NEAD 4 years: Keep or remove the port?

MommyErin

I’m just over 4 years out from my de novo MBC diagnosis and will be 4 years NEAD in August. I’ll hopefully be making the switch from herceptin/perjeta IV to shot, making my port unnecessary except for labs. I’m not planning to remove the port immediately after switching to the shot in case I decide to switch back to the infusion for some reason, but just curious what others have decided regarding their ports when they were no longer getting infusions. Will I regret switching to arm pokes for labs? (I do have stage 1 lymphedema). I’ve loved the port for treatment, but it’s very visually obvious, so my default is high-neck tops to cover it and I would love to not have that daily visual reminder. But, that’s mostly vanity. Would appreciate different perspectives on why I should remove or keep it if it’s no longer needed for treatment. Thanks

Spookiesmom

I’ve had my port 8 years. I want it in. Great for labs, LE both arms. Currently on ibrance letrozole, never know if I’d have to do IV chemo again. Was also useful for a surgery.

Anonymous

Ive never had a port and I still (unfortunately) have to do Perjeta by infusion, It's fine though, still able to find veins and mine are small so not the easiest to find a good one. But we manage

However, I do not have lymphedema

And hooray for 4 years NEAD! That is wonderful

nowaldron

Congrats on four years NED. I just passed the fiver year mark being "stable," and received H/P every three weeks. Even if I were getting the injection, I would keep my port. To be honest, the little "bump" associated with the port doesn't bother me one whit.

exbrnxgrl

I’ve had my port for almost 10 years and have no intention of removing it. I an generally not a superstitious person but I got the strange idea that if I remove it I will have progression. Totally irrational and not based in reality, but it’s ok as I’m usually hyper rational. My port is not visible so vanity isn’t an issue. I use it for blood work, PET scans, even for IV’s for surgery. I have never had IV chemo... long story. Bottom line is that there is a high likelihood I will need it for chemo at some point. Since it doesn’t bother and I use it for other venous access, I’m keeping it. Everyone has different feelings about this so in the end you need to do what’s best for you.

Simone80

Congrats on the 4 and 5 years! That is great news.