Port - take it out or not?

Ribbons

My last chemo was 6 weeks ago, I want this port out. My Dr said she recommends leaving it for a while but I could have it out if I want. It bothers me, I’m always bumping it and sometimes it itches. Should I be cautious and live with it? I choose to think I am done with all this and the port is not needed anymore, so I guess it’s my decision but I need a little feedback.

zsazsa1

Hope for the best, plan for the worst.

If you can stand it, I'd leave it in for two years.  Apparently, the risk of recurrence goes down significantly after that.  But I also understand one's desire to think, "I'm cured.  I did all this chemo and radiation so that I'd BE cured, and I'm cured."  And the port bothers you.

You can always have another put in if, God forbid, you need it.

Jairoldi

I get mine out mid April

My doc recommended 2 years from surgery. For me that is May 1, 2019. As Zsa Zsa said the greatest chance of recurrence is in the first 2 years. I will be happy to have it removed. Sometimes it bothers me and I don't like having to go to the hospital to have it flushed between check ups. 

barnyardgal

I'm 10 months out from my

I'm 10 months out from my last chemo and the doctor said I could take it out now if I wanted. I'm thinking about doing it this summer, but I might wait til I hit the 2 year mark as a celebration.

MAbound

Security Blanket

I felt like I was going to jinx things if I took out the port. I'd still have it in if I hadn't moved and changed doctors. I had it for a year and a half after chemo. I don't miss it, but it was my security blanket for just in case.

derMaus

I hate mine, too. It pulls

I hate mine, too. It pulls and itches and gives me the creeps. But, even before my recurrences, I'd decided to keep it for the full 2 years as recommended. Now it's been in contiual use (Keytruda every 3 weeks) so flushing isn't an issue, but I still don't like it. I don't blame you for wanting it out but caution you to think hard before pulling the plug... B

Jairoldi

Port removal recovery

On the subject of port removal mine is to be removed on April 18th with local anesthetic. For those that have had their port removed what was the recovery like?  Easy peasy, in and out and back to work that afternoon?  Or ugh, it was sore for a few days.  Just curious.  When I had my port placed I was still recovering from surgery and chemo was the next day so I'm a bit foggy about what it felt like though I do recall the seatbelt did not feel good nor could I pull the lever to the easy chair by myself right away.

 

TeddyandBears_Mom

Jairoldi, My port removal was

Jairoldi, My port removal was easy peasy... Recovery was really nothing. A few stitches removed about a week later or so later.  

I used some numbing cream to help with the numbing shots. It worked well and I had little to no pain just some pressure.

Hope this helps!

Love and hugs,

Cindi

Jairoldi

TeddyandBears_Mom said:

Jairoldi, My port removal was

Jairoldi, My port removal was easy peasy... Recovery was really nothing. A few stitches removed about a week later or so later.  

I used some numbing cream to help with the numbing shots. It worked well and I had little to no pain just some pressure.

Hope this helps!

Love and hugs,

Cindi

Thanks

Thanks Cindi.  That is helpful. I'm so looking forward to not feeling like I have a kink in my neck and looking forward to it not hurting so much when my granchildren accidentally bonk me there.  Amazing how many times getting bonked can happen   Also great idea on the numbing cream.  I still have some so will use it that morning.

 

Tamlen

I was surprised when my med

I was surprised when my med onc offered to have my port taken out when I saw her for a routine visit last month. I only finished chemo in September and always heard about that two-year rule of thumb. My port doesn't give me tons of trouble but burns now and then. I surprised myself by saying, "No, leave it in for now!" I don't want to have to have one put back in later.

It wasn't until I got home that I started reading into her offer. I'm Stage 4B. Was she saying there's nothing more they'll do that would use a port? Yikes. That kept me awake that night. I see my gyn onc next month and you can bet I'll be asking her thoughts about it.

zsazsa1

Well, it's more likely that

Well, it's more likely that you could look at it the other way, maybe she is optimistic that you have been cured, and won't need it again!  But I agree with you, I think you should leave it in.  If you have a recurrence, there is more chemo that you could have, and they would need the port.

Soup52

I still have mine and it’s

I still have mine and it’s been in since feb 2016. My prior doc recomended I keep it for the time being. It really doesn’t bother me and yes gives me some reassurance. I see a new oncologist in a couple weeks and we will see what he says.

Kaleena

6 years

I had mine in for six years.  I was glad to don’t get it out.  It was twisted and sometimes hard to flush

jan9wils

I had my first port for over

I had my first port for over a year after finishing chemo the 1st time. When I came to need chemo again they used it for my first treatment. I "threw" a clot which turned out to be life-threateneing. That port came out and a new one put in on the other side. The surgeon who removed it told me it was full of clots and happens more than you would think. My second port the onc said take it out right after to ward against clots. I found having them taken out easy (and a relief). Putting one in, that was when I was sore. 

Armywife

jan9wils said:

I had my first port for over

I had my first port for over a year after finishing chemo the 1st time. When I came to need chemo again they used it for my first treatment. I "threw" a clot which turned out to be life-threateneing. That port came out and a new one put in on the other side. The surgeon who removed it told me it was full of clots and happens more than you would think. My second port the onc said take it out right after to ward against clots. I found having them taken out easy (and a relief). Putting one in, that was when I was sore. 

Jan

I'm so sorry you had a clot issue  - as if cancer wasn't life-threatening enough!  When you had your regular port flushes in between finishing your first chemo and your second, did you have any trouble?  Like did they always go successfully and did you have any symptoms at all that made you or the techs wonder if you had clots?  My gyn-onc gave me a list of warning signs, and at my physical exams she asks how it is, but your experience sobers me a little - I want to be sure to be vigilant.  I finished chemo in October of '17, and have my port flushed every 5 weeks.  

NJW

Leave in, and about the itching...

Other than twice getting cellulitis around the port (I don't think my body likes it), I am glad I kept mine in. I thought it was for nothing, but here it is almost three years later, and I am being offered high dose Vit C IV, so it will get used again! 

As for the itching.... I took the supplement "Serrapeptase" hoping it might help with the cancer (metastatic endometrial in 3 lobes of my lungs). To my utter surprise, it helped with the pink, itchy scarring of the port!!!  It is so well-healed with barely visible non-raised thin scars. A nurse just exclaimed it was the most well-healed port surgery she'd seen. 

barnyardgal

My doctor recommended getting

My doctor recommended getting the port out, so out it comes tomorrow. I was fortunate not to have any issues with it, except when my grandkids gave me a hug, lol.

Had my one year checkup and cat-125 check and all was well with the cat-125 at 5. I get more nervous with the cat-125 then I do with scans, I don't know why. I'll have my annual PET in October.

 

imnotjenny

I was told by my doctors at a very reputable cancer institute that you cannot keep your port in long-term without chance of infection. I wanted to keep mine, because it hurt so much when they put it in as I'm a thin person, and they said the less body fat that you have the more it could possibly hurt, that I didn't want to go through re-placement if the cancer comes back... to see that some of you have had it in for many years seems worrisome. I'm wondering when the pan from Port removal goes away, because I'm five days after and I still get slight pangs of pain. Thank you for any information!

Mercorby

I had my port in for 6 ½ years. I had a recurrence 6 months after the end of chemo, so the drs insisted that I keep the port. The port was flushed monthly and used regularly for blood draws. Periodically, it would clog up, and then the nurses put whatever unclogs it and it would work again. By about 5 ½ years, that clogging routine would happen nearly every month and suddenly, my jugular vein felt swollen and tender. I kept begging for the damn port to be removed. But the drs were sure that they'd need it again and said that if there was a problem they would see it on the ct scans. Well, they couldn't see anything on the scans because I can't get iodine iv contrast. My face starts to swell, and eventually, I even had difficulty hooking my bra on, blah, blah, blah. To shorten the story, I was eventually hospitalized with SVC (superior vena cava) syndrome. The port caused a dvt in my left shoulder, then I had blood clots all over my neck, chest, and back which blocked the return of blood flow from my face. My svc was 95% blocked with the port being the only thing that kept it open.

What I found out from the interventional radiologist was that the long-term use of ports, pacemakers, and other devices is causing these blood clots and SVC syndrome, which was once rare, is now becoming more common. What I also learned was that no one was really monitoring my port. My oncologist was focused really on the cancer and the pcp assumed the oncologist was on it.

So, knowing what I know now, I would have demanded that the port be taken out after chemo. BTW, I have had two recurrences since the port was put in. Both times, they used brachytherapy to treat the recurrences.

I hope this helps. Best wishes to you.

BluebirdOne

Mercoby,

Such great information and advice. Thanks for sharing.

D.

Ribbons

Looks like I’m the one who started this post about 5 years ago. I got that port out as soon as I could after my last chemo. For me, a positive attitude is important and I didn’t want that port constantly reminding me of something I was done with. Also it was getting hard to get it flushed and working, so out it came. Just my opinion and I’m not trying to say that’s right for everyone. ♥️