The importance of having your own medical records...

[Mary]

Get your records. Empower yourself.

[Mike]

Mary, you don't know how many times I've wanted to get my hands on my medical records. I've been to so many doctors throughout the years it seems like an impossible task.

One of the main reasons I wish I had a copy of them, aside from the very interesting information you find out, is that I have a hard time remembering every doc, surgery, treatment, year, place, etc. whenever I go to a new doc and have to fill out that darned patient history. I've thought about just typing it all up and then just printing it off any time I go somewhere new.

[Celeste]

   I have copies of all my scans, procedures,and some office notes. It's pretty interesting when you get copies of the Dr's office notes cause you really know what he is thinking.
My breast surgeon left the country and he  left he gave me all his operable notes. That
was interesting cause you find out all the detail of your surgery, but you need a medical dictionary to read it. Once you get all previous data it's easy to keep up. If you ever want
copies always go to the medical records department for any copies, sometime you pay and sometime you don't.

  Celeste

[Michelle]

I have a friend who has juvenille rhumetoid arthritis----it was discovered only 12 years ago---she was in her 30's!!!  Well, it has settled in the soft tissue of her EYE....can you even imagine?  She was to go to a new specialist this coming week.  When she called to get the 12 yrs of records....they were nowhere to be found! 

UGH.
Michelle

[Mary]

Michelle and Mike both made interesting points that I wanted to address...

First, Mike, wouldn't it be easier for you now, years and years after cancer, if you had kept a notebook or file and written down the name, address, and phone number of each doc you saw??? I do this now in a journal. I usually add the doc's specialty and when I saw him as well.

Michelle, your friend's medical records were mysteriously lost when she asked for them 12 years later. What if she already had them in her own file cabinet? Problem solved.

The key for current patients is to keep track while things are happening! It's one more thing to add to your "to-do" list, but it's something that you actually are taking control of and handling...it's not something that is just happening TO you. :-)

[Mary]

This is just another reminder to everyone - as Cindy has pointed out, it will be very difficult to get your medical records twenty years from now. Doctors are only required to keep records for a certain amount of time. Many of us will NEED them for future medical treatment. For example, what if you get a  breast or prostate cancer that many older adults get, and your doctor wants to do some chemo or radiation. How will he know what is the best choice for you if he doesn't have your history?

Here are some of the things it will help to have later down the road:
- pathology report of your tumor
- surgery notes
- records of each chemotherapy drug you were given and how much (specific dosages)
- records of type of radiation you received and the dosages
- blood lab results at diagnosis (with cancer), lab results later after treatment (without cancer/new healthy)
- scans of your tumor or films if possible
- names and addresses of each doctor seen

[Olga1963]

And here I thought I was paranoid with that. I started a file with Sonya the moment she was diagnosed with previous blood test results and I worked my way up from there , I got copies from all the scans , MRI and x-rays that we have done ( except the ones in the hospital ) many many blood tests , all of the biopsy , MRI , x-ray, scans results reports , medications , and even doctors notes in her chart at the oncologist . I have taken that big fat chart they have on her many times to read through while she was being treated , I took pics and made copies for myself , some people may think that I have gone overboard but that is ok with me , at any given time I have all the information with me.