As if dealing with cancer wasn’t enough, I ran into an unexpected delay in my treatment. On September 29th, I called City of Hope to schedule a second opinion appointment, which thankfully was scheduled for October 6th. That night, they had me fill out a questionnaire, the next day I had a phone appointment with the nurse to go over my history. I gave them access to all my test/procedures, etc. I was pleased on how quickly they were working on preparing for my appointment.
I left work early on Monday, October 6th to meet with the City of Hope Oncologist. As soon as I stepped into the building everything went so smooth. Everyone was super helpful, attentive, compassionate and I didn’t feel rushed. The doctor had looked at all of my test results and explained to me what was happening as if I had just heard it for the first time, this was really helpful because I received new information that I didn’t have before and it also made me understand my prognosis better and my options.
He stated that we needed to wait for the Oncotype DX test results to finalize my treatment, which I told him the other oncologist had placed the order. Before I left, he gave me some homework, to call the lab regarding the oncotype dx to find out when the results were going to be available. As soon as the appointment was done, I went to my car and called the lab to find out when my results would be ready….to my horrible surprise, I found out that the test had never been ordered! I was shocked, in disbelief and angry! I am usually a calm and collected person, I don’t get rattled easily by things, but this…this…was my health! I called the hospital to see if they had sent my specimens to any lab which they stated they didn’t have an order. I called the office of the first oncologist to see when they had submitted the order but I couldn’t get a hold of anyone so I left a message. I called my friend and aunt to vent…then I left the parking lot and drove home.
The next day I had an appointment with my rheumatologist early in the morning. I got to the doctor office and they told me I couldn’t see the doctor because I had unpaid balances that I needed to take care of, it was true…I just couldn’t take care of the portion that they wanted me to pay at that time. I explained that I really needed to see the doctor due to starting chemo soon and if they could make an exception, I was told to wait in the lobby while they checked. I am already stressed on what happened the day before and while I wait, I call the lab and hospital again, maybe they made a mistake, maybe they didn’t put in my info correctly to pull up the record, but no….they had no record of an order being placed. I called the first oncologist again, still couldn’t get a hold of him and left another message. At this point, the front desk lady stated I had to talk to the finance dept, so I called and by this time I was so upset that I was crying when I was telling them my situation and why I was requesting an exception. Thank God they granted it, after the call I went to the bathroom and cried for a good 10 minutes. I cried because I felt so out of control and this was not supposed to be happening. I saw my rheumatologist and found out that I had to stop the medicine that I was taking since it could make the cancer worse. UGH! Make it worse?!? One piece of good news is that it looked like my RA was in remission since everything looked good. Unfortunately with all this stress, I did begin to start getting my RA symptoms again.
I was so upset, it had been two weeks since the test was supposed to be ordered, 17 days to be exact. 17 days wasted! The worst part is that I couldn’t get a hold of the first oncologist to find out what the heck happened, I left messages but didn’t get a call back. After I left the rheumatologist, I quickly emailed City of Hope (COH) oncologist and asked him to order the test, within an hour he had sent in the request and in 2 days, my specimen was on its way to the lab. When I first called the lab and the hospital, I explained my situation, they were so helpful that both the lab and the hospital would call me with updates thereafter. I started my drive back to work, I called my friend to vent and cried a bit more. Then I composed myself and finished my work day.
I didn’t get a call back from the first oncologist office until two days later on Wednesday. Not sure if it was a nurse or an office assistant but I asked when the oncotype dx test was ordered. She proceeded to tell me that it had not been ordered since they were waiting for the pathology results from my lumpectomy. I stated that I had physically brought those results in Sept 19th when I met with the doctor and a copy was made and even the doctor looked at the report. She stated they were waiting for the report from the hospital and again I told her that I had physically brought it in....and then silence…she had hung up on me! I called back and of course I couldn’t get a hold of anyone and left yet another message.
That was a really hard, stressful and deflating week. I cried a lot that week and had a couple of pity parties. I did finally get a call back from the first oncologist, on October 22nd. I had an appointment scheduled on Oct 23rd and someone called to confirm the appointment to which I told them I was not going. She asked why and I told her the whole story. She apologized and stated that she would give a message to the doctor to call me. He called and said “I was told you wanted to talk to me”, I asked him if there were any notes as to why I wanted to speak to him. He sated that the only note he saw was that I had decided to go elsewhere. At this point I had not told their office that I was going elsewhere so that was not accurate. I told him the situation of not ordering the test, getting hung up, not getting a call back, etc. All to which he said, well I have to see who didn’t do what they were supposed to and he then asked so you are going to get care somewhere else? OMG! I almost lost it but I kept my calm and said yes, I can’t trust you or your staff to look after my well being. It felt pointless to continue to talk with him, he didn’t care and he didn’t even apologize.
Even in writing this it still makes me mad and brings me to tears. The lab did call me and told me that my test results would be ready by Oct 28th. The reason it was a big deal to get this test done was because it would determine my treatment and if I needed chemo it had to be done within 2 months of having my lumpectomy and not having the test ordered delaying for over 2 weeks was concerning. That is how City of Hope became my new care provider.
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