Should I have my port removed, or keep it?

Caroline UK · 09-16-2008, 07:33 AM

Hi everyone, I've been away for a long time - I needed to move away from this lovely site only because I wanted to turn away from all things bc for a while. I truly hope my old, and new, friends are doing well.

I have a question regarding my portacath. It's still in place, although I finished my year of Herceptin ten months ago. A month later I fell in the supermarket and broke both arms, so I've been healing from that, and not felt like addressing my portacath removal question.

Anyway, my veins are terrible, and when I need blood tests it's very hard for the them to find a willing vein. My question is, can the portacath stay there indefinitely? Have people here chosen to keep theirs? If so, can you flush it yourself or do you have to go to hospital to have it done? How often?

Hmm, that was more questions than I'd planned.

Hope you can help.
Best wishes and good health to you all.

Caroline

sassy · 09-16-2008, 06:52 PM

Caroline,

I kept my port for about 3 1/2 years. Just had it removed last month. We were still doing blood draws every 3 months, so we used it for that and flushed it then. Never had ant problems.

We will be moving to every 6 month blood draws soon, and I only have one infusion per year now (Zometa), so I decided to go ahead and take out the port, rather than have to go in just to have it flushed.

If you have poor veins, you might consider keeping it longer to use for your draws etc.

I would doubt that you would be able to flush the port yourself---just guessing.

Best to you,

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??

BonnieR · 09-18-2008, 09:27 PM

Caroline, you DO have a foot in both camps it sounds like! You could make the argument either way. What advice are you getting from your doctors and the technicians who draw your blood? I had my port removed last week after my year of Herceptin. It was in a terrible location so that helped decide. I don't have wonderful veins and had lymph nodes removed on both sides, but still, those things will never change and I figured I can't keep a port forever.
Also, I started a thread asking the same question last month or so. Have a look around the board to find it. I received alot of thoughtful replies..
It is a big decision so I suggest you pray on it and I bet you will receive clarity.
Keep the faith!

naturaleigh · 09-19-2008, 08:21 AM

I had my port removed during my reconstruction surgery. One reason was to move on and the other was because with the port I had, blood could not be drawn from it, they had to take it through the veins anyway. The port could not even be used during surgery which I wanted to save my veins. As I was compeleting Herceptin, a new and improved port came out that allow blood draws threw it.

The plan is not to get a reaccurance, but if I do, I will get the latest new and approved port available at the time.

Best of Luck to you, and congratulations on finishing your treatments!!