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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Monday, December 9, 2013

Give me my data

Today, I went to my oncologist's office to get lab work done.  They do this every few weeks while you are on chemo to ensure your blood levels are good.  It was just a simple CBC and when I was done, I chose to wait for my results.  They told me it would take about ten minutes, so I waited a while, then checked in to see what was taking so long.  

The told me the results were complete, but they could not give them to me.  They had to give them to my doctor's nurse and then she could give them to me.  Of course my doctor was not in this particular office that day, but was instead downstairs.  So they faxed my results from the 3rd floor to the office on the 2nd floor.  I had to walk down there and tell the receptionist what I needed and then wait again for the nurse.  This is the nurse I really don't like to deal with to begin with.  I was so annoyed at this ridiculous process.  It's my blood, I paid for the test, I feel I should be able to get a copy without jumping through hoops to do it!

This is not an isolated incident.  It happens every where.  The doctors seem to assume that all patients are too uneducated to interpret their results.  Medical results are not really as complicated as they appear.  If you take a little time to read up on reliable websites (stick to well known university sites, hospital sites, pub med, etc), you will find there is plenty of information out there written in very basic terms that anyone with a 8th grade education could easily understand.  I find it rather insulting that medical personal feel the need to control my data and determine what I can and can not understand without their interpretation.  I would think at the very least, they would eventually, over time, determine the type of patient a person is and use that to determine who needs hand holding and who can read their own test results.

I came home and I saw it happening again.  My genetic data was ran through 23andme.com.  This is a website that offers regular people like you and me the option of paying to have our DNA analyzed.   They not only create a raw DNA report you can download, but they also compare it to scientifically proven research that shows probability of disease based on genes or gene defects.  The FDA has recently sent them a letter asking them to stop selling their kits.  The people making the biggest stink about it were people who think that normal people are not educated enough to interpret their own data.  Here is a quote from an article regarding the ideas of one of the biggest anti-23andme antigonists: 

"Greely believes that interpretation is everything. His major concern with 23andMe is that consumers aren’t adequately equipped or informed to interpret this information — the space is still so nascent that even the experts are constantly learning. In the past, genetic information would typically be shared with a physician, who would walk the patient through the results. In the near-term, the FDA may insist on an approach that brings far more experts into the equation."

The full article is here: http://venturebeat.com/2013/12/07/23andme-remains-defiant-despite-fda-issues-we-are-not-going-anywhere-exclusive/


  1. I think the tendency to hand-hold is frustrating. The government inserting itself into the 23andme project needless. The truth is, whether you have a doctor there or not, if you are the type to go off the deep end because of a predicted risk, you are of that type, and if you are the type to be pragmatic about the results and just wanting the knowledge of risks and what to watch a little closer, then you are of that type. No government regulation is going to change who you are by your nature.

    And if you are the first type, you ought to be smart enough to take your results and hotfoot them into your doctor's office and let him/her explain them to you in a way that comforts or validates you.

    And if you are that first type and you are not that smart, then so be it!! You have free choice. Or should!!

    I've had similar experiences with bloodwork or other test results -- someone has the information I desperately want and they won't release it because it hasn't gone through a doctor first. A nurse called me at work a handful of years ago and told me a test on my son showed possible mild spinal bifida, but another test would have to be done to confirm or dispute the diagnosis. Waiting on those test results was an eternity. They were available quickly, but the doctor at Cook's kept sitting on them. Even the technician who ran the tests probably knew the results, but they aren't allowed to even hint (although the really nice ones will!)

    Also, my last mammogram a while ago, I got a letter in the mail saying the results were a concern and one side needed to be redone -- it was a Saturday morning I got the letter -- the radiology place was open and could have redone the mammogram that day (my preference) but because a doctor wasn't available to write the order, or even tell me what the concern was, they couldn't tell me anything at all, and I had to wait until the following Monday. Seems a small thing, but I don't have to tell you what a wait that was for both my husband and myself.

  2. Making someone wait for test result that is life altering, like your son's spinal bifida or your mammogram results, is torturous. I used to try to follow the rules and wait until they called me. I'm done with that. I ask when they will be ready and get rather hostile if they won't give them to me. I've found that if your doctor won't give them to you, you can usually go back to the place that performed the test and demand them and they will give in if you don't back down. The issue with my lab results is the lab is in the doctor's office. So there is no way to bypass the doctor.

  3. I will keep that in mind. Such a pain. I understand why they don't let the techs read the test as administering it, but once the findings are official, it shouldn't have to go through the additional gate.


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