When to get Port removed?

[Bev G]

Well Holly, a lot of things go into the decision of port removal. First though, about the accessing pain, didn't your oncologist give you Emla (lidocaine) cream? Put some on a couple hours before the stick and you don't feel a thing. I LOVE it. Hell, I use it on my arm every time I have to have an IV stick when the port won't/can't be used. It's fantastic .

The other things that need to be considered here are what stage you are, your likelihood for recurrence, and personal considerations. For me, I'm a stage IV patient. Who knows if mine will ever come out. If it does, it will be one of the happiest days of my life merely for what that will represent for me, not because I hate my port. I love the thing. It doesn't bother me anymore, and since my onc is happy with flushing it every 2 months, it's not a big deal to take care of it at all. I forget it's there all the time. Furthermore, for me, the post-op pain from the port installation was SIGNIFICANT, and I don't want to go through that again. Finally, I'm as superstitious as a hockey goalie sometimes. I want to keep the port because I know that if I have it taken out, the cancer will come back just to spite me. Intellectually I know that's stupid, but I feel this way, so I'm going to be holding on to my port as strongly as I can.

Another stage IV checking in here: DITTO, EXACTLY, ON EACH POINT. I HOPE I'LL KEEP MINE FOREVER!

And, someone just said, I'm sorry I can't remember who, about finishing chemo 6 months ago, still having the port but not getting it flushed; it's not just about keeping it working, there are blood clot issues, too. Please get yours flushed soon.

Bev

[Bill5107]

When my ONC told me I could have my port out, I went here to ask for everyone's opinion. Most of the advice was to wait until you get 3 clear scans. At 9 months, I got a recurrence, so happy I didn't have it removed. . .

In my case, my Onc scheduled me to remove mine early after FOLFOX was done,,,before all results were in actually.

I didn't see why I should argue, and perhaps he thought I was at risk with my activities of getting hurt from hitting it or something...don't know, didn't ask, and still don't care to be honest.

I won't say to follow my example but I trusted my Onc and I really appreciated _not_ having it in over the summer...I have one again now due to recurrence, but looking back, I'm pretty sure that I would not have changed a thing. I had my 6 "clear" months and now on to my next challenge.

not for everyone, so you will have to find what works for you. My second port placement was a breeze too. (perhaps all the pain meds I was on anyway or perhaps it really did go in easier..

[CRguy]

Intellectually I know that's stupid, but I feel this way, so I'm going to be holding on to my port as strongly as I can.

Hey Holly,

While I am Stage III with recurrence, or Stage 3.5 ( I made that Stage up ) and have never had or needed EMLA for access, and NEVER had any problems with the port......
I pretty much repeat everything Fletch says, except trauma with placement ( my vascular surgeon was an artist and I had very little discomfort right from the start.) I flush every month, Onc says "Ok out anytime", I have been a hockey player (not goalie..they truly are different ) and not superstitious ( knock on wood ) ..BUT : the port is not bothering me, I'm not bothering it, never had a problem, I like my nurses, Vascular surgeon who put it in puts these in pediatric cystic fibrosis patients and they last for years...so I am thinking what is the downside ???????

I truly understand the notion that getting the port out is a "closure" for some folks to leave the CRC behind.
For me not really an issue, so in it will stay until I feel I want to move on. For you, I would think leaving it in until the June scans would be a reasonable minimum.

Cheers and best wishes for making the best choice for YOU !
CRguy

[sweeny]

Hi Bev, I'm the foolish one that still has my port in. I had no idea it could cause clots though ! Thank you for pointing that out.

[Guinevere]

I figure I'll keep mine in until I at least have it paid for - $12K & no insurance. Since the heartache, my veins have been very hard to access (never been a problem before) so I'm all for keeping it in and getting it flushed from time to time.

[sweeny]

$12,000 ??!% wow. that's expensive. In the UK, mine was less than £1,000. I hope they didn't fit me with a dud one !

[Guinevere]

I guess it was because I'm also a heart patient and had to have anesthesia and the whole nine yards for the 15 minute procedure.

[HildaC]

I've also been considering having my port removed, since I'm technically through with intravenous chemo. However, I'll be having an ileostomy reversal in the spring, so I figured, I'd keep the port in until after that surgery. After my APR in August I developed complications that landed me back in the hospital, and my port really came in handy when they needed more than one IV and just couldn't get an IV started.

Good luck with you decision!

[Jimswife]

What's the diff between the ports and the iv ? Nobody even suggested to my husband about port ? He just goes in hospital every 14 days for 48 hrs and has it pumped through his hand ? I think I did mention something about a port and the nurse said they can harbour infections etc ???

[Bev G]

Hi again:

Obviously, I posted an emphatic agreement with Fletch's post and I thought I should come back and say why: When I had my port put in, they would not give me any anesthesia because my blood pressure was too low. It was put in fairly shortly after my colon resection and I was still a bit edgy about the whole cancer thing. They had to put the drape all the way over my head and I became very, very claustrophobic and had a bit of a panic attach. An angel nurse finally gave me a 2" x 2" hole to look through which helped me get it back together. I didn't like the no anesthesia part though..the local anesthetic was "OK" curbing the pain, but it was not an experience I want to repeat. The biggest reason I don't want it out though, is that I literally have NO veins to access. It is a major problem whenever I need venous access for anything (ie PET/CT--my place won't use my port ) they sometimes have to go right between my knuckles which I find very yucky and almost unbearable. So, I hope this explains why I am now in love with my port. I think it's really reasonable when lots of people get their port out, but personally I would wait (if I were going to do it) until I'd had clean scans for a year).

==Bev

[Bussman]

I've been mulling this over a lot lately. I'm 5 months post-chem and just had a clear scan. My onc says go ahead and take it out now. Chemo nurses I polled generally said take it out sooner than later.

I've decided to get it removed after my 1 year follow-up scope in January. Why? Aside from the basic benefit of having it out, I can avoid a bunch of visits to the cancer center for flushes, and if I get a recurrance and need to go back on chemo, having to have a new port placed is going to be among least of my worries!

So I'd be inclined to have it sooner rather than later, and not sure I would wait for the June scope, although that would certainly be reasonable.

Bussman

[Gloria]

I'm surprised you were awake to have it put in, I was knocked out
I finished my chemo in January and also in June, I just got my port out a week ago and was also knocked out then too, even though it only took about 10 mins. My Onc had wanted to leave if for a few months and then recently gave me the okay to get it out if I wanted to. I'm glad I did even though I kept thinking what if..... but we can't live on what if's I also used a numbing cream right before I went to get my infusion or to get it flushed. I didn't like getting my port accessed and I never would let them touch it without the numbing cream.
(I lost my job and was concerned that when I find a new job they would not appreciate me having to take off early or coming in late to get it flushed)
Good Luck

[jens22]

Hi Holly,
I'm an MSK patient and mine was removed 1 year after the completion of my last chemo. That was always the plan. I ALWAYS used Emla Cream 1 hour before anyone accessed myport because I am a big baby. The first day that I was dissconnected it hurt like a bee sting for about 1.2 hour. My port was put in with local with 2 doses of ativan and removed with just local. I feels funny being out now.

[sg101]

The plan was to leave mine in for a year - I was NOT happy with that as I had constant neck discomfort the whole time the thing was in. Three months after I finished chemo, I wound up with yeast in my blood (long story) and the port HAD to come out emergently. Although I wasn't happy with the reason, I was thrilled once it was out. I did have a bit of anxiet about not having it when it came time for a follow up CT scan, but as others have said - you can always have a new one ut in if necessary.

[Mastan]

Holly,

I suggest you take the following into consideration. What does your medical oncologist recommend for the removal? This relates of course to your staging. Secondly, think about the discomfort you incurred with the port installation. What kind of state woild you find yourself in if it was removed and have to be inserted at a later date? I personally did not have any problems with my port goin in or being removed but i waited until my second clear PET scan before it was removed because i did not want to have it removed right after chemo and then turn around and have to have another inserted. A little patience is your best ally at this point. Get a couple of clean scans under your belt and you will feel more confident about the decision to have the port removed. Best of luck.

Mark