't care for that feeling.

I now travel five hours one way to visit an oncologist twice a year. I do this because I feel that she treats me as an individual, not a statistic. The first oncologist I met in 2007 shared some words that have stayed with me. He told me when I asked him what our odds were of beating this cancer that I was not a statistic. He said those numbers applied to groups of people. People that we didn't know. We didn't know their health before diagnosis, their ages or anything about them. He told me no matter what the stats said about my odds, I needed to think they did not apply to me. That has carried me almost 11 years past diagnosis. My husband always says, "if it ain't broke, don't fix it.” I think I will stay with that. Regardless of what statistics say I will continue to seek care that makes me feel valued and heard.

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