IV Complications and the Challenge of Being Heard

I know a lot about being a person living with cancer. I’ve been doing it for over 10 years, having started treatment for Stage IV cancer back in January 2015. I’ve had many opportunities to be my own best advocate, sometimes doing it well, sometimes poorly.

Because I have what I call “good patient” tendencies, I have to watch for times like these: not fully understanding what I’m being told but telling myself I’ll “google” it later; realizing I haven’t asked basic questions about the step-by-steps of a procedure; waiting until something gets worse to speak up; not taking up the space and time I deserve in the healthcare setting.

Not a single one of these behaviors leads to satisfaction with care.

My most recent cancer treatment session brought all of this up for me because even though I communicated my concern several times, I ended up with infiltration into the surrounding tissue during an IV of Herceptin. I was lucky it was “just” Herceptin, which isn’t a vesicant drug and unlikely to cause harm (though still possible). If a vesicant drug escapes the vein during treatment, it’s called extravasation and may require extra care to prevent or reduce lasting tissue damage.

I had learned of extravasation while receiving a taxane via IV rather than a port, because my port had to be removed due to clotting. Extravasation doesn’t happen frequently, but it’s important to know the signs of both infiltration or extravasation so that treatment can be stopped and risks reduced.

On this day, when the infiltration happened, I told the chemotherapy nurse that the IV didn’t feel right, but she assured me that there was blood return, plus I could taste the saline when the line started. I didn’t like how the IV placement felt, but my treatment currently takes under an hour, and I figured I could deal with it. Mistake 1: Denying what my senses told me, which was that something was wrong despite the normal signs of a good IV placement and reassurance from the nurse.

When an IV drug infiltrates tissue, two of the first signs can also be things that may occur normally, depending on the drug being given: pain or discomfort at the IV insertion site and coolness. Discomfort at the IV site can also happen for reasons like what vein has been used and even the impact of cold air temperatures or mild dehydration. Coolness at the IV site is a standard feeling for me when getting Herceptin, but I did feel like the site was colder than usual. Mistake 2: I looked at the area around the IV, decided it looked alright, and figured I was having some anxiety, which is also not unusual for me. So, I covered my arm with a blanket to warm it up.

Within a few minutes of this, I looked at the site again because the discomfort there felt a little more intense and saw there was possibly some swelling and the skin was paler. Swelling at the site and paler skin are additional indications of infiltration and extravasation. I called my treatment nurse over and told her, again, that something was wrong with the IV. She looked at it, reassured me again that it was fine, and turned to another patient. Mistake 3: I was certain there was infiltration, but I brushed it off in that moment.

Having told the nurse twice that I thought there was something wrong, I waited another 30 seconds and again looked under the blanket keeping my arm warm. Now there was clearly defined swelling around the IV. I loudly called for one of my regular treatment nurses.

The Herceptin was stopped, the oncology pharmacy was consulted, the IV was removed, and my arm was bandaged. I was told that there wasn’t much risk but to watch for discoloration and to call immediately if I noticed anything unusual with the site or my arm over the next few days. A new IV was placed in my other arm, this time by my familiar nurse, and everything went back to normal.

But I was left with the knowledge that despite advocating for myself, I still had a bad, could-have-been-worse experience. I knew the signs of infiltration and extravasation; I said something twice to my treatment nurse. Afterward, while finishing treatment with a new IV placed in my other arm, the nurse told me that I should have said something earlier. I replied that I had. Unfortunately, she repeated that admonition as I left. It’s no fun to be gaslit about healthcare, and it’s no fun to speak up and not be heard.

As has happened in the past, I’ll add this experience to my understanding of self-advocacy. A reminder that most of us know our own bodies far better than anyone caring for us. I could have been more forceful, and next time, rightly or wrongly, I expect I will be. Here’s to good care, healthcare providers who listen, and properly placed IVs.

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