My port catheter has retracted. Huh?

This week I had to visit my surgeon due to a retracted catheter coming from my port. It ended up not being a big deal. But I will have to keep an eye on it in case the surgeon has to do a repair. In this post I will share how I found out about the retracted port and my experience to figure out what the heck that even means.

My current adventure began last week; specifically on Tuesday, November 22, when I went to see the pulmonary doctor. Actually this adventure really started a few months ago I had been referred to a Pulmonologists for my breathing problems (some of which are documented here). I had to wait a few months in order to see the pulmonary specialist. Of course in the meantime a CT scan found my windpipe was being restricted by a lymph node. Additionally, just a few days after my first round of chemo the lymph node pushing on my windpipe had shrunk and allowed me to breathe again (hallelujah!). Even though my breathing was better I decided not to cancel the appointment with the pulmonologist. I still have some breathing problems, sleeping problems, and questions about how my lungs will recover from the cancer that spread into one of them.

The appointment with the pulmonary doctor actually went pretty quick. He looked at what was done so far and wanted to start off with a sleep study (which I’ll do in a about a month or so) and an X-Ray. After those steps are done he will decide what more should be done about my breathing problems. Thinking back I completely forgot to ask him about the effects of the cancer on my lung; oh well, I’ll save that for next time I see him.

Later that afternoon the nurse called me back to let me know the x-ray had come back looking good. Fluid that had been in my lungs in the past was gone. That was good news. All I had to do now in regards to the pulmonary doctor was wait to have my sleep study. It never occurred to me that having an X-Ray would lead to a visit with another doctor.

Late Friday of that week the results of the x-ray were released to my online chart. I don’t actually get to see the scan, but I can view the lab tech notes. Out of curiosity I decided to log on and review these notes. Here is part of what I saw in the impression section:

1. The catheter of the right chest wall port has retracted and the tip now projects in the region of the confluence of the right IJ vein and innominate vein.

Huh? My catheter had retracted? I couldn’t help but wonder what that meant. It sounded potentially bad. The catheter being referred to in the notes goes from the port just under the skin on my chest, up into the jugular in my neck, and down to just outside the heart. It is through that port and catheter that I receive my chemo treatments. I began to worry that a problem with my port would cause a problem with my chemo IV infusions.

I did try calling the oncology office, but it was late and they were already gone for the day. So I set up an appointment to speak with the surgeon who put in the port. There were problems with my port install originally, so I though it would be best to hear from him what was going on. Plus I like the surgeon. He knows how to explain things to people who don’t have a medical degree (something not all doctors are able to do).

On Wednesday of this week I had my appointment with the surgeon. I am glad I chose to speak with him. He was quickly able to reassure me there wasn’t a major problem. To explain the retracted catheter he first showed an x-ray of my chest that had been done about a month and a half ago. Below is my attempt to draw what I saw on this x-ray.

port

The triangle is the port, which is just under the skin on my chest. Connected to the port is the catheter. It runs under the skin up to the base of my neck, where it enters the jugular and travels to the heart. The surgeon said in this x-ray the port and catheter look exactly like they are supposed to.

Below I have attempted to draw what I saw on the new x-ray.

portretracted

This x-ray shows there is a loop in the catheter between the neck and heart. The formation of this loop means the catheter is no longer right next to heart. Or in medical speak it is apparently “retracted”.

The surgeon noted catheters can retract, but he hadn’t seen one retract this far before. It could have been caused by scar tissue. We also talked about whether my lymph nodes shrinking had caused issues. I had a LOT of lymph nodes in my chest which had grown large and hard due to the cancer. When those lymph nodes shrunk the very topology of my body would have changed. It’s possible we will never figure out exactly why the retraction occurred.

Of course then I asked what had to be done about it. He noted the catheter did not appear to be pinched at all and it should work fine. If needed he can do a simple procedure to straighten out the catheter. Basically that would mean a small incision by the port, where he would stick a wire down the catheter to force it back into its original position. Even though that would be a minor procedure, he really didn’t want to do it while I’m still in chemotherapy. The surgeon also noted that when my port gets flushed during the next round of chemo the catheter may be forced to straighten out. He didn’t think that was likely, but it is possible.

In the short-term the surgeon said we wouldn’t do anything about this retraction. If problems with flow are seen during chemo then he would fix it. But if the chemo IV flows fine he would rather wait and do an x-ray in six months to see how the catheter looks then. In the short-term he said a retraction such as this really isn’t a big deal. However over the long-term, such as ten years, if I am still using the same port he will want it fixed sooner rather than later. He explained that as times goes on the bend in the catheter’s rubber could begin to degrade and cause a leak. It really depends on how long I will keep this port and catheter in. Right now I have one or two months of chemo left, plus two years of maintenance infusions. Hopefully after that this port comes out.

I guess I am back to my rambling ways as this post went longer than planned. In this post I shared my experience of finding out about a retracted catheter. More importantly I shared my experience learning what the heck a retracted port even is. Its times like this I miss the days when I would go years without seeing a doctor.

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