I had my appointment with my surgeon at Huntsman Cancer Institute in Salt Lake City yesterday. My gut reaction is to explode into a long, ranting tirade. My girls and I came away completely bewildered, with more questions than answers. We are still angry today.Friends are calling and wanting to know how it went. I'm avoiding their calls because I don't know. Okay, it didn't go well. Not at all.
First off, Huntsman's pathology report came back different than the original. Very different. When I told the surgeon's Physician Assistant (PA) what the pathology was on the original report, her jaw dropped open. You see, Huntsman's was a better report. Good news, right?
No. When I asked the surgeon how the reports could be so different, he condescendingly said, (I am not making this up) ... "Well, here's your breast. You have a "thing" in your breast. This kind of cancer is here on the scale (draws a rudimentary line on his scrubs), this kind is here." THAT was his explanation. We were DUMBFOUNDED!
Sorry Charlie, no go. Let's back up. I wait (accompanied by my constant companion, terror, and my daughters, who also have their own terrors tagging along) a prolonged period of time to see you because you are on vacation and only see patients only on Mondays. I waited 2 hours on the waiting room (no problem, I have all the time in the world) to be told by you that you don't know what kind of cancer I have, that I should not worry about financing it, that this is only step one and don't worry about the other steps. You give me only one option, do not ask me how I am, what are my goals, what do I need, what are my other medical issues, what are my fears, what about nutrition, other choices, what are the next steps (don't worry about that, pat pat), poo poo the fact that my insurance is trying to drop me (Well, c'mon now, Huntsman won't let the surgery take place if your insurance won't cover it, and then that will take care of whether or not you continue here), and can't explain why in the world are the pathologies so different.
"You are going to have a lumpectomy" he says. "Then, depending upon what we find, we'll do more surgeries." Oh really asshole? You don't even know me. How dare you have the cajones to dictate to me what I am doing with my body!
Is this the effing 1950's? God I hate Utah for this! Shovel the nice on-Zanax ladies through the line. Don't give them info, poo-poo their concerns, no reason to "worry" them with actually facts and straight talk.
Well, here's the deal. The surgeon gave me one option. And I don't like it. And I'm not going to do it. In fact, I will head off for what is now a third opinion in the matter. Wish me luck. Wish me somebody competent AND compassionate. Is that really too much to ask?
4 comments:
Absolutely get that third opinion and as many more as you care to. I had my initial meeting with a great surgeon in a quality hospital and then had my 2nd opinion at Sloan Kettering - one of the top notch hospitals, right?
I was disgusted with the doctor I met with. After the exam, he talked with my wife & me for 7 minutes and he got frustrated because I was wasting his precious time. He had given me his decision and had no interest in how I was taking it or any questions I had. My wife & I were shocked! 7 minutes was two minutes more than he had for me.
Someone else told me about a friend who had a very similar experience at the Mayo Clinic and then went on to say it seemed to be a common occurrence in the "leading" cancer centers.
My unsolicited 2 cents is go get as many opinions as you need until you find the right doctor for YOU.
It's your body. YOU get to say how it goes!!! No one else. Doctors are for hire and and when you find the right doctor you will know.
You GO GIRL!!! Use that anger and go get someone who will not patronize you. Ohhhhh I was hopping around mad when I read what happened to you (steam coming out my ears)
Will pray for just the right one.
Do you have your own copies of pathology reports?
OHHHHHHHH how your story resonates with me!!! Stage 1 BRCA and liposarcoma...Doctor after doctor, radiologist, oncologist, etc...all say the same thing about having chemo and radiation even with a clear MRI and PET scan following surgery, as well as clear lymph nodes and clean tumor margins. How do we work full time and manage our lives, I asked? How do I manage at work with fatigue, or the need for just a little downtime? (I am a supervisor in a 911 Communications Center....)
Well, said the radioligist, you just have to get through it and all my patients do fine. Snippy... unconcerned... no options...
So when I cancelled my treatment planning meeting, I was told "not to wait too long..."
If, as I have heard some of my loved ones say, it is true that the pharmaceutical companies are in charge, and all conventional treatment is about the almighty dollar, then we have to find a better way!!!!!
Go, girl...get as many opinions as you can until you find the one person who is willing to give you the time you need, communicate with you on your terms, and help you manage your life...I haven't found him/her yet but I will keep looking till I do!
Jen,
How disturbing about your doctor visit. I will definately pray that you find a doctor that hasn't lost his compassion and reason for being his/her chosen field. As if you didn't have enough to deal with to add the stress of the insurance company. Have you considered contacting someone at the news channels? They might be able to add some "heat" to the situation and hopefully get the response you need. I remember being there with my Mom when she was diagnosed and treated for BC. That was over 25 year ago and she is still going strong! I know that you have it in you to kick this "plague alien's" butt! You are in my prayers and constant thoughts. All my love to you, Liz and Sara.
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