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My Journey to Diagnosis

March 22, 2009
by Kathleen Mears
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I have been waiting for my lymph node biopsy results since February 26. With each passing day I wondered what was taking so long. I had no follow up appointment scheduled with the surgeon or oncologist. Since each doctor is in a different area, I wondered if there was a communication breakdown. I faxed both of them the first week of March, but I heard nothing.

On March 9 I sent another fax to the surgeon and the oncologist. This fax brought a call from my oncologist’s office reminding me that both offices were working together. That reply made me rather nervous. My oncologist's office said they could call me every day whether they had results or not. Feeling ridiculous, I said that was not necessary. Reluctantly I let the second week pass without making another phone call.

On Monday, March 16, I thought any second the oncologist's office would call. My sister and my friends wondered what was going on. I asked the nurse to dial the oncologist's office for me from the phone at the nurses’ station. Instead, the nurse made the call. Since I had to head to a Resident Council meeting, I left. When I returned, I was told the oncologist's office would not give biopsy results to the nursing home.

Since it is very difficult for me to answer the phone, I have an answering machine on 24/7 and I return phone calls. I thought the oncologist’s office did not want to leave a message. So, I had my sister call. She learned the biopsy results have been on my oncologist's desk since March 5. She and I were quite upset.

Later she told me to stay by the phone because the oncologist would be calling me. I waited patiently but he did not call. After I called my sister, we conference called my oncologist's office. We both voiced our frustration over the time it had taken to get the biopsy results.

Monday night I went to sleep very dejected. I wanted to know the biopsy results. But then I wondered if I really did want to know. I had a feeling that no matter what they showed, I was in for some tests to see if my breast cancer had spread.

My phone rang Tuesday morning at 9 a.m. The oncologist left a message on my machine acknowledging that he knew that I could not answer my own phone. When I returned his call, he said my biopsy results were consistent with my breast cancer of 2007. My heart sank. I wanted to know the pathology report word for word. But feeling shaken, I decided not to ask about it.

I need a PET scan to determine the extent of the breast cancer. It will be done at the oncology facility in Columbus, which may expedite things. The oncologist feels there are many ways to treat me that will not have severe side effects. But I wonder about that.

I have spent a lot of time searching the Internet for answers to breast cancer recurrence questions. I noticed some of the folksiness of breastcancer.org has disappeared. It is much more streamlined and high tech. I am usually alone when I get bad news. But then I am the only one who will be with me until the end of my life.

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Hi Kathleen,

I also enjoy reading your articles. I am a rather new breast cancer survivor, diagnosed in 2007, so I do understand your fear of 'what's next'. I'm sorry that you had to experience unnecessary stress with the lack of communication of your biopsy results. They told me that breast cancer is a chronic condition often it recurs and they have many different ways of treating it. I'm hopeful for you that it will be easier than the first time around. Hang in there you're in my thoughts!

Deb
Monroe, MI

I can understand your frustration....I am sure that I am only one of many people for whom your blog mean a great deal....we are pulling for you! Thank you for giving me a better understanding of what people go through under these circumstances...At this point with this magazine, you are always the first article that I open up. Each blog speaks to me in ways that are at times lighthearted and others profound. Words alone cannot express the thanks that I have for you for articulating the feelings of your circumstances to us in the way that you do. Keep on plugging away!
Peter
Eugene, OR

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Kathleen Mears

www.ltlmagazine.com/blog/kathleen-mears

Kathleen Mears has been a nursing home resident in Ohio for 20 years. She is an incomplete...