Need some advice....port removal

Mary1864

Ok...so in a nutshell...I just finished my 12 rounds of folfox and 6 weeks of chemo/radiation after surgery in spring to remove tumor (staged at 3a - one lymph node, scans clear).  I was told by my oncologist that I would get a cea test, 3 months follow up.  I had a cea of 7.5 in the beginning of all of this and a 6 month follow up test of 3.0.  (I am a smoker....with intentions of quitting....really going to try to kick it this time).

So being officially done treatment for the time being and God willing...my question is whether I should remove my port.  I am tall and skinny and it pops out of my chest, gets banged all the time and is not comfortable.  My doc tecommended leaving it but told me that it was my decision. 

If there is found to be more cancer, is it likely that I would be back on home infusion treatments where I would need the port?  I wouldnt be back on folfox, right?  I had the port put in and the surgeon collapsed my lung, he told me it was because I am skinny.  I dont want to go thru that again.  

Any insight?  

Mary

Trubrit

It all depends

Allot of Oncologist and patients like to leave them in, six months a year, two years. My Oncologist wanted to get mine out just as soon as I had my first clear scan, which is what I did. 

I did have a reuccurance, but just had surgery and no more chemo, so, so far I am definitely not regretting the decision. 

Of course, you have to get your port maintained once evey four weeks, another reason to get it out. 

It really is a personal decision. 

I am sorry to hear that a fairly easy procedure, ended up giving you so many problems. Ouch! 

Good luck in the decision you make. 

Sue - Trubrit

Helen321

I left mine in for 18 months.

I left mine in for 18 months.  Listen to your doctor.  It sticks out whether you are skinny or fat, it just sticks out.  Bumping hurts but getting it in and out is a real pain and they can't put it back in the same spot according to my understanding.  Your doctor is a good judge of time removal.  Mine was right on point.

Helen321

Trubrit said:

It all depends

Allot of Oncologist and patients like to leave them in, six months a year, two years. My Oncologist wanted to get mine out just as soon as I had my first clear scan, which is what I did. 

I did have a reuccurance, but just had surgery and no more chemo, so, so far I am definitely not regretting the decision. 

Of course, you have to get your port maintained once evey four weeks, another reason to get it out. 

It really is a personal decision. 

I am sorry to hear that a fairly easy procedure, ended up giving you so many problems. Ouch! 

Good luck in the decision you make. 

Sue - Trubrit

I only maintained mine once

I only maintained mine once every 8 weeks and it was okay according to my doctor and it was easy since you have to do follow up blood work about that often anyway. You just tell them you will also be getting your port flushed along with your bloodwork and they arrange to do it same day.

beaumontdave

Left mine in for six years,

Left mine in for six years, did folfox once, didn't flush it much after chemo. They took it out at the last liver resection 18 months ago.
Will you ever need it again, will they do folfox ever again, big maybe, but flushing every month is a pain as well, so it's your call.

zx10guy

I had mine out about a month

I had mine out about a month after I finished chemo.  I asked my oncologist when I could get this blasted thing out of my chest.  He said to wait at least 2 to 3 weeks after I complete my last chemo session.  When I completed #12, I contacted my CRC surgeon to ask when I could get scheduled to get the port out.  He was shocked that my oncologist gave the OK to have the port out so soon.  He asked me to call my oncologist to double check.  I got the ok again and then go the appointment scheduled to get it out.

This July will be 3 years since I've had it out.  I don't regret it at all.  The thing irritated me both physically and mentally.  It caused some pain and discomfort for me plus I couldn't stand seeing the bump under my clothes or seeing myself in the mirror with it.  In regards to the fear of recurrence and the need to have it as a just in case, if I have a recurrence, I have bigger issues than to worry about having the port put back in.  Also, I developed a high sensitivity to the saline injections to flush the port.  Near the end of treatment, every time I got a saline flush, I had a strong urge to vomit.  It took a year to two years for me to get over wanting to hurl everytime I got a saline flush when an IV was started for my CT with contrast scans.

Phil64

Helen321 said:

I only maintained mine once

I only maintained mine once every 8 weeks and it was okay according to my doctor and it was easy since you have to do follow up blood work about that often anyway. You just tell them you will also be getting your port flushed along with your bloodwork and they arrange to do it same day.

Ditto what Helen said

I have gone 8 weeks without maintenance and it was fine.  Also, I've had my port in for four years now. I wonder how long they last. :-)

annalexandria

I got my port out right after the end of my first chemo

and ended up having it put back a few months later for another go round.  In my case, I did do two different regimens but both involved the take home pump and the port seems to work best with that, so back in it went.  Not a big deal, but I did leave it in for about 6 months after the 2nd time (and didn't need it again, go figure).

I think it's like your doc said, totally up to you.  If it bothers you, I'd probably get it out sooner rather than later and hope for the best!

Good luck!  AA

MAliceR

I waited a year

Port removal is a personal thing. My first run with chemo was without a port. After 8 months the veins in my arms were shot. When I had a recurrence my oncologist didn't give me an option because I would be wearing a pump for 3 days every other week. My port was not uncomfortable but it reminded me of cancer every time I bumped it or saw it in the mirror. That said I was so afraid of a recurrence and needing it again I was afraid to have it removed. A year after completing chemo. Well actually 13 months after, I went for it. I needed to do it for me. I am glad I did. I have had 7 months now port free. It has helped me refocus on life. Do what works for you. I believe you will know when you are ready to have it removed and will be confortable with your decision. 

NewHere

Phil64 said:

Ditto what Helen said

I have gone 8 weeks without maintenance and it was fine.  Also, I've had my port in for four years now. I wonder how long they last. :-)

Double Ditto

I was told 6-8 weeks (Helen and I are both at MSK if I recall correctly.  Well I know I am, ain't that much chemo brain happening )  So when I get scans or bloodwork it works out well.  I did have one time to get it flushed because of the timing.  On the ports, they come in different "flavors."  I think I heard 5-10 years depending on the model.  Mine is a 5 year one I think.  

PhillieG

My Opinion?

Keep it in.

danker

PhillieG said:

My Opinion?

Keep it in.

my Opinion?

Get it out as soon as the drs will let you!