Surgical Consult #2

 This post will be more messy than usual.  Just want to get out some of the facts/nuts/bolts of the latest.

While I very much appreciate the follow up of staff re: the errors in my medical records, enough issues have arisen that it was clearly time to move on to a different practitioner.  I have a new consult scheduled for next week.

I also had a genetic counseling appointment today and blood drawn for the testing.

Did you know there is a law that your health insurance cannot discriminate against you based on your genetic testing?  Life and long term care insurance can, but not health.

Lots of stress and ups and downs, but I feel really good about where I am now.

I'm uncomfortable about pushing out the start of treatment, but I am far more uncomfortable rushing into treatment with a practitioner with whom I did not fit and without genetic information that could potentially affect my treatment now and further choices down the road.

Errors

The mental work of being a cancer patient is exhausting and overwhelming.  I'm tired before I've even started my physical treatments!  Managing emotions is almost a full time job.  Then there's the matter of research, understanding my condition, my options.  And balancing all of this with regular daily life.  And trying not to be completely self-absorbed. 😉  It's hard, then, when I have to add to this list great vigilance when it comes to reviewing my medical record for this adventure and making sure everything is accurate.  I had to do some patient advocacy for myself today.  Excerpts from my email below:

*******************************************************

I am a newly diagnosed breast cancer patient. ... I received an email notification that my visit notes were available in electronic medical record. ... I discovered many errors. ...

I am reaching out to you ...

• to document my concerns;
• to become informed of the process for correcting errors in the record;
• to hopefully receive some reassurance that these errors in no way represent the quality of care I can expect going forward.

I printed out the notes ...and notated each of the errors.  ...pdf with my handwritten corrections is attached here.  ...specific concerns...:

1. The number of errors in my notes.
2. The location of my cancer is listed in the "Impression/Plan" section incorrectly ..
3. HER2 status is incorrect.  
4. The notes claim that certain topics were discussed in my consult when they were never mentioned.  At all.  
5. ...

All of these concerns are documented in the attached file.

... It is difficult to feel safe and have confidence in my care given these circumstances.  

 I look forward to working with you to follow up on my questions and concerns.  Thank you for all you to do help patients be heard, be safe, and be as well and healthy as possible.

******************************************************

Thankfully, I received the first response within 15 minutes of my email and a second response about 20 minutes after that.  Here's hoping that things smooth out, at least in these kinds of things.  

As with all things on this adventure, I choose hope and look forward to the future.