When should the PORT be taken out?

NorCalS

I had a port implanted during AC-T chemo. I finished Taxol, surgery, radiation and I start my last cycle of Xeloda next week. My port has always been uncomfortable and the monthly port flushes are an inconvenience. That being said, it’s has only been a year and two months since my Dx. The oncology nurses have recommended I keep the port for a few more years. I know a few other ladies that had their ports removed after their last chemo. What have been your experiences with either keeping or removing the port and the timing? Is it better to have it removed and reimplanted if cancer comes back?

Spookiesmom

I’ve had my port 8 years. I don’t want it out. My choice. Yes, it’s a hassle getting it flushed. It’s been used for surgery when I had my reoccurrence. For labs. By keeping it, I am avoiding possibly 2 surgeries, risk of infection, and pain. To me it’s no different than having a pace maker implanted.

NorCalS

I am leaning toward keeping the port in at least past the 4 year mark. The oncology nurses and MO seem to think it’s a good idea since I have a high risk of recurrence. It is still uncomfortable and I thought I would be used to it by now. I have trouble finding a comfortable position to sleep since lymphadema specialist advised against sleeping on the side that had the axillary node dissection. So I either sleep flat on my back or stomach. I get my port flushed and blood drawn at the same time, so for now it’s not a big inconvenience. I suspect that once Covid is under control, the stress of going to the medical center every month will lessen

Seilien

so i had mine for over a year and my onco was super dodgy about taking it out for months. Then I did because it was itchy. Turns out I needed more treatment and he was quick to order it but said nothing otherwise. Should've just kept it. I switched sides too so it confuses nurses and I have more scars.

NorCalS

Seilien,

Thanks for responding. The skin around my port area is itchy as well. I can also feel it when I sleep on the side where the port is. I was originally going to keep my port in (I will probably still), but I met some women who took their ports out a few months after chemo. They were willing to take the risk of having to put one back in, but that was before Covid.

When they took out your port, how was the recovery? Did you have any problems after they took out the port

LimnoGal

NorCalS- I kept my port for 2 years past my last chemo. I could generally fit the flushes in with some other appointment, so it wasn’t that big of a deal. I figured that having the port in was some kind of karmic protection against a recurrence/progression. Totally illogically, but I’m ok with that.

Having the port out was not a big deal. Mine was done in an outpatient clinic one morningwith a local anesthetic. I could have gone back to work, but I chose not to 😜.

NorCalS

LimnoGal,

Thanks for your response. It sounds like it is a good idea to keep the port in for at least another year. Glad to hear that taking the port out is not a traumatic experience. I was worried that there would be complications

NinjaMeow

My onco has a different approach and had it removed during the expander/final implant surgery. She felt it was too much of a reminder of the “what if”. At the time I was so taken off guard by the whole TNBC diagnosis that I did not even think about leaving it in.

NorCalS

By the way, my port is very visible when I wear t-shirts and thinner material tops. Is this common? Since I’ve had my port, I wear thicker tops or a jacket to cover up thenport

MinusTwo

I selected where I wanted my port & drew the outline of my straps on my chest with a 'sharpie' before installation - so no it never showed. I was HER2+ so I had Herceptin for the rest of a year after chemo. And I ended up with lymphadema so I had extra incentive to keep my port. I hung on to it for 4-5 years until they could no longer flush enough to draw blood. My BS would not remove the port in her office but I had very light sedation at the hospital.

Edited to say - 3 years down the road you can not see the scar at all.

NorCalS

MinusTwo, I wish I knew about this site when I began the cancer journey. I had no idea you could pick the spot where the port is located. My port is located very high up on the right side of my chest (very thin boney area) and it protrudes through my skin. It is very visible. Even my oncology nurses have commented on how it sticks out. After over a year, every time I get it flushed, the nurses ask me if it was recently implanted.

MinusTwo

NorCal - luckily you aren't HER2+ so hopefully you won't need to keep it.

NorCalS

MinusTwo,

I’m TNBC, so not great. At diagnosis, I was IIIc-IV (dispute between BS and MO). So, I know that more treatment is in my future. If my future entails more oral chemo (just about to start last cycle of Xeloda), then I would like to take the port out. If I have a shot at clinical trials (immunotherapy) - was already rejected by keytruda - then I need to keep the port in because they are IV based. I’m just trying to balance current comfort with future needs. Ugggh

Cowgirl13

Hi MinusTwo, I'm interested to find out why your BS would not remove your port in the office. I too had mine removed with light sedation at the hospital. There wasn't even a discusson--thats just what was done. Same for getting a port--I can't imagine having it implanted while you are in the doc's office.

NorCalS

Ninjameow,

Were you relieved that port was removed? Based on your stats, it looks like it was a good decision.

RebzAmy

I was HER2+ and had a port inserted but it was more hassle than it was worth. Putting it in was awful and I had problems with it the whole time, and it became infected and had to be removed. I had the rest of chemo and a year of Herceptin just through my veins and it was fine. My body just didn't like having a foreign body inside it. I kept ending up in hospital because of it.

JCSLibrarian

Hello! I am thinking about having my port removed. I am not having any physical problems, but it often doesn’t work properly. Much fussing when the nurses cannot get a blood draw. I have not had a chemo infusion since January 2020. The port is used when I have a CT scan with contrast. Early on, my MO said he wasn’t a fan of ports as they often get infected. I do wonder about having to go back on chemo infusions and possibly having to get the port reinstalled. I have seen people with really damaged veins and enormous problems getting an infusion started. Just another decision with no known positive result.

Rosiecat

I wasn't offered a port, but did manage to persuade my oncologist to let me have a PICC line installed - my veins are very small and difficult to cannulate. Fitting the PICC was extremely easy and painless, just the usual stinging from the local anaesthetic. No blood, no trauma and only took a few minutes in outpatients. It was removed about six weeks after my final chemotherapy - just pulled out in about five seconds by a nurse.
The downsides : PICC lines need flushing every week, mine was done at the chemo unit. They can become blocked as mine did on two occasions, but this is easily resolved. Showering can be difficult as PICCs must be kept dry.
If my port was painful, my choice would be to have it removed, safe in the knowledge that if I ever needed chemo again, I could have a PICC line fitted very quickly and easily.
Hope this might help.

NorCalS

RebzAmy,

My port has not gotten infected, but it does get itchy (I’ve had it in for over a year)and I have had to have an ultrasound to make sure I did not have a blood clot. So, it I just another thing to worry about. Unfortunately, my first chemo infusion (AC) was through a vein because there was not enough time to implant a port and my arm swelled up the day after the infusion. MO doesn’t think my veins can handle chemo, so I don’t have a choice but to use port or maybe PICC.

JCSLibrarian,

My port is not used for anything but chemo infusions. MO does not want the port to be used for anything other than infusions and blood draws from oncology nurse. My last blood draw was this past Friday, so basically, I would be keeping the port in with the idea that I will need more chemo.

Rosiecat,

I didn’t realize that a PICC was even an option. I’ll ask MO. Thanks for the info

MinusTwo

cowgirl - I did ask about having the port removed in the office and she said they never do that in case there is a complication or some kind of emergency. That said, I was awake enough to watch them pull it out. Weird.

Sorry about all your fires. I grew up in the Bay Area and can't imaging 100 degrees in SF.

NinjaMeow

Yes! It felt like I was putting each part of cancer behind me however I never really thought that keeping it was an option! I remember it itching a lot and sticking out. Once I got it removed, it healed nicely but was pretty pink so after a year I had it lasered when I got an IPL facial done. Today it is barely noticeable.

NorCalS

Ninjameow,

So good to hear a positive outcome from TBNC. We TNBC gals really need to hear about the good stuff. Do you think the laser treatment would work on lumpectomy scars

Cowgirl13

MinusTwo, thanks for the info on why some doc's don't take the port out in the office. I wonder what those complications could be. I was totally out when my was removed and I am so glad. There is such trauma around everything with a cancer diagnosis it seems that this is a no brainer to have the port taken out in the hospital where it is so easy.

Where did you live in the bay area? You'd be surprised with the heat and SF's highest temperature was 106 in 2017. Imagine!

NinjaMeow

Scars are scars no matter how they arrive and a laser treatment usually helps. I get an IPL laser treatment to help with dark spots/freckles, aging spots, chest crepe and I just thought of it as killing two birds with one stone! Anti aging and scar repair. Hope this helps

NorCalS

Ninjameow,

Thanks for the tip. My mind is just not working as well, so didn’t even think about laser treatments for all the scars I’ve gotten. When you posted, a little light bulb went off.

NinjaMeow

YW! Glad to help

astyanax66

Hi, all ,

I didn’t like the port. Had it placed in day surgery, and it hurt for weeks, plus I got very nauseated. It did work for my 12 Taxol + rest of Herceptin treatments, but it always bothered me. Also, anywhere except the infusion suite, no one would use it for blood draws. A few times, it temporarily stopped up and required “port aerobics.” After Herceptin was done, I begged to have it out. Easy peasy, with a local in the office. Now, 2.5 years later, I still have slight puffiness in the area where it was. It was not great for me, but I like to think everyone would have the choice.

Dee

MinusTwo

Interesting issues. I LOVED my port. But I got to pick where it was going in before she placed it. Since I did end up with lymphadema, there's no way I could have had all those sticks & pricks. It made me very sad when they finally took out the port. It meant I had to go find someone to do blood draws every 6 months from my foot/ankle. And those people are few & far between.

NorCalS

I spoke to MO about timeline for the port. MO thought i could take it out and if there is a recurrence (I’m TNBC), they can just use the veins in my arms to do additional treatment. That is not something I would even consider because I had AC before I had my port implanted and my arm swelled up to a frightening amount. I don’t like my port, but it doesn’t sound like it’s a reasonable option to take out out at this point

MinusTwo

NorCal - I had my port for just over 3-1/2 years. If I remember correctly, I was told I can have another one installed if my cancer recurs. Or at least I could get a a picc line, although they are harder to keep clean if you live alone.

Mariadelpilar

hi NorthcalS,

I had my port taken out 4 months after my last chemo I hated it! It was uncomfortable and painful. The surgery to get it out was easy. Glad I did it.