Posted on: Mar 25, 2012 06:44PM
I recently finished chemo and my doctor told me that she would like to keep the port in for 2 more years since my chances of having a recurrence were higher during that time frame. My heart sank when I heard those words. I hadn't really thought about that. She told me that if it bothered me to let her know and they would go ahead and take it out sooner.
So, I have just learned I have lymphedema and my shoulder strap on my pocketbook really is uncomfortable going across the port. If I don't have a strap I will lose my pocketbook for sure.
I was just curious about when others had theirs out. One thought is the possibility of needing in the future and for some reason not having insurance at that time.
Thanks for any thoughts on this.
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Posts 1 - 23 (23 total)
Mar 25, 2012 10:56PM Outfield wrote:
I'm well-aware I have a high recurrence risk. My port was incredibly valuable to me during chemo and a few neutropenic fevers. But it can be a quality of life issue. I'm skinny and I have little kids and play sports. Getting hit in the port by a kid's head or an errant elbow was pretty painful. It also showed not only through my skin, but through my clothes. So I had mine removed when it seemed pretty clear that although my white blood count didn't recover well after chemo, I wasn't getting infections anymore. That was about 17 months after finishing chemo.
I asked the interventional radiologist if it would be possible to put it back in if need be. He said yes. According to him, it often can't go back in exactly the same place, but it's generally not a big deal to find another.
The insurance issue is an important one. I didn't have to worry about that during my treatment and have fairly good job security. The chance for me that I will lose coverage isn't high, so I did not consider that.
Mar 26, 2012 11:23AM NancyD wrote:
Maybe compromise and leave it in for a year. I was also destressed when my onc wanted me to leave mine in after chemo was finished. Having to have it flushed every six weeks was taking a lot of time off from work (the onc's office only had day hours, and nothing early or late). I remember every time I went, I asked if it could please come out sooner.
When he finally said yes, making the appointment with the surgeon was one of the happiest days of my life post-cancer.
Mar 28, 2012 10:21PM fondak wrote:
They told me I would have the port flushed every 3 months. Every 6 weeks, though inconvenient, sounds like it would be better for maintenance of the port.
Mine shows through my clothing also and can be very obvious with something like a tshirt. Do you still get infections easily?
Giddyup: I noticed you will have 5yrs coming up and Nancy has 4+ now! That's exciting and very encouraging. I try to stay positive and overall do pretty well at it but sometimes things creep in my mind. Then I just try to focus on what all I have to be thankful for and it gets me back on track. God has been so good.
Thanks ladies & good night.
Mar 28, 2012 10:30PM Hattie wrote:
i had one put in late during chemo when i thought i would need more rounds and was having surgery anyway. when i was done with chemo, i wanted to keep it just in case i needed it again. my surgeon said, you're done now let's get it out of there. that felt right to me. (i loved him for that. gave me the confidence to step forward even tho it is all uncertain.) the port's gone and haven't needed it. go whichever way you want. check the insurance tho--that's a fact ! but cancer coming back is NOT!
Mar 28, 2012 11:58PM bak94 wrote:
I wound up with an infection in my port after my last chemo. We decided to put in a new one because i am still having zometa and blood draws and I have had lymph nodes out on both sides and kinda bad veins. I am not excited to keep it, but it does make my life a bit easier. I wear pretty loose clothing and since bmx nothing low cut so I am able to hide mine. I am not sure how long I will keep it, but it is better for me than having them dig around in my arm for a good vein to get blood! But now I have an ugly port scar on both sides:(
Mar 29, 2012 07:36AM diana50 wrote:
my docs wanted to keep mine in for a couple of years after chemo. i said no. it was taken out 6months after i finished chemo. i was told they can always give you another one if needed. so far, so good.
Mar 29, 2012 12:08PM Octobergirl wrote:
My docs at an NCI center did not encourage me to leave my port in. They said there was no reason to take the risks of infection/complications and it would be no big deal to put another in should I ever need it.
Mar 29, 2012 12:23PM - edited Mar 29, 2012 12:33PM by Kicks
fondak - I have never heard of going 3 mths between flushes. After chemo the Center said 4 -6 weeks but the card/info from the port manufacturer said every 4 weeks. So because my flushes are done at my local VA Clinic we have decided to do it every month either on the 22 or 23 or closest open day so it's easier for me to remember.
I had seen/read so many saying port was out right after end of chemo I was ready for a fight with Dr T as I wanted to keep it. When we talked about I was surprised - he wanted me to keep it as I'm high risk. (All my Drs agreed). So it's been in for 2 1/2 yrs since it was put in and will be for at least another 2 1/2.
I visualize things a bit weird. I see my port as my little warrior/soldier standing sentry duty. The Monster won't raise it's ugly head because the warrior is standing duty and is ready for a battle if needed. So far working - 2+ yrs post TX and still riding NED - not bad for IBC.
I have great veins so it's not used for draws. Actually, the first time I saw the tech who does most of my draws he was running behind because of a guy with bad veins and he expected to get further behind with this 'little old lady' that would likely have 'bad' veins. Wrong - I still get teased about my 'man's veins' in a woman's body.
Mar 29, 2012 08:41PM ATeamNana wrote:
My port served me well since I did not have "good"veins at the time. But it was painful when my grandsons would lean against it, so soon after surgery was done ( I had chemo first) I had it removed. My oncologist was good with whichever decision I made on removal. I am glad I had it removed and I plan on not needing another one:).
Mar 30, 2012 10:35AM bethcw wrote:
I had mine removed 2 weeks after the last chemo. I thought of getting it out as passing another milestone.
Mar 30, 2012 11:34AM clariceak wrote:
I had my port in for about a year. I thought it made sense to keep it in after chemo since I was IIIC, and I'm not skinny so the port really didn't bother me. My onc said it needed to come out after a year because even with regular flushing the risk of complications would rise.
The original insertation was rough, (conscious sedation lacking the sedation component), so when I had my ooph I jumped at the chance at having it removed while I was totally knocked out.
Mar 30, 2012 10:55PM bak94 wrote:
My doc also said flushing every three months is ok, but they prefer 6 weeks.
Clarice-I had my infected port out while awake, with morphine which was the first time I had morphine and I hated it. It was a horrible experience! It hurt like h*ll as I flet everything! I think it hurt so bad because it was infected and I had an infection all around it also, so good for you for having it out while you werer knocked out!
Mar 31, 2012 05:58AM financegirl wrote:
My onc said I'd have my port for 6 months to a year after last chemo - am guessing since I had a lot of node involvement and the chance of recurrence is high. I finished chemo in November. I never heard of flushing the port every 3 months - I was specifically told once a month or not longer than 6 weeks in between.
Mar 31, 2012 07:37AM Kicks wrote:
Just got the card for my Bard Power Port out of my billfold as I was tild to keep it with me in case it's needed in an emergency. It clearly states "Port not in use: 5 ml heparinized saline, every 4 weeks.". I would think its the protocol to follow as that's what the manufacturer says. As I said I have mine done once a month and I do run a couple of days over as it's easier for me to remember if I keep it on about the same day every month so on the 20th I call to verify the date and time. Going 3 months would scare me and seems like asking for problems.
Apr 2, 2012 09:04AM fondak wrote:
Thanks so much everyone. I'm going to go up and ask about it today after I finish radiation. The doctors are in the same building. My last treatment was Feb 14 so I am overdue but certainly not like it would have been.
Apr 2, 2012 09:14AM sweetcorn wrote:
I got mine a year ago, and finished chemo in July. The surgeon wanted to keep it in for awhile, but I am to see her on the 26th of April, and I hope to get it out then, or soon thereafter. My DH had his taken out shortly after his chemo for colon cancer.
Apr 2, 2012 09:25AM Annie62 wrote:
I know I'm a bit late to the game with this response. My onc left it up to me. I took it out. When I had a recurrence 6 year later, I got a new one put in. That one is out now too. Before I did, I asked if scar tissue would cause a problem if in the future I needed a third. Vascular surgeon told me no.
If you will be having scans 3 or 6 months out, I'd keep it that long. After that, remove it if it bugs you. I personally felt like a Borg with the first one.
Apr 2, 2012 09:46AM - edited Mar 5, 2014 09:08PM by lago
I'm not a stage III but HER2+. My onc also wants me to keep my port for a total of 2 years since that is the highest risk for recurrence. I've had mine since Oct 4, 2010. I get if flushed every 3 months. I try to have doctor's appointments scheduled the same day to avoid extra trips.
The issue I was told is my treatment center will not replace the port in the same place due to increased risk of clots.
Mine is pretty obvious but I just don't care. I do wear clothes to hide it when going on a job interview. That is the only time I hide it.
Apr 4, 2012 12:19AM AnacortesGirl wrote:
Still have mine in. But with where it located, it doesn't bother me. It's actually my second port. I'm thin (although not as thin as I used to be!) and the first one poked out so bad it finally eroded a hole. So if I had this one removed and then had to get another one, I'm not sure where it would end up. Just don't have much fat in that area.
My docs do flushes every 4-6 weeks also. My SIL is an RN and does infusions and she is adamant about no longer than 6 weeks. She's seen problems with clotting or pooling and getting infections. As she points out, it's a direct pathway to the heart. I'm heeding her advice.
Apr 4, 2012 09:42AM KSteve wrote:
My port was removed about 10 days after my last chemo during my BMX surgery. I was so happy to have it removed!
Apr 5, 2012 06:18PM pupfoster1 wrote:
I just remember asking my onc towards the end of my chemo "when do I get my port out?" and she said after your last tx to go ahead and make an appointment to get it out, which I did! Never any discussion as to whether keep it in or not, so I for one am glad to see it gone. Also remember you do have to have it flushed out pretty often, so that might be a factor to consider as well.
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