Should I have my port removed, or keep it?

AlaskaAngel · 09-17-2008, 10:06 AM

Hi,

I had chemo in 2002 prior to the common use of trastuzumab and had my port for that. After that, I started a clinical trial with draws every 3 months for blood for a trial that is trying to find better markers for bc survivors who are at high risk for ovarian cancer. So I kept my port in for those draws, and got a flush every time that way. My port worked great and was never a problem.

The trial draws became less frequent this year, and are now every 4 months. This is not frequent enough to keep my port flushed. At my last draw, the nurse was top notch and it still took many tries before it would work. As a result, my insurance was billed over $300 for the extended nursing time and all the wasted equipment used for all the attempted draws before we got it going. That $300 was not for any lab work, but just for the nurse and the equipment used.

At 6 years out I am still NED and I still have never had trastuzumab, but that in itself is one reason why I've kept it. (Brains over beauty.) But at this point I am likely to have it removed at my next visit with my surgeon.

AlaskaAngel

Stage 1, T1c, ER+, PR+, HER2+++

Chelee · 09-17-2008, 12:58 PM

Caroline, When I finished my last herceptin infusion my onc, surgeon and 2nd opinion onc all agreed I should have my port removed. I was surprised since I'm a stage III'er with pos nodes.

One of my main concerns was if it was removed how would I get my lab work since I have no veins left in my only arm they can use. I had the lab guy I know and doctors tell me not to worry about that...they would fine a way and to just have it removed & move on with my life.

So its been out well over a year and I've had no problems with all my labs...and I've had more lab work done then I can count! For me personally I am so glad I had it removed...it feels so nice to have it gone. As to your question to having your port indefinitely I can't answer that but maybe someone here could? I do know of lots of women that have kept their ports in for years with little to no problems. But I also know of several that had serious problems after leaving them in too long. I know for me I got tired of going down to the cancer center just for a flush...it got old after a while. I thought worse case senario if God forbid "it" comes back I would just have another one put in. Best decision I made. Good luck with whatever you decide..all these decisions we have to make aren't always easy.

Chelee

Caroline UK · 09-18-2008, 02:21 PM

Hi, I remember why I loved this site so much! Thanks guys - some different experiences and opinions and all helpful. At the moment I feel as if I have a foot in both camps. I'd like to have it removed, but I've also just had to attend a clinic twice this week because no-one could manage to find a vein in my one good arm. I think also a part of me wants to move on and leave it behind, and another part quite wants to keep it there as a sort of reminder to live my life to the full.

It means a lot to me that you took time to respond.

Warm wishes to all here
Caroline

tricia keegan · 09-18-2008, 08:28 PM

Caroline my veins are awful since chemo, my onc decided to remove the port after herceptin. I;m amazed because some of the techs get a vein straight away while other's struggle?? not sure now if this is me with bad veins or bad techs lol....if you hate it I'd get it out but otherwise why have the hassle??