Giving Up is NOT an Option

I had an appointment the other day with a new oncologist. This is my 6th oncologist in 7 years. I am trying to find an oncologist who will listen to me. Someone who will or can explain their reasoning behind certain decisions. I want an oncologist who will work with all of my other doctors as a team.  I do not think this is too much to ask, and this is one cancer that is best approached by a team of specialists, sharing information and knowledge and conferring with one another.

My current oncologist knocks down suggestions made by my other doctors and gives no real reason. He has become very complacent and has stopped listening to me altogether.  When he thinks I am stable, he wants to pull therapy saying it is no longer needed. Then I find myself having to fight a physician to keep the standard of treatment and maintenance therapy in place for myself. The therapy (my twice a month Sandostatin injections) is the one thing that keeps me able to live a somewhat normal life about 60% of the time. It is the only reason I can leave the house. This random, misguided elimination of my treatment regimen has happened twice now and I don’t feel I should have to fight for something that is standard treatment.

I was hopeful when I left the house yesterday morning. I should have known it was going to be a train wreck when we hit horrendous traffic before we even got to the freeway. I called the clinic and let them know I was going to be late. They said no problem. Deep down I felt I should have canceled, but I did not listen to my inner voice. I found out later my husband also felt the same way, but he didn’t want to say anything. I don’t blame him really. I probably would not have listened.

We got there about fifteen minutes late, got checked in, and everything seemed to be fine. Then the doctor walked in and both my husband and I felt at that point it was not going to be good. The doctor had me go through seven years of what I have been through, which I was not really prepared to do.  Is it too much to ask to have a prospective new specialist physician to have read my charts, events, medical history, and followed my critical blood tests and care prior to a first appointment? I pulled it off as best I could and of course I left out a few items which might have helped.  Thinking back now, these overlooked event just would not have made any difference in the outcome of this appointment.

 When he entered the room, he seemed like he had better things to do. He even stepped out of the room to take a call and was gone for almost 10 minutes. When he did return I had to go over information which I had already covered. After that he then proceeded to tell me that he looked over my records and that there was no possible way I could be suffering with carcinoid syndrome. He said he had no doubt I had been suffering with something, but it wasn’t carcinoid related.

I was floored. This guy had no clue what he was talking about. At that point I felt it was in my best interest to wrap it up and leave. He then said something to me that just made my blood boil. He asked me if he arranged for me to get Sandostatin injections every 14 day would that make me happy? The implication was that he wouldn’t be following on this and that I would not be followed in oncology any longer.

This just kept getting better! Did he really just imply I was a drug seeker, requesting a medication that has no addictive properties whatsoever? A drug that in reality would have NO effect on a normal person unless they had the illness and in need of suppression of those related symptoms? I almost had no words. I wanted to come unglued at that point and tell him what I really thought of him. I was so hurt and angry.

I did not give him an answer and just listened to him as he continued to tell me things about carcinoid cancer that have either been disproven or that have been out of date now for past 20 years. I began to wonder if this guy was living under a rock.

I have been treated for this cancer/syndrome now for seven years. It is very well documented. I have had several instances of what they call carcinoid crisis during surgeries and procedures. How can they wipe out seven years of my medical history because two doctors have decided that there is no possible way I could have carcinoid syndrome. I don’t understand it.

I would have fought harder in that appointment but this doctor had his mind made up from the moment he walked in the room. There was nothing I could say to change it.

Now I get to do damage control. I need to see what my next step will be. I am afraid my next step will have to be arbitration with the insurance company. That can take 12-18 months and I have to get a lawyer.  At this point I am not even sure if I will be able to continue to get the Sandostatin that brings relief from the debilitating symptoms associated with carcinoid cancer.

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2 responses to “Giving Up is NOT an Option

  1. Sharon Larsen

    I don’t even know what to say! This is so not right. I can’t believe there are docs out there who are still living in the “dark” ages as far as Carcinoid/NET cancer goes. Maybe you should start sending him some of the published papers that have come our the last couple of years (anonymously, of course). Big hugs Danica! I’m so sorry…

  2. Hey Dani… I am so sorry this did not go better for you. I am at a loss for words… Sending hugs and positive thoughts.