I went for a regular mammogram last week. On Monday evening the results were posted on the main portal for the Advocate system. The report said there was an indistinct 7mm oval mass. I now need a diagnostic ultrasound.
On Tuesday morning I called my doctor at 6:45 a.m. It turned out that he was on-call. Since the office opened at 7, I assumed (incorrectly) that he would be at work. I left a message explaining that I needed to talk with him about the results.
He returned the call immediately. The first thing he said was, “In the future, never call the on-call line for something like this. I’m at home and can’t help you. From what I remember, you need an ultrasound. My office will be in touch with you.”
His office called me around 11 a.m. and read the report over the phone. The doctor never called to discuss the report with me.
I wrote this letter yesterday and posted it on his portal:
Dear Dr.__, As a cancer survivor, I confront, and will confront, for the rest of my life more testing and screening than the average person, including yearly CTs (perhaps becoming every other year eventually) and yearly cystoscopies. Research among cancer survivors shows that we experience greater anxiety across the board as well as greater scanxiety than the average person. Anxiety is a common side effect of having been diagnosed with cancer. The anxiety is not irrational, either, though many seem to characterize it as such. Once diagnosed with bladder cancer, I have a 50 to 80 percent chance of recurrence. Bladder cancer has the greatest recurrence of any other cancer. If it does not recur in me, I will be in the minority. As I approach five years without recurrence, it is hard to not just hold my breath hoping that I will be among the lucky 20 to 50% who do not have a recurrence. Further, once diagnosed with any cancer, my chances for being diagnosed with a secondary cancer increase. So, when a mammogram comes back with an anomaly, it is reasonable for me to be anxious on two counts. First, an anomaly is requiring a diagnostic exam, which moves me from the general screening pool into the pool of folks who are more vulnerable. Second, there is no guarantee that a finding of cancer in the breast, if malignant, would be a secondary cancer. It could be a metastases. It would be very rare for bladder cancer to metastasize to the breast, but it is not impossible. Consequently, I am particularly invested in test results of all kinds, from my blood results to urine tests to mammograms. Vigilance on my part is not a character defect, but a survival skill. When your office or the medical system within which you work posts results online, I am confronting those results without interpretation. I need efficient responses to those test results and informative responses. When I called the on-call line at 6:45 on Tuesday, I did so thinking that since your offices opened at 7 a.m., you would likely already be at work. I waited on the line until I heard who was on call, and when I found it was you that seemed worth hanging on. It is not helpful for me to talk with your staff about test results because they bring no knowledge with them about the results. I need to talk with you. I miscalculated in calling you, but I want you to remember that it was YOUR choice to return the call from home. In the future, if you do not want to talk to me from home, then do not do so. But also, do not scold me for seeking information from you. I still had to wait hours for your office to call, and then they called only to read the test results over the phone to me. That was unhelpful, as I had read the results many, many times. You never called to speak with me. Instead, I contacted Sloan Kettering and found a service willing to explain my path results to me and help me to understand the word choice used in the path report. Frankly, I think it is a shame that I had to seek out this kind of support from strangers and did not get it from my GP. I am very disappointed things happened this way. The last time I saw you in your office you said two things that have stayed with me and bothered me quite a bit. First, you told to me to stay off Medline. I am an academic, a well educated woman with access to research materials at a university. Not only will I not stay off of Medline, but I am very offended that you think the suggestion is appropriate. I need information. It is my greatest defense against anxiety. Knowing the parameters of my situation is empowering. Instead of attempting to limit my research, you could instead engage with me in looking at the research I have found. I am a natural student, and I learn and gain confidence in that knowledge. Second, you followed up our conversation by asking about my mood. I was in tears by that time, and I have to tell you it was because I was furious with you and felt that you were patronizing me. It was most definitely not because I was sad or depressed. I do not need to be treated like a child. It is unclear to me if you even want to continue as my physician, but if we are to continue working together, we will need to find a way to communicate better. Please let me know if I need to schedule an appointment with you in order to communicate. I have to tell you that it will be a long time indeed before I have the courage to call you or your office again. This time of year is always very difficult for me because it is when I have my big tests for bladder cancer checkups. I go in today for a CT. My experience with you this week has just made things harder. I do not expect you to handhold or provide warmth, but I do expect information and respect. All the best, Kerri Morris
He called yesterday evening. He reiterated in the phone call that I shouldn’t do research on my own because I’m not qualified to read it. Only doctors are qualified for that. He told me that it was inappropriate for him to say anything about the mammogram report except what was written on it.
When I told him that Sloan Kettering explained the terms on the report and helped me understand them, he said, “I wouldn’t trust that.”
And, then, he released me from his care. In the middle of a health crisis, he cut me loose. I do not have a doctor who can manage my care with regard to the mammogram and ultrasound. I’m on my own, scrambling for a new physician.
The Hippocratic Oath says, “First, do no harm.” I’m wondering if Dr. __ has read it.