I would like to share with you a response I just posted to a question posed by a woman in the Prostate Problems mailing list (PPML, see acor.org). The woman’s father underwent RP (surgery) today, and she wanted to know how soon she could get a copy of Dad’s “Surgical Pathology Report.” This woman is way ahead of the game, because she even knows what to ask for. But before I say anything more about the importance of getting and reading medical records, let me include some important remarks made by the moderator of that newsgroup, Charles Clausen, in reponse to the woman’s question:

CC: Hospitals get very busy and don’t always communicate everything you would like to know. No one told me they had removed nerves on one side of the prostate. I found that out a couple of days later. I had slept a lot directly after surgery, and a couple of days afterward I was sitting up in the early morning, chatting with the nurses at the nurses’ station and sharing their Easter candy, when I noticed a folder on the desk with my name on it. So I took it down and read through it — and it was here I found out that nerves had been removed, plus other things.

Me: Apropos of this, I suggest that everybody get copies of and read all of their medical records. Rebecca is ahead of the game in that she even knows what a surgical path report is. I didn’t — just knew what the important issues were to ask the surgeon at our first post-RP appointment — about the margins, organ confinement and Gleason score. In hindsight, we would have been better off reading the actual pages.

My advice is always to ask your doctor or his assistant as you go along for copies of your medical records. Explain that you want to have them on hand for your reference and in case you should ever need to consult another doctor. (Be careful about this, because there apparently are docs out there who think asking for your medical records betokens a lawsuit.) Then organize all the records chronologically in a binder. (Don’t staple and clip the pages, because they may need to be copied later.)

I assure you you do not want to go through what we did. We had to wait months for the surgeon to even give up my husb’s medical records after a routine request didn’t get us anywhere. Eventually, at a year-and-a-half after husb’s RP, we found out that he had a positive margin (“Surgical Report”) and that only one nerve had been spared (“Operative Report”), contrary to what the surgeon had told us. Note that husb’s Surgical Report said only that there was tissue “inked at the margin.” I read that passage a number of times before it dawned on me that that might be medicalese for a positive margin. I was right. An oncologist told me so on follow-up.

The importance of these findings is obvious: Re the positive margin, had we known about it post-op we might have opted for adjuvant radiation therapy, which I’m a big fan of. And about the “nerve bundles excised on one side”, that would have made my husband feel better about his post-RP inability to perform sexually. He would not have blamed himself so much, knowing that he was “walking on one leg,” so to speak. As it was, husb just thought his attitude needed improving.