Ok, the first time I heard this word, I confess that I was confused. Extra, what? And then I learned more and I knew that I needed to share.
The formal definition of “Extravasation” from the National Institute of Cancer is: “The leakage of blood, lymph, or other fluid, such as an anticancer drug, from a blood vessel or tube into the tissue around it. It is also used to describe the movement of cells out of a blood vessel into tissue during inflammation or metastasis (the spread of cancer).”
Basically, in my words, extravasation can be caused when the nurse or other person inserting an IV needle misses the vein or target and whatever is in the IV goes into the surrounding area instead. This happened to me once when I was going into surgery — the nurse had inserted the IV in the pre-op area and when the “happy juice” was injected into the IV, the inside of my elbow suddenly ballooned. It wasn’t a small thing either and it was pretty freaky looking and freaked me out when I was already anxious. The anesthesiologist accessed a vein in my hand when I got into the operating room, I got my happy juice, and I haven’t had any issues with my vein or that area.
What if instead of happy juice, the injection was nuclear material? Or something else?
For those of us with Stage IV Metastatic Breast Cancer (MBC), we get scans regularly that include injections of isotopes of different kinds for contrast. Radioactive isotopes. And, for most of us, those injections are given in our veins (side note, another good reason to ask for a power port!!). I’ve not personally experienced extravasation with nuclear material, but here’s some information I received from Rx 4 Good about what could happen:
Pretty scary looking, right?
Of course, I put my advocacy (and lawyer) hat on and started to ask questions about where this is reported to and what is done about it and to my surprise, a U.S. Nuclear Regulatory Commission (NRC) policy allows providers to keep extravasations hidden from patients, treating physicians, and NRC itself.
Any policy that allows anyone to keep something about my care or a potential issue from my attention hidden raises some serious red flags for me. Especially since it’s already happened once to me and no one said anything about it. In fact, after I learned about this issue, I accessed the surgical report from that surgery and it wasn’t mentioned at all. My complaint to the hospital about how I’d requested my port to be accessed rather than my hand and was ignored talked about it, but nothing made it to my file.
Again, from Rx 4 Good:
Current NRC policy specifically excerpts incidents like these (pictures above) from medical event reporting because the NRC was told in 1980 that extravasations are “virtually impossible to avoid.” As a result, information is not shared with patients, their treating physician, or any regulatory body. Centers are not required to actively monitor radiopharmaceutical administrations beyond a visual inspection of the injection site during delivery, despite the fact that radiation injury may not become evident until weeks or months later. Active monitoring of radiopharmaceutical administrations can alert clinicians to possible extravasations. Immediate awareness of high doses can help clinicians take mitigation steps to minimize the damage to the patient’s tissues.
NRC knows that extravasations can be avoided but has yet to change its outdated policy. Significant extravasations, like the cases above, should be reported to the patients are affected, their healthcare team, and the NRC.
This may seem like a small issue, but when I add up the amount of times I’ve been given an IV in the four (4) years I’ve been living with MBC, I start to hyperventilate a little. On the one hand, I’m pretty thankful that this has only happened once to me in all that time that I’m aware of and, on the other hand, how many times it could have happened is pretty scary. Add in a dollop of secrecy and I’m on my way to a full blown panic attack.
While I get the concerns about having to report something that happens without anyone being in the “wrong,” the fact that a patient might have nuclear or some other material eating up their skin in addition to whatever else is going on, is just all kinds of inappropriate. Why should patients have to wonder?
Here’s a great letter that has been sent to the NRC by the organizations listed in the header — maybe YOU know an organization that might want to add their name to the list!
Bottom line? We as patients, especially those of us who will be in treatment forever, need to be armed with information. Nothing should be hidden from us, ever. Empower us with information, I say, to all that I am in contact with.