Keep A Log Of All Your Tests - Be Obsesive About This Task

[JoelT]

As I go over their many comments and questions on this site I become concerned that in some instances people do not know about their cancer. What I am referribg to is the failure of some of us to get copies of all the medical records. This includes copies of blood work including PSA tests, biopsy reports, scans, bone density reports, etc. It is vital that you have these reports, read them yourself and ask questions so that you understand all the information, and graph your PSA so you can see relative changes.

Put all of this information into a binder so that you have everything, in chronologic order, available to you. This way you will have these records already available when you go for a second opinion (don't give your copy of this binder away, give a copy) as well as the times you will need to recall your history.

Being an educated, smart patient who will extend their life requires understanding your cancer and the only way to do that is by getting all of your records, reading them and ubderstanding them. There should NEVER be a time when you say I don't know what my PSA doubling time is or was, or I don't know how many cores had how much cancer in them. All you need to do is go back to the binder and look it up.

Joel

[erjlg3]

Thank you so much Joel. That is an excellent reminder as we have slacked off from doing this when I became ill.

[JoelT]

Good that you have been keeping your records. In reference to the hospital portal, remember, despite the original reason for electronic medical records, most records are not transportable from one hospital to another. So, you will still need to transfere the information yourself.

[CERICWIN]

A binder? It would take an enormous binder to keep my records; I have a two-drawer file cabinet specifically for all of my cancer records/treatments, etc.

And it's full---- I've been through so many different things since October of 2012, nowhere near the length of time some of my brothers going through this journey have been fighting the good fight against PCa.

I've got incomprehensible stuff from Medicare, which would take a lawyer and a team of legal assistants to decipher, bills upon bills, test and scan results,

and info about all of the drugs I've been on and am still on, which increases all of the time---and I'm way behind on my filing.

But I suddenly realized that with this archive, all filed and categorized, that when I finally croak, it'll all end up in a dumpster, anyway, so I wonder just why I'm doing it.

I do refer once in awhile to the blood test results, specifically the PSA levels that they take every month, though.

I cannot imagine the paperwork for the guys who've been going through this for five, ten or more years. In all fairness, I've had an awful lot of things done in just three years and seven months---and I'm on an enormous number of meds and I now have about seven or eight doctors (I've lost count).

CERICWIN