Words can’t describe…

Words can’t accurately describe how I feel. I’m mad, sad, disappointed…you name it.

I’ve waited very patiently for the last two weeks to hear about my OncoType DX test results. Scratch that. I’ve waited patiently since January 24 for them.

This is a long post so for those of you who know it or don’t want to read that much, just skip down to March 12. That said, I feel like it is important to document this to show just how broken the system is.

Just for perspective, I’m going to give you a quick timeline of events.

1/24/13 – Meet with Dr. Razaq. Like her a lot. She suggests this test to determine if I need chemo. I probably will, but MAYBE not. It will take 7-14 days which times nicely with the removal of my surgical drain since I can’t start with that in. She also refers me to an OU breast surgeon for the removal of the drain.

1/25/13 – The surgeon’s scheduler calls to make my appointment. She needs my medical records. After much confusion, I realize that she thinks I’m trying to schedule a consult for a mastectomy [COMMUNICATION BREAKDOWN 1]. After I clear that up, she tells me that if she needs my Mercy records (the ones that are totally wrong because they told me I had a 2.5 cm tumor and ductal cancer), she will let me know. The MD Anderson records that Dr. Razaq has should be sufficient. We agree that I will call her to set up an appointment when my drain is ready to come out.

2/5/13 – OU chemotherapy department calls me to schedule chemo “as early as next Tuesday.” I’m shocked. Did the test results show a high recurrence? I thought Dr. Razaq was going to call me. I don’t even have a port placed. Nope, turns out that they just don’t talk to the oncologist’s office. She had orders to get it approved through insurance. She did, and now that it was approved, her next step is to schedule chemo…even though I might not need it. [COMMUNICATION BREAKDOWN 2]

2/8/13 – Drain is ready to be pulled. Call the breast surgeon’s office. They won’t see me because they don’t have my records. Yeah…the same records we talked about earlier…the ones that Dr. Razaq has. [COMMUNICATION BREAKDOWN 3] They say the will call me back. No one does. [COMMUNICATION BREAKDOWN 4]

2/11/13 – Dr. Razaq’s nurse calls to “check on me.” I tell her I’m just waiting on the test results. “Oh, I was going to call and check on those today.” We learn either this day or the next that MD Anderson didn’t send the tumor sample because the nurse had not supplied all of the medical release paperwork required. She waited two weeks to follow up. [COMMUNICATION BREAKDOWN 5] Seems odd, but I was patient with having fallen through the cracks. She assures me that she has faxed the paperwork in.

2/12/13 – My OB/GYN pulls my drain. Thanks for nothing, OU breast surgeon.

2/14/13 – BCBS denies coverage of the test. I read the letter on 2/18/13.

2/19/13 – I call Dr. Razaq’s nurse worried about the fact that the test is being run without being covered. She calls me back and informs me that, a WEEK after she said she sent the paperwork, MD Anderson still hadn’t sent the sample. Apparently, she still hadn’t sent what they required – my drivers license. [COMMUNICATION BREAKDOWN 6] She tells me they will start the appeals process.

2/22/13 morning – I’ve heard nothing all week [COMMUNICATION BREAKDOWN 7] so I call to check on the test and the insurance appeal. I call BlueCross first. They have no record of an appeal. I call the nurse. She has just started the paperwork for the appeal (3 days later) and says she will call to see if the sample had been sent (never followed up…again). [COMMUNICATION BREAKDOWN 8]. She will call me back.

2/22/13 afternoon – I’ve heard nothing [COMMUNICATION BREAKDOWN 9] so I call her back. She has most of the paperwork ready for the appeal and she called the testing facility in California. They hadn’t received the sample yet. She hadn’t called MD Anderson to see if it was sent. She called to see if it was received. [COMMUNICATION BREAKDOWN 10]. Turns out, it hadn’t been sent. Again. Temper tantrum from Jenny ensued. Dr. Razaq called me back and asked me to come in the next Monday.

2/25/13 – Meet with Dr. Razaq who apologized for the delay and basically told me I could either wait it out or start chemo even though I might not need it. I chose to wait. She assured me they would be following up on this since it has fallen through the cracks so many times.

2/26/13 – Dr. Razaq calls me to tell me that MD Anderson is overnighting the sample. It should arrive on 2/27/13. Now we wait for 7-14 days.

Week of 3/4/13 – OU Chemotherapy department calls to schedule chemo. Again. [COMMUNICATION BREAKDOWN 11]

3/12/13 – Day 13. I decide to call BlueCross to see where we are with the appeals process. Should be done by now. BlueCross has no record of an appeal. I’m completely shocked. I call Dr. Razaq’s nurse to ask her where we are with the appeal and with the test results. She says, “I sent the paperwork in a couple weeks ago, but I haven’t heard anything. Have you?” I told her that I, indeed, talked to BCBS who said they had no record of an appeal. She said she’d call them right away. In the meantime, I called a patient advocacy number. I spoke with a woman named Sheree who was very nice and helpful. She went to birddog the appeal and to see where we were with the testing. If the insurance hadn’t approved, had they even started the test?

She called me shortly after. Long story short, the nurse faxed my paperwork to the wrong fax number. [COMMUNICATION BREAKDOWN 12] She also apologized all over herself as she told me that the test had not been run because…

Wait for it…

MD Anderson never sent the sample.

As it turns out, the gal who was supposed to process the paperwork either quit or got fired they day she was supposed to send it. My file had been sitting on her desk for two weeks. [COMMUNICATION BREAKDOWN 13]

And, OU never followed up to make sure it was sent [COMMUNICATION BREAKDOWN 14].

I asked the OU patient advocate to call and see if the testing could be expedited. By the end of the day, I hadn’t heard back. [COMMUNICATION BREAKDOWN 15] She had passed that task off to Dr. Razaq, but told me she would follow up with me on Wednesday morning to make sure things were moving along. It is Thursday night, and I haven’t heard from her. [COMMUNICATION BREAKDOWN 16]

This is how the last couple of days ended. I called MD Anderson to verify the sample was being sent that day. I even got a Fed Ex tracking number. I was notified by email when it arrived. Imagine that.

I (with help from my wonderful boss) called the testing facility. Yes, the one that the hospital uses that doesn’t deal directly with patients. I asked them if the test could be expedited. He said it would take 7-10 days to actually run the test. The only delay would be if we had missing paperwork. So, when the sample arrived the following day, called the testing facility to ask if they needed any additional paperwork to proceed. They didn’t. This puts us at next Wednesday-Monday for results.

And the kicker on the whole thing…aside from the patient advocate who had nothing to do with any of this…not one person has apologized.

I mean, it is just cancer.

16 thoughts on “Words can’t describe…

  1. Oh Jenny … this should have not happened. You need to send this post to everyone involved so they can see the timeline of what you have gone through. This is cancer, this is your health, this is your life. I’m not sure who is dropping the ball, but sounds like everyone…. I understand a day or two waiting for tests, but three months? THREE MONTHS???? Call them every hour until you get results. Again the squeaky wheel gets results. You shouldn’t have to do this, but you need to. Prayers for you and your family.

  2. Absolutely maddening! I am so sorry for all this aggravation. It’s especially disheartening to know that in an age of great medical advancements, human ineptitude rules/ruins the day. Maybe their legal departments have cautioned them about apologies—they might whiff of, dare I say, accountability. You will always be your own best advocate. Keep heart. You’re in lots of prayers.

  3. Ridiculous! But I’m so thankful that you have the smarts, the communication skills, the time and brute force to persist through the mind-blowingly incompetent system you’re facing. I’m sad for all the elderly and other challenged patients who don’t.

  4. Unbelievable! Thank God you did their jobs for them! No telling when they would have gotten around to it! Prayers for good news with this long awaited test.

  5. My apologies from someone who works at OUHSC. I truly hope things go smoothly from this point. If you need anything, I’m happy to try and help.

  6. OMG. This is crazy honey. Some heads need to roll for this mess. I’m the crazy aunt with the ax that will do it. Just give me the word. Love you!

  7. Oh, Jenny. It’s absolutely ridiculous that you’re having to deal with such incompetence!!! It’s infuriating!!! Ugh!! Try to keep your chin up and keep fighting, girl! Hugs!

  8. This is totally insane! I honestly can’t believe it and wish you didn’t have to deal with this type of incompetence. Heads should roll. This is your life and who knows how many others that are in your situtation. Real lives and health are at stake here! I’m so grateful that the ball is rolling again and know God will give you wisdom on the decision you have to make.

  9. Absolutely unacceptable. I will make sure others hear about this. I wouldn’t send my worst enemy to that hospital for any type of treatment. I think it’s time to get the word out. OUHSC is an irresponsible and incompetent medical facility. I am really sorry, Jenny. You don’t need this. I could send Keri up there…? Heads would roll.

  10. i’ve been thinking about you the past couple of days. i cannot imagine your frustration and urgency. whatever we can do to help, let us know. xo

  11. Jenny, my blood pressure skyrocketed just reading this – and I’m not the one going through this. I can’t believe such negligence in caring for a patient. I am so sorry things aren’t going smoothly! I’m praying for a breakthrough in this process so you can get things moving!

  12. Heck-to the-no (keeping it family friendly here)!!!! I’ve been keeping up on this situation with Keri and told her i feel the same way about OUHSC. I had a procedure done there once and was told the day of (after i had taken off work, scheduled leave and gotten myself psyched up for it) that i had to pay $600 right then and there or I’d have to reschedule. I asked if i could make a partial payment and be billed the rest since i wasn’t informed of this incredible copay.Nope. And then to put you through this?!? How many other women are there?!? I’m so thankful that things are finally going right. You don’t deserve this. You DO deserve a dang apology! Keri and i will go there together. Heads will definitely roll.

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