My Journey to Diagnosis

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.

So far I have had no definite date for my test. I know it will take three hours and there’s an hour’s drive each way. It will be a long day, especially going without food.

In my 13 years in this facility every one of my medical situations has required planning because of my special needs. This causes me trepidation because each time I need medical treatment there is no comfort zone. It is a totally new experience.

I am on what has become my journey to diagnosis.