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Port.... How is it determined WHEN it is to be removed???

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hi All,

I don't really understand "when" you get your port removed. If you get to NED status.... finish chemo.... but remain on Xeloda.... are you suppose to get your port removed then...OR ..do you wait around to see if you have recurrance...OR...being stage IV... do you not EVER get port removed because you are always faced with recurrance.... OR..is there a time limit you wait...say 5 years and then if no recurrance you get port out???? I have seen several of you mention getting your port out after chemo stopped but maybe ya'll were not stage IV???? Is it bad for your body to keep that port in forever?? I am on Xeloda (on 7 off 7) and avastin every 3 weeks. Onc never told me how long this would be my treatment. If you stay in remission.... for a certain length of time... do they stop all drugs???? My Onc made it sound like I would be on this forever... to keep Cancer "away"... so I am guessing if this is the case that I would never get port removed then because it would be needed for Avastin every 3 weeks??? I don't care if I have to keep port in "forever"...if thats what it takes to keep me healthy..... I guess I am just dreaming that one day this will all be over.

Jennie

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I suppose if you REALLY wanted it out you could have them take it out. I do not plan on ever having mine taken out, it doesn't bother me for one, plus I am still using it. I do know that if I took it out and had to go back on chemo I would NOT want to have my veins destroyed by the chemo. But hey, that's me!

I did get my 6 month letter from Codman, the people who make the Hepatic pump that I had installed over 5 years ago. The keep sending me these update cards to see if it's still "in me" and who fills it up. There must be one hell of a deposit on that thing, they are very interested in it! I have news for them, it's going up in smoke with the rest of me!

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I think the people who get their ports out right after chemo are Stage II and III. Stage IV keeps it longer. A neighbor up in mid-Michigan has had hers in several years (endometrial cancer). She just gets it flushed every 6 - 8 weeks, she is elderly so taking it out might do more harm than good with anesthesia. Take care, good to see you posting. I thought maybe you had abandoned us like some others but more than likely you are still celebrating NED. Tina

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

My original one had to be removed due to the catheter shearing off and landing in my heart. But when I had my second recurrence, they placed the current one on the other side of my chest and it has remained. I don't believe it will be coming out. I don't have any problems with it and always have my blood drawn through it so even when I'm not in treatment I have it accessed enough to keep it flushed!
mary

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

My colon doc and I will make a decision next month if it comes out.

My primary country doc said “hell, we can always put one back in if you need it.” He also said the norm is 18 months from clear scans. They are not a problem to keep. It is just every time it's "flush me baby time" it mentally takes me back to the start of this crap. I just want it out.

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi Jennie
I kept my port about 4 1/2 years. Stage 4. I wanted it out earlier, but my surgeon talked me out of it, he said he knows it's just superstitious, but he's had so many patients that have a re occurrence right after removal. I do know that they have to be flushed every 4-6 weeks. The main risk with a port is developing blood clots, that is why it is important to flush regular, and to keep it open. Mine always did stay tender, and hurt every time flushed, I was ready to get it out. I have a friend that has fought cancer for over 25 years all over her body, she has had ports inserted 4 different times, and removed after her chemo. If you are still in treatment I would keep the port, and wait some length of time after treatment and clean checkups before removal. Mine quit giving blood very early on, but worked fine for chemo. My veins would never have held up for chemo, they are poor and blow easily. Best wishes for you.
Pam

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

I had mine out immediately after chemo was done (within three weeks). No pump, no port, now if I can just get my blood numbers good enough for a CT scan I will be a happy pup. Then schedule my take-down.

Because it is a procedure and they always have risks, if you MIGHT need it, it is a good idea to keep it in. My diagnosis was stage three and other than the whole cancer thing in pretty good health. Psychologically it felt good to have it gone, like that last day I had the pump disconnected. Since there was/is a low probability I will need it any time soon, it was worth it for me to have it removed.

It sounds like for you it might make life easier to leave it in. Much better than getting the constant needle sticks causing your veins to retreat farther and farther into your body and making treatment just that much more non-enjoyable. As long as the port itself is not causing issues...

unicornio's picture
unicornio
Posts: 1
Joined: Nov 2017

I am still evaluating wether to remove port or not... I was a stage 2 and my oncologyst here says they always remove it after a year! I feel it is too long and as you mentioned, psychologically is keeping the fear of recurrence.

thank you

 

TerryGibbons's picture
TerryGibbons
Posts: 13
Joined: Mar 2018

I had mine out 2 weeks ago , if you dont get it removed i was told you must get it flushed monthly, or a max of 6 weeks. 

I had 6 months of Folfox 5 eg. 12 cycles. Now cea reading of 1.8. I hope to have my Ostomy bag off within 6 weeks. 

Hope all goes well for you. Cancer sucks alright. Terry South of Auckland NZ

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

The call for removal comes from your oncologist - you can't just call up a surgeon and tell 'em to pull it out. Surgeon's office needs a referral or authorization from your oncologist before a surgery can be scheduled.

When I had my first port, the nurse told me 4-years after treatment stopped was the normal protocol. I had trouble with my first one, don't think it was installed correctly. I flushed it regularly. I discovered during my LAR that we could not get a blood draw from the port, so it had begun to clot. I was tender in that area and began to worry about a stroke. We had it removed several months after chemo stopped.

The 2nd one was put in well. I had no problems with it, flushed it every 30-days. This past year after the DaVinci robot surgery on my lung, my out of pocket deductibles were paid, so in essence, I could get a port removal surgery free. I only had 4-6 weeks left in the year after the mid-October surgery, so I asked my current onc if since I was currently NED, could he authorize the removal - and he said yes. I took a chance here but by waiting, I would run up a $6000 bill where I otherwise was getting it paid for since I met all of my criteria for my insurance...I took the gamble. Let's hope it pays off - if not, I'll get the same surgeon to put me another back in when and if it's needed.

And like most people, I was glad to have it removed. It's a constant reminder of what you have gone through - there's nothing like rubbing your hand over that area and not feeling that KNOT anymore. Makes you feel a little more human when you can get it out of you. But, it is a blessing when getting treatment and much easier to deal with than going through the veins...I did one round of Oxy in my hand before Port #2 was installed and my arm went limp from my hand clean up to my elbow along with a host of other issues - I had only been on 5fu pump 24/7 the first time, so I had no idea what Oxy would do and of course my Onc at that time, did not clue me in...we had a long talk after that, LOL :)

After the 2nd port removal, there was alot of swelling and tenderness and honestly it felt like the port was still in me, the lump was so big. After a couple of months now, it has subsided and the swelling went down...still some scar tissue in there at the site. Both ports went on the same side of my chest.

Like everything with Cancer, there is no Right or Wrong answer here - just what you and your doctors decide is the best approach for each individual case.

Oh...and I am/was/always will be....Stage IV.

See ya' Jennie :)

-Tex

Trubrit's picture
Trubrit
Posts: 4845
Joined: Jan 2013

Nana & Craig - remembererd here.

Tru

Jaylo969
Posts: 827
Joined: Jan 2010

I am stage 2 and after my 5th Folfox treatment my onc said no more oxi for me because of intense neuropathy in hands & feet/legs. She has put me on Xeloda and made arrangements for my port to be removed this Friday.

I'm glad you asked this question because I was wondering the same thing. Why was she so quick to order the port removed? Does she think I'll never need it again? If I DO need it again then another surgery to have one put in.....just some questions I had in my mind.Some of the replies kind of cleared up a few of my questions and yours too, I suppose? I'll be glad to have it removed because some of the stitches haven't dissolved yet and they burn & sting all of the time.

Best wishes to you.
-Pat

eric38's picture
eric38
Posts: 588
Joined: May 2009

Typical Jen - You are ready to be done with this and have that sucker ripped out right now.
Since the doctor is not going to do it any time soon you could try lancing it with a short string, tieing the other end to a door nob and slamming the door like you would to pull a stubborn tooth. Just kidding.

Kids - Do not try this at home.

Eric

JR's picture
JR
Posts: 140
Joined: May 2009

My first onc told me they last around 5 years, or in my case forever. What a jerk. I'm glad I kicked him to the curb.

CANCER BLOWS !!!

John

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I had mine taken out 3 months after chemo, but I was NED. It really bothered me and it caused me to have a pain in my neck all the time. I am stage 4. ONC had it taken out no other questions asked. Of course, you have to have good insurance or you pay out of pockets to get it put back in, should you need it again. I WILL NOT NEED IT AGAIN! Well, I hope not :-)

Trubrit's picture
Trubrit
Posts: 4845
Joined: Jan 2013

Nana was a rock for all of us, for many years. 

R.I.P. lady. I'll see you on the flip side. 

Tru  -   Old posts have their benefits, but they bring up allot of emotins for those of us who remember our lost freinds. 

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

And he's still in practice? Did he think he was being funny?!!!
mary

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Thank you for all your comments on this subject. I feel much more informed. Special thanks to Eric as I now know how to remove this dang port.."free of charge" LOL

Have a great day!

Jennie

tiny one
Posts: 467
Joined: Jan 2009

I had mine taken out as soon as I could. It came out 3 months after my last chemo treatment and it was removed the day my surgeon checked my sutures from my ileostomy reversal. It was done with a local in his office. I wish now that I had taken a picture of my port.

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

I had my port removed when I was 6 months NED.
four months later I had to go back on chemo,
and a new port had to be inplanted in my chest.
I am unhappy with placement of 2nd port ,and wish I
had left the 1st one in.
apparently there are two different kinds of ports,
a friend of mine told me they removed hers in the office under local
and it only took a short time.
I asked my doctor if mine could be removed like that and he said no,
it had to be done in the operating room.he said my friend did not have the same kind of port as mine,but did not explain difference.
so maybe if yours can be removed in office,go for it.

Anonymous user (not verified)

This comment has been removed by the Moderator

optimist777
Posts: 38
Joined: Feb 2018

Just my two cents but you just need to consider a few things:

1.  How likely does your oncologist think that you will have a re-occurance?

2.  Does the port function well?

3.  Is the port comfortable, or does it slightly hurt when you exercise or move?

4.  Is the port unsightly, or can you barely see it?

Personally, I think if your oncologist thinks you won't have a re-occurance, and the port works well, and is not confortable or unsightly-- I would still leave it in for 3 years after your last treatment before getting it out.  It would be a hassle to have to have one re-inserted, and may not work as well, or feel, or look as good at the first one. 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Mine is coming out in a few days with the reversal. Oncologist just provided permission this morning (I asked several days ago). It can be a tough decision and I'd guess that oncologists vary on the subject.

TerryGibbons's picture
TerryGibbons
Posts: 13
Joined: Mar 2018

I had mine out 2 weeks ago , if you dont get it removed i was told you must get it flushed monthly, or a max of 6 weeks. 

I had 6 months of Folfox 5 eg. 12 cycles. Now cea reading of 1.8. I hope to have my Ostomy bag off within 6 weeks. 

Hope all goes well for you. Cancer sucks alright. Terry South of Auckland NZ

 
Trubrit's picture
Trubrit
Posts: 4845
Joined: Jan 2013

and friends now gone.

Still, we live and learn from them, and everyone.

Tru

TerryGibbons's picture
TerryGibbons
Posts: 13
Joined: Mar 2018

I had my one out about 3 weeks after chemo finished. The hospital did not want it left in due to possible infection. Ct scan next week then look forward to Ostomy reversal. Had bag for 9 months and am sick to death of it.  CEA now 1.5 fingers crossed. 

Annabelle41415's picture
Annabelle41415
Posts: 6209
Joined: Feb 2009

So many good people on this post gone too soon.  This post is so old but the same question comes up over and over again.  I'm glad CSN didn't delete Idlehunters. She had a lot of information to share.

Kim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I wanted it out because it limited me from playing tennis and lifting weights, two things that I consider part of my life. I have not returned to doing those things yet as my abs are still healing but I'm hoping to return to some of those things in three weeks. I will start out very slowly.

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