• Have you read through your entire medical record? I've just spent about an hour reading through mine.

    Asked by GregP_WN on Saturday, February 17, 2018

    Have you read through your entire medical record? I've just spent about an hour reading through mine.

    My facility Vanderbilt has an online system where all of my information is posted within hours. I was looking through my PetScan results for over the last 8 years. They describe my having scarring in the lungs, and aorta damage from radiation. NOBODY has ever mentioned this. Makes me not want to read further.

    15 Answers from the Community

    15 answers
    • barryboomer's Avatar
      barryboomer

      NO and I don't want to. When it's over it's over.

      about 3 years ago
    • PaulineJ's Avatar
      PaulineJ

      It would take me a lifetime and frustration.For what I did read it's like fake news. lol!

      about 3 years ago
    • biga17133's Avatar
      biga17133

      Levine Cancer Institute-University has the same system i can go online and read that's how i found out about the tumors above my kidneys doctor has never mention this when we discuss last scan about the ones in lung (3) and on my spine and on hip bone when i ask he said he wasn"t worried about them because they were small ,,ah duh what not worried?

      about 3 years ago
    • geekling's Avatar
      geekling

      Have a good cry and simply continue your life as well as possible.

      I truly believe they keep these secrets because, if people knew, there would be a real demand for better and less harmful and less torturous treatments and corporations would lose cash and control.

      Many doctors, BTW, are self incorporated.

      If you had know what damage would be done to you, would you have agreed to being treated or sought another way?

      I was already involved in other ways because of (it sure seemed purposeful..how could so many doctors be so utterly stupid?) a total lack of medical interest coupled with my individual desire to continue.

      about 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      My entire medical record isn't readily available to me, i don't think. But, i scour through all of the biopsy and scan reports. And ask questions when i don't understand. l found out that i have apparently been exposed to TB somewhere along the road... huh??

      But, sometimes what is in those reports is ridiculous. It seems people don't proofread before sending them out. So, sometimes my scans do crazy things like talk about weird things going on with my arms when the scan was of my lungs...

      The radiologist ALWAYS mentions my SEVERE emphysema. It must be there, but it bothers me not one whit. There are other mentions about stuff that doesn't bother me ... so, i tend to just not worry about it. Some radiologists, especially, mention every single tiny thing they see or might see.

      There are certain radiologists whose reports i discount from the beginning. They are always full of mistakes.

      My oncologist doesn't depend (or maybe even look at) the radiologist reports. He reviews my scans himself. I trust him to be thorough and accurate and honest. He hates for patients to see the radiologist reports, especially before they see him, because of inaccuracies and the fact that every little tiny thing is mentioned. Too many patients freak out unnecessarily.

      about 3 years ago
    • lh25's Avatar
      lh25

      I have looked at mine. So far my favorite comment was along the lines of "Absence of uterus noted on a follow-up scan after my radiation. Assumed surgical removal" Ok, as opposed to what exactly? Teleportation? This was at the same hospital where the surgery and all my treatment was.

      about 3 years ago
    • Ejourneys' Avatar
      Ejourneys

      I always go through those records as I get them, and if they're not automatically available I ask for them. If they're in paper form I scan them in, and if something seems weird I ask about it.

      about 3 years ago
    • Denise's Avatar
      Denise

      I read every test thoroughly and prepare myself with questions for the onc every time.

      about 3 years ago
    • Paperpusher's Avatar
      Paperpusher

      I have read my husband's full chart. Some of the errors are dangerous and some are just laziness. In one spot it says he was a smoker for 20 years-it was actually 43-but does it make a difference at this point? When he was inpatient due to complications from his treatment, one doctor noted "this elderly man". It shocked me when I first read it but he'd gone from 275 to 216lbs and did look a lot like his father before he died. Perspective.I also know his K1 67 number and his grade which we weren't told. I only went back and looked at it to join a FB group for the type of cancer he has. I was a wreck for about a week. I've chosen not to tell him because it won't make a difference in his outcome only in his spirit. He stable for now so why not let it be. Before his diagnosis he was sent to a Urologist. Reading his report was hilarious and infuriating at the same time. Obviously, it was about someone other than my husband. I sat down and wrote the doctor a letter and CC it to his primary. The Urologist called me upset that I had written this letter because now it would become part of his permanent record. I knew that which was my reason for writing it. But when your report says that a patient is circumcised and they're aren't and you're a urologist, what part of his body did you look at? Too good to pass up that one.

      about 3 years ago
    • Skyemberr's Avatar
      Skyemberr

      My hospital allows me to read a he'll of a lot off stuff that I never had access to before!! Fur example, nobody ever told me that when they forced a visual hernia I had that they left clips in there. I also discovered I had broken my nose( probably as a kid) and have a big bone spur in my sinuses. I wish I'd known that because it could explain my difficulty smelling scents a lot of the time now for years.

      I'll keep reading everything I get access to. Some of it makes no difference now, but I really want to have information on every nite my oncologist writes and scan results, etc.

      about 3 years ago
    • BoiseB's Avatar
      BoiseB

      I have never read any of my medical records. When I had hernia repair my surgeon showed me a stack of papers about an inch thick which covered only my esophagectomy. I really had no interest in reading them. As records of my first endoscopy my sister who read the results assures me they are really gross

      about 3 years ago
    • Terri's Avatar
      Terri

      I recently read mine. I found out my original oncologist knew I had melanoma 14 years before I was rushed to the hospital with mets everywhere. This was at Kaiser.

      about 3 years ago
    • Steelebones' Avatar
      Steelebones

      I actually have all of my records (copies) in my possession. I requested them years ago as I planned on writing a book about my experience. I'm getting the idea again. Might just do it finally!

      about 3 years ago
    • PaulineJ's Avatar
      PaulineJ

      Sometimes you're better off not knowing what they put down about you.Better for your health. LOL! It's mostly disorganized,upside down ,nonsense,not true,etc.Example:they got me down as 5'8" which I've never seen.I've been 5'6" 'til I started shrinking as you get older.I'm now 5'4".

      about 3 years ago
    • Ejourneys' Avatar
      Ejourneys

      Turns out this will be the topic of the Feb. 26, 2018 #BCSM (Breast Cancer Social Media) chat. All are welcome. Here's the announcement:
      https://twitter.com/stales/status/967780884899393537
      "Have you read your Medical Record? Our next chat is about Open Notes on #BCSM on Monday 2/26 at 9 PM ET. Join us!"
      Includes a link to this BCSM blog entry:
      http://bcsm.org/clinical-notes-reading/

      From the blog:

      "Notes are the most important information in our medical records, reminding doctors and other members of the healthcare team about our condition and plan for treatment. However, 94% of people in the United States do not have easy access to this information. Clinical notes are about you, and being able to read them is a federally protected right.

      "OpenNotes is the international movement dedicated to making healthcare more open and transparent by urging doctors, nurses, therapists, and others to share their visit notes with patients. This movement does not sell software or a product, but rather provides free tools and evidence-based resources to support clinicians and health care systems in sharing notes with patients. The OpenNotes movement started in 2010 with a study involving three hospitals and some of their outlying health centers and has grown to include more than 100 hospitals or systems. The evidence is building steadily: Reading notes can have an important role in helping patients and their care partners manage their health and health care."

      about 3 years ago

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