Dealing with medical establishment

kalyson · March 2011

Hello, all,

I just finished talking to the surgical nurse at UCDavis Cancer Center. I had called because I could not find my Bloom Richardson Grade for my tumor that was removed. She asked if I remembered getting the report after the surgery and I said I could not recall seeing it. She asked if I had looked through it since it should be there. I had to admit I did not remember seeing it. She said she would check and call back. She called back and said that it wasn't on the report after all. (Maybe why I did not see it). She said the tumor was low grade, though. I really wanted the numbers. I asked if perhaps the pathologist had forgotten to score it or maybe just did not notate it. She became quite offended and went off on a tangent about how professional my care has been, how they don't forget things, etc., etc. When I spoke to her again later that day I apologized for offending her and tried to explain that although my doctors and the medical staff have been mostly phenomenal, it does not mean things can't slip through the cracks or go awry. I noted a couple of examples in my case, which included an MRI tech accidentally shooting contrast solution into my artery (nasty, painful experience), and the fact that the reason my Oncotype tests results took so long to get back was because my transcription had been lost for over two weeks....

I worked hard to assuage her hurt feelings. I can't help but feel that I just don't have the energy for this. Why do I have to take care of this nurse's feelings? But these folks have our lives and health in their hands, to a certain extent. Scary to have to trust them so much.

suebak · March 2011

I never realized just how bad the health care really is in this country until now. I guess I never really had to use it. Besides paying a monthly premium, all the co-pays and now I am getting bills for the portion of the test or appt the insurance didn't cover. I have to go to certain facilities for certain test. I have been all over the county getting tests, then back to pick up the results so that I can bring them to the city, where my surgeon is located. It is so frustrating.

NatsFan · March 2011

Kaly - you've learned a hard lesson early in your journey - you have to be your own advocate.

Even the best hospitals in the world are run by - you got it - human beings, and human beings make mistakes. For that nurse to become offended at your extremely reasonable request, then to insist that they don't forget things, is totally unprofessional.

If you don't have the information you need by now, call back and if the same nurse gives you an issue, ask to speak to a supervisor. I know it's the last thing you want to deal with right now, but unfortunately having to monitor your own care and make these kinds of calls is part of the deal. If you are not up to calling, you can fax in a letter in which you state your request for your records including the score, then you can call if necessary to follow up on the letter. You are entitled by law to all your medical records, and it's harder for them to blow off a letter. When you're stronger, you may also wish to speak to a supervisor about what the nurse said - it's unconscionable that a nurse would treat a cancer patient like that.

Good luck!

DesignerMom · March 2011

kaly- I'm sorry this nurse was insensitive and unprofessional, and yes, you must always be your own advocate. You were much more patient and polite than I would have been. You should know that by law pathology departments are required to keep your sample "on file" for quite a while in case you need further or repeat testing. If tests were not performed, they still can be. Unfortunately, our medical system is stressed (and so are the nurses). However that is NEVER an excuse for them to forget YOU are the patient. In the past year of my treatment I have had to remind numerous stupid, lazy, incompetent people of this fact. I always start out politely. When I realize they are not the right person to help, I don't waste time and immediately ask for their supervisor. I have gotten quite good at saying (with a sweet smile) "If you are not able to help me, I shouldn't be wasting your time, please get me your supervisor". On one memorable occasion where a billing person said I needed a new referral just a few hours before my scheduled chemo (impossible to get in NYC), I said "As you obviously don't like doing your job, how about we trade places? I'll do your job and you can take mine in the chemo chair!" For the remaining months of my chemo I never had another problem with her. I wish you smooth sailing from here on out. Stand up for your rights and the good medical care you need.

Dealing with medical establishment

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