Unhappy with port placement

I really didn't have much pain but took a Tramadol left over from mastectomy.

I had my first infusion immediately following my port placement. I have had the port since July 2015 and at first it was very painful and I used the emla cream. After I'd had it for three months I went for a second opinion and I didn't realize they would want to draw blood and I had no cream with me. I just let them access it without any numbing and guess what: it didn't hurt. I've never used the cream since. Now, as far as the post being really visible, mine isn't so visible but that could be because I've got, ahem, extra padding. The tail that goes over my collarbone is pretty easy to spot though.

Kicks is right. Make sure anyone trying to use your port is well trained & familiar with the new 'power port'. i always go to the infusion center to have my port accessed and then head over to other locations for PET or MRI or CT testing w/contrast. When the testing is done, I go back to the infusion center to have the port flushed & access "dangles" removed.

I just got an unanticipated lesson in de-accessing my port and, as longtermsurvivor says, it's a simple procedure. I was near the end of my second week (out of five) of continuous infusion 5-FU when the fanny pack holding my pump and infusion bag fell off the night table. It was 2 AM and I didn't notice a problem then, but at 5:30 it was clear that the bag had sprung a slow leak and there wasn't enough left to get me through to Monday morning. Besides, I had drips of chemotherapy here and there and that's a real no-no.

After I looked at the directions for handling spills I called the 24-hour line for guidance and they sent out a nurse to help with the toxic waste clean-up. I did recommend that she wait for daylight. Did I mention the snowstorm and icy roads? She was very helpful and said we'd done a good job following instructions but thought I needed help for getting the tubing and needle out. She showed me how to wear gloves to remove air from the saline and heparin, clamp the tube, disconnect the tube from the pump, clean everything obsessively with alcohol wipes, flush with saline, clean obsessively again, flush with heparin, remove the bandage and take the needle out of the port. Really, it's easier done than said.

So glad to find this port thread. The last two times I have had chemo my nurse has cautioned me to keep an eye on the port to make sure it doesn't poke through my skin. She said if it does, to call immediately as this could lead to a serious infection. When she repeated that warning to me yesterday, I asked what they would do. She said they would have to remove the port. It is a power port and I have had it for about 5 years. The problem is my weight loss. When I had it put in, I was probably about 160 pounds. I am now 114. So, I am freaking out. I sent a picture to my sister who is a retired hospice nurse. She suggested I call tomorrow and talk to the nurse about getting a smaller replacement port. I'm thinking, what if I'm three hours away at the beach and it pokes through? Has anyone else ever had this happen or heard of it? I love my port. It has been my best friend through 5 years of chemo.

Thanks, Stephanie, for your response. I did look at yours and they do look pretty similar. I just talked to my oncologists' nurse and she calmed me down a little. She said just to keep an eye on it. She did tell me the chemo nurse who has brought this to my attention two weeks in a row is quick to jump so not to worry too much. I asked if I should wear a bandage over it and she said if it made me feel better. I worry because it's right where the car seat belt goes across. I do wear one of those soft covers on the seat belt strap and I'm sure that helps. Whew. So much to worry about. Thank you

Shetland Pony, Thanks for that tip. I'll get one tomorrow. Never thought of that and I've had the darned port for 5 years! Really appreciate that!

Bumping forward for newer member having a port installed soon.

Lots of good descriptions and photos of different members' experiences here!

warm healing wishes, Stephanie

Lumpy,

That sounds weird, and might be from the end of the port catheter rubbing on something. Have you told your medical team? That sounds like something they might want to know ASAP.

My port installation felt like I'd been kicked in the chest by a horse. I have been, so it's an easy analogy for me. But, my pain was understandable. Yours is seeming a bit hinky.

You can call your doc at any time, day or night. There's always someone covering "high value" issues, and pain is always high value.

Jennifer

Thought I would post an update: Medical team was dismissive about my port placement related pain when I just called in. Since I was in "forget-the-chemo-and-shoot-me-now" pain, I went to urgent care. They have decided that I sustained a neck injury in the course of the port installation. They loaded me up with I-feel-nothing drugs (which is good IMHO) and we hope that it will resolve with time and TLC. Arg! This is exactly why I didn't get the port before. I know that I have a history of neck trauma, arthritis and sensitivity which makes me susceptible to neck injury. That is my unique situation. Sometimes it seems like the docs can't see past what their "generic" patient should be like. It can be really frustrating! Being your own effective advocate seems to require loads of patience and energy. As long as it gets better, we're all good. I'm trying not to contemplate an alternative. One more bump in a rocky road! Thanks for your concern!

ARG, indeed, lumpie. Glad you got the drugs to numb the pain. It might be a good idea to ask for physical therapy once they have the pain under control. It should not have happened but now you have to be proactive in the healing process. I hurt my neck during a mammogram a few years ago, which radiated pain, tingling and numbness up and down half my body. I had steroids, PT, acupuncture and massages, which together got me back to normal eventually. We are so stiff with the meds we take, they have to be extra gentle with us.