How long do you keep port in

[Hapa]

My husband has had 4 chemo appointments. He still has a way to go including radiation. While reading other post I wondered how do you decide when to have port removed? My dh has had his port for about 1 1/2 months. It's still very sensitive-especially when seat belt hits it. He assumed that it would be right after treatment was complete. Just doesn't seem to be that simple......



Dh stage 3 rc

[dianetavegia]

My port was removed a few weeks after my final chemo. I had failed to call the surgeon for an appointment. He did it in office and it was NOT fun.

I did have a recurrence 3 years later but the spot on my liver was surgically removed while still very tiny. I did NOT need follow up chemo.

[Rob in PA]

I've had my port in five years and two months. Twice I thought about getting it out but had lung thingies going on that we were keeping an eye on and they advised me to keep it in. Turns out they were right as the thingies were cancer and I needed the port. Now I am NED since last July and am starting to think about getting it out. My next scan is in April and I'll probably make decision then if things go well.

My port doesn't bother me much anymore. Biggest problem I have is remembering to get it flushed!

Rob

[Staci's team]

Don't want to be a Debbie Downer here, but I want to make sure you're as informed as possible so as to properly set expectations -- and I'm hoping that it's just me misinterpreting both his current situation and the way you wrote the sentence below.

He still has a way to go including radiation.

I can only tell you the experience of my Stage IIIb rectal cancer survivor wife, so your husband's may or may not be different. Prior to surgery, she was on Xeloda as she was having radiation treaments....but it sounds like your husband may be on the IV of 5FU as the sensitizer for the radiation? If that's the case, I certainly understand why he's got the port now. That said, chemo will not likely be done once he's done with his pre-surgery chemoradiation. Staci had 8 cycles of chemo after her surgery, and that's actually when she got the port since the oxaliplatin part of the FOLFOX chemo cocktail can be hard on the veins for some. She did not get hers out until 6 months after she was done with chemo, and that was a lot sooner than her oncologist wanted it to come out, but he relented after a clean scan. All told, it was about a year that she had it in.

Hope this helps....and that I don't make anyone upset by relaying the experience with which I'm the most familiar.


Chris

[dianetavegia]

Actually, Hapa, my onc was the one who told me to have mine removed immediately. I was Stage IIIB Colon (not rectal) and completed 12 tx of FOLFOX. I asked for a follow up visit 2 weeks after my final chemo so we could check my platelets before I started taking aspirin to prevent recurrence. My onc asked why I still had my port! I told him I'd failed to call the surgeon early enough to get squeezed in but that it was coming out a few days later. I held off on the aspirin until that was done.

Removal was not fun! I had local anesthesia in office and some scar tissue had built up. There was quite a bit of yanking, pulling and cutting before they got it out. I had to change bandages several times that afternoon and was sore for days. There's a divot in my chest where the port was. Insertion was a breeze with no real pain afterwards so I was quite surprised taking it out was just the opposite.

I'm so glad I had mine removed! I didn't have to THINK about cancer and go for flushings. One less thing to worry about AND several studies have shown that follow up chemo after lung / liver resections for a first, solitary met has not shown to increase cure/ survival rates so I've not needed that stupid port for all this time.

No caregiver or family/ friend can understand what it feels like to have that constant reminder of cancer sticking out of your chest ..... If your husband's onc is fine with it, get it out as quickly as possible. If he ever needs another one, it's a quick procedure.

Now this is all just MY opinion and my experience so take it or leave it but try to understand how your husband feels about the port. I remember getting some tax papers together the following year and I came across the paperwork they have given me with info on the port. It made my heart sink and my tummy turn just to see the purple picture. Garbage! Quickly as possible! Right in the can!

[Hapa]

Staci's team-

My DH story is slightly different. He went in for takedown after several years of having "temp illeostomy". The surgeon discovered the tumor during that surgery. It didn't show up in ct scans & not during colonoscopy - SURPRISE! Therefore, he didnt have radiation prior to surgery. His treatment plan is 1/2 chemo now,then chemoradiation (r-1 Margin) then remainder of chemo. I do think that he should probably wait for a scan or two before removing his port. But, he is his own person & I know he would think of that as "waiting for the other shoe to drop". We'll definetly speak with oncologist towards the end of Chemo.

Yikes Diane- Your port removal sounds horrible! I'll be sure he goes to Surgery Center to remove. Altho, he is rather tuff- he watches his colonoscopies. Not me put me out- which reminds me I have to get colonoscopy soon. Caregivers forget about themselves.

Because we didn't know he had a tumor- we didn't get a pre surg CEA. I guess we'll have to use the CEA that was before his first chemo (1.7). I had to insist on that test. The oncologist didn't seem to think it was important. Funny, I don't care for oncologist but he really likes him. Glad I come here for alternate info!

Thanks for your input

dh stage 3 rc

[sbrainbolt]

I am with Diane! Mine was outta there asap after final chemo! I had to wait 6 weeks because I was taking a 2 week "NO MO CHEMO" celebration trip to Hawaii and didn't want to risk anything getting infected etc.

I figure if anything crops up down the line I can always get another one. I don't miss it one bit!

Best of luck!
Susan

[Val*pal]

It looks like everyone's case is a little different concerning how long a port is kept in. My husband's has been in since July 2011 and it doesn't bother him at all. I'm glad it's there since it makes those 90 day blood draws easier. Since his latest scan showed a recurrence of cancer, he will restart chemotherapy a week from today, so I'm glad he already has the port in place. It's one less medical task. I remember sitting and waiting when his port was originally placed and it made me feel better since he had suffered complications from his colon resection and the port made things a lot easier. Personally (and obviously I'm not the one with the port), I think it's a cool thing.

[CRguy]

..... I do think that he should probably wait for a scan or two before removing his port.

AND he would be wise to listen to you, and hopefully his Doc wants to keep it for a while also ????

I just had mine removed yesterday after 2½ years and have a topic Here with the details. My Onc wanted to keep it in for 1 year after last chemo. Why take it out if there are situations which mean you might have to get another one in again ? ....makes no sense to me. I can understand IF the port is causing problems, you may want it out. Mine wasn't so I kept it longer.

I know there are bad stories about having port problems, and those are often the ones we read about here. My experience was excellent. I had a vascular surgeon install mine, instead of an interventional radiologist or general surgeon, kept it for the 2½ years with only monthly flushes and the same surgeon took it out. He told me these ports (Bard Power Port with Groshong catheter) are the ones used in children with cystic fibrosis who need ongoing lifelong infusions, and they last for years. I had mine in my right shoulder, since I am usually the driver (we drive on the right here) so never any seatbelt problems. No pain, no clots...NO problems.

When I had my first resection I can see how it may be different wanting the port out sooner. I had mine for a recurrence and I was not going to take any chances having it out and then getting another one. It makes complete sense to wait for a clear scan or two before making the decision...but as you've said he is his own person and it is his body !

Best wishes
CRguy

[Ashlee H.]

Six months after my liver resection and everything was looking good, ONC suggested I have the port removed. I came on here asking for advice. Many told me they waited until the third clean scan to have it removed. Unfortunately for me....my 3rd scan showed a reoccurrence. I doubt I will ever have it removed unless I'm NED for a few years. I like that my veins don't have to be poked for tests. My Cancer Center is only 10 mins. away, so getting it flushed once in awhile isn't a big deal.
I would love to be one of the lucky ones that had the option of having it removed. But, as long as it is working, it's staying.

[CRguy]

So true Ashlee...... I am still second guessing myself here because it caused no problems. Dumb I know...but still, cancer never plays by the rules

sending you Posi+++vibes my friend
ONWARD !
CRguy

[justin case]

I had 3 chemo treatments,( Folfox) 6 weeks of chemo/ radiation, surgery, then 12 more treatments of 5FU. I had my port for 21 treatments, and my veins still got shot. Don't be in a hurry to get rid of the port. Mine was taken out, after there was no sign of PET/CT scan uptake, or nothing to be seen. Use it as long as it is benificial, and wait for your oncologist, to make that decision. JMHO
Regards,
Michael

[gracelinedesign]

Had it placed in June of 2012... just finished second round of chemo (mop up) and cancer free. My oncologist just informed me that he wants me to keep in for another year. I had a real tough time in the beginning always feeling it. I hated it. Seat belts were a pain... but now I don't even know it's there. It does get better.

[Kekeg]

I had my port over a year, my oncologist would have preferred leaving it fo 6 months after last scheduled chemo. I found synthetic sheepskin seatbelt covers helped - a bout $5 at WalMart. Also kept my little "cough" pillow from hospital in car if needed for padding.

[Deb in Texas]

My plan is to get port removed when I get my reversal. My surgeon put it in and I'm glad to be "under" when it comes out. Hope my oncologist agrees. I don't regret having it put in because with a little lidocaine I don't feel the needle going in at all and I hated having blood taken from my arm.