Save your Paperwork. Save any paperwork that describes your cancer and treatments. Most hospitals will also give you copies of your scans. Some hospital website will allow you to download you files, Medication, treatment notes. When all else fails ask for paper copies of your records. I have found that paper copies sometime have a little bit more information than the website.
I have bounce around from Private hospital to VA to private hospitals. I have had many doctors due to retirements, moving, changing medical plans and money. Some hospitals don’t communicate well with others, different software and computer issues, and some just go out of business. Hope this helps, it has saved me a few times.
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GoEZ
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Hi GoEZ,
Great point, most hospitals and clinicals offer "Patient Portal" online Web access. The Electronic Health Record (EHR) application that provides complete patient records for us PCa warriors. For example, Epic, an EHR vendor used by many academic hospitals provides access - it's called MyChart.
MyChart (patient portal) will have lab results, diagnostics/imaging reports, visit summary, medical list and other patient management services, email, appointments, prescription reorder, record print/download, share online records to others, etc.
Even smaller clinics will have similar "Patient Portal" services, supported by their specific EHR vendor, for instance like eClinicalWorks.
I have all my records accessible online since 2013, it's not consolidated into one "Patient Portal", need to login three different sites. But, since most of my CT and MRI images are from Shields, have online access to them, consequently, see images when contained in my prostate - to metastasis, before and after...
I wholeheartedly agree with the importance of maintaining good medical records. I make it a practice to download PDF copies of all info available via MyCharts at the two cancer centers I visit. I scan all hard-copy info, such as pathology reports, and keep all of it in a set of digital folders with file naming conventions that allow me to find any info from any source for any specific time. So far, I have only made it a practice to get digital copies of scans when I wanted to share them between different medical practices. (In my case, the scan interpretations are provided at MyCharts, so other than DVDs for the time I might decide to move to another cancer center, they do not provide any utility to me. This may not be the case for those with more advanced cancer.)
Since I have two cancers and get labs from each, I consolidate them all (15 years worth) into master spreadsheets and provide updated copies to my MOs at each appointment. In addition to the spreadsheet printouts, I include long-term graphs for key lab components. (Unless I am missing something, the graph function at MyCharts seems to not be very useful.)
For example, I have a very useful graph that combines PSA and T together that clearly shows their interrelationship over time. Where appropriate, any basic spreadsheet with chart/graph functions also allows the addition of trend-lines to the graphs. I like to keep most graphs small, so I can do side-by-side comparisons of lab components.
There are apparently many sources of boilerplate lab spreadsheets for those not skilled at creating them from scratch. I got the framework for mine that way, expanded it for my needs, and then added the graphs and other purely graphic enhancements.
Good records, organized for quick, convenient access, make life much less stressful, For Sure! And who's not for less stress. Be Well -cujoe
Your spreadsheet sounds so much better than mine. I just use the spreadsheet as a log. Tracking dates, PSA numbers, and doubling times. I did conditionally format so that anything under 90 days turns red. I found this comforting to see visually what is happening over time. This has kept me from jumping at every little movement of my numbers. It also gives me credibility with my doctors when I start getting worried about something changing. The doctors just don’t have the time to study every detail. Most times they were surprised to see the chart of my PSA going vertical. I wonder if there is a way to show others how to do this data collecting. Thanks for your info.
Since my "other cancer" is a blood cancer, the spreadsheet is really useful for it, as there are many more lab results that need to be monitored. The one I use for PCa that tracks PSA & T and shows them together in a combined graph is one I created from scratch. Creating & modifying spreadsheets does require some level of knowledge about them, but there are plenty of self-help books (?? for idiots, etc.) and on-line question-answer providers to help those first-timers/old&rusty-timers master the essentials need to create/modify simple ones.
As for helping others, maybe someone here (Darryl??) knows of a downloadable source for our group. In the meantime, I'll see what I can come up with.
Good idea to ask for the physicians summary or notes after each visit, these are generally not available through your patient portal, at least not by my healthcare providers. On more than one occasion I have found errors that I had amended that pertained to functional status or the doctors interpretation of something I said. Sometimes mistakes are made due to the doctor/patient daily treadmill. As a patient you have the right to ask that your record be amended.
So true. I have found records that not all the details were put into the record. The doctors just don’t have the time to watch all the detail. Plus Doctors sometime have a different interpretation of what is done to you. (Different practices, locations, and quality of the doctors). Showing the doctors records gives them a better idea of where I’m at than just relying on my memory or understanding.
One of my oncologist (not the one for PCa) now posts his visits notes in MyCharts, although I find quite a few errors in some of the information he reports in the notes. The errors are not specific to my labs or medical condition, but relate to personal and family details that could be relevant in a historical review of my disease. It is a bit frustrating, in that all of this information is included (correctly) in the written Patient Updates I provide at every visit.
I think GoEZ has it right about doctors not having time to watch all the details. And, to be fair, none of the missing/incorrect information has a direct bearing on my treatment, or in the case of my CLL, the welcomed lack thereof.
I thought I remembered a reference to downloadable spreadsheets for labs over at HU's CLLsupport site and, sure enough, their excellent Administrator, AussieNeil, has an XLS & ODS versions available for download. These are updated versions of the heavily modified one I got from the same source (now-defunct CLLtopic website) many years back.
The two links below will take you to a downloadable spreadsheet and information to help you interpret blood work labs. (Since this is coming from a website for CLL, the information has no specific references to PCa.) The first link, "Tracking your blood test results and much more - new workbook available!", explains the history of this particular spreadsheet and the improvements that have been made over time.
The second link (referenced in the first) takes you to an excellent page entitled "Understanding your blood results". That page has a good 13 min video by by Dr.Susan Leclair that explains the CBC results. Once again, since this is coming from a site for CLL patients, it explains details about of the components that are specific to that disease. However, it also provides a lot of general knowledge that helps explain crucial aspect of your blood chemistry and a lot about how your immune system works.
There are links below the video that link to other sites (some CLL-specific and some general info) to help interpret lab results. Below these links is a chart that gives a brief summary of each lab component of the CBC (with differentials) and CMP (i.e., electrolytes) and immunoglobulins (very important for blood cancers).
At the bottom of the page are the links to XLS & ODS versions of the spreadsheet. (When I tried to download the XLS version, I got a security warning, but the ODS version came through just fine.) BTW, for the novice, the file opens with text displaying source/help info. To get to the actual spreadsheets use the tabs at the bottom of the opening page. (When you save the file on your computer, it will return to that location next time you open it.)
I'm not sure how this spreadsheet is set up, but some fields that are in headings and include formulas are likely "locked", so that you cannot inadvertently change them. I also don't remember being too impressed with the graphs it produced, so I redid those to get something I liked better.
Tracking your blood test results and much more - new workbook available! - CLLSA - AussieNeilAdministrator
!!!MOST IMPORTANT OF ALL!!! if you take the time to load this spreadsheet with your own data, MAKE REGULAR BACKUPS TO PRESERVE YOUR LABORS and protect your data.
Good Luck & Happy Valentine's Day! Eat some Dark Chocolate & Be Well - cujoe
I have the feeling the MO has personal file that is not available on internet portal. I am almost positive of that. Am I paranoid and descending into delusions?
Thats why every once in awhile you should ask for your printed files. I did it for my social security and it had more detail that helped me. I'm having problems now that the VA is moving me to a private hospital. My new doctor calls asking for records they have trouble getting. One old doctors practice is no more and my records are in limbo. The records also help you refresh your memory. You can see where you started and where you are now
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