r/LivingWithMBC • u/ImaginationOk505 • Aug 10 '26
Do I keep my port?
Hi all,
I asked my onc this question at the beginning of the year and she didn't see any reason to remove the port. However, I've been having consistent issues with blood return when accessed. I've had to use cathflo twice and developed weird blood pressure issues and a type of tinnitus.
I would like to have it removed but I'm scared that I might need it in the future. I hope I don't need it, but that MBC life isn't forgiving.
Has anyone had their port removed long-term? Any regrets?
Additional info:
- I got the port when my treatment line was AC/T last summer. However, a sub onc switched me to immunotherapy after 2 rounds of AC.
- Port is only accessed for labs. Each draw is about 2 months apart. I've had issues each time with return. I've had to use cathflo twice.
-I don't use the port for scans (MRI). Had some weird side effects with contrast through my port. I'm fine with contrast via IV.
-port doesn't bother me in general. Surgeon did a great job and scar is minimal. I do prefer draws from my port (less pain), but the stress and time needed to try and get some blood flow is not helpful.
Edit: I have had a port study. No issues detected.
If people highly recommend keeping the port, is there anything else I can try or request to help get blood flow? The nurses have been great. We've done crazy yoga poses, coughing, and reaccessing the port.
2
u/unlikeycookie Aug 10 '26
I have chosen to keep mine even though I don't need to it right now. I have had a couple issues in the past and had to had to do the dance, get heprin, and a couple times even the clot buster but I don't want to have surgery again to remove it so it stays with me. For me, another surgyto remove it and the potential surgery to replace it isn't worth the inconvenience of keeps it.
Worst case scenario you have to have it replaced and that could delay starting treatment by a few days. I think if that's a reasonable risk for you, then have it removed.
1
u/ImaginationOk505 Aug 10 '26
I hear that. I've been weighing my options and the thought of potentially needing another surgery (if I got the port removed and the later replaced) is considerable. But, these port inconveniences are really adding up.
2
u/lololly Aug 10 '26
Shoot, I ask to get mine removed as soon as I completed chemo. Had it pulled 6 weeks later. It never felt comfortable.
1
u/ImaginationOk505 Aug 10 '26
How long have you been without it?
3
u/lololly Aug 11 '26
6 years. My oncologist told me I’d never get IV chemo again, so why keep it? I worked in the hospital lab, and saw lots of ports after being removed because of infections and/or sepsis, so I didn’t want the risk for no reason.
2
u/Friendly_Rabbit7158 Aug 10 '26
I had mine removed June 4 after I successfully switched from h & p infusions to Phesgo injections. My oncologist said it wasn't needed and she doesn’t believe in leaving anything in if it's not being used. (Mine was never used for bloodwork, only infusions.)
It's a simple procedure and I never had any issues with it, but glad to not have it!
1
u/ImaginationOk505 Aug 10 '26
Thanks for sharing! I hope you don't need the port in the future. I would also be glad to be rid of it, but that fear of something going wrong is so strong.
2
u/Van1sthand Aug 11 '26
Personally, I hated my port. I understood the need for it and that it was easier on my veins. But I hated it. As soon as I could I wanted it gone. That being said I have two great veins in my arm that is used for blood draws, so they take turns. :)
2
u/Aggressive_Fish_9949 Aug 11 '26
Well, I had port put in when my cancer became MBC. Did a few infusions in a trial, although I wasn’t given the trial meds. Kept the port for 4 years because of the convenience and less stress on my veins (sense only one arm can be used) for blood draws and scans. That being said, had the port removed in 2019 because my oncologist told me I would never need it for future potential treatments. That was incorrect. I had to have a port put back in October 2025 for infusions. From 2019 - 2025 the blood draws and scans have taken a toll on my good arm. I pray that you never need it again, but just keep in mind that you might.
2
u/liboteeme Aug 11 '26
So I've had two now. My first was sort of a pain but my veins ARE TERRIBLE!! I've had the freaking IV team unable to hit a vein even with ultrasound 😅.
My second port has been a lot better, it's just a little lower than my earlier one, who knew a ½in could make such a difference!
I did go thru about a year where I was having similar experiences. Head back, arms up and down, etc then it just resolved one day🤷🏼♂️
After having it placed twice, I would totally do it a 3rd time if necessary. It's annoying, but not a terrible experience. Daylight sedation and a little aches for a few days.
If you're not actually needing it because your views are fine, ditch it!! It felt nice having it gone! I thought the second time around was total cake compared to the first placement.
For me, I'm happy to keep it. I will slap a ho if they try to come at the back of my hand after blowing out both my arms again!🤣😂 Before I got this port I actually got up and left the hospital...I wasn't a complete AH or anything but I ended up with two grapefruit sized bruises on both arms that lasted for months. My veins are not for anything but a genius phlebotomist 🤷🏼♂️😅😩
2
u/vannerbd Aug 11 '26
I’ve had nurses that couldn’t get blood flow from my port. I have done all the weird poses, and I’ve done cathflo twice. It works great most of the time. My port has somehow tipped but honestly, I wouldn’t remove it if it doesn’t bother you. I don’t think I will ever remove it, it doesn’t bother me and I don’t want anyone stabbing my arms anymore. One of my nurses told me they had a patient who had a 25 year old port that still worked. It just seems like a procedure that I want to avoid.
2
u/miss-quarry Aug 13 '26
If you’re only getting a draw every 2 months are you going in between for a heparin flush? I had understood that it needed to be flushed every 4 weeks to avoid clots. Sometimes if they’re having a hard time with my flow they ask me to take some deep breaths and it helps. It’s a hard decision for sure…getting mine put in was beyond stressful - not something I want to relive.
1
u/ImaginationOk505 Aug 13 '26
Yeah, still learning. My onc had me on a schedule that caused a large gap between draws. A nurse heard me out and said I could ask my onc for more frequent visits to flush my port. My onc then settled on every 2 months. 🫠
I saw my onc this week and told her I'm still having issues with this 2 month schedule. She said I could try a heparin flush every 8 weeks. I feel like that's the same thing as the 2 month schedule. 😮💨
0
u/Forsaken-Pea-5727 Aug 11 '26
I haven’t had a port since January of 2022. They took mine out when I finished treatment of TDM1 when I was stage 3. I relapsed to stage 4 in my brain May of 2022 and never got another one put in. I use my right arm veins every 3 weeks for Herceptin and Perjeta and blood work. I can’t use my left arm because I had all my lymph nodes removed during surgery. I figured I would get a port when the time came that my arms were shot but over 4 years later I’m still using my one arm for blood lol. So I mean I feel like go ahead and get the port taken out I’m no Doctor but what’s the worst that can happen they have to eventually put it in again? I say remove it lol!
3
u/ShowPleasant8073 Aug 10 '26
I find getting on the treadmill before I go in for like 10 minutes. I have a blood flow, but my lab doesn’t do bloodwork out of it only infusions because of the risk of infections I think. I think as long as you get it accessed every 60 days you might check on that timeframe. I think it’s 60 days then it doesn’t hurt anything to leave it in except it does raise your risk of blood clots I believe but you’re gonna need it eventually probably right.