To Remove Port or Keep it?

MAliceR
MAliceR Member Posts: 98
in Colorectal Cancer #1

Hi Everyone, I have a question. A month ago, when I saw my oncologist, she told me that if my next scans were clear and my CEA was stable, she would recommend I remove my port. She feels that keeping it in just in case I have a recurrence makes it harder to move forward after treatment. I have spoken to my counselor about it and she agrees with my Dr. I had pretty much set my head on havng it removed until last week when I went in to have my port accessed for my scans. I mentioned to the technician I was going to have it out and she was not for it at all. She said in her opinion people who have their ports removed to soon run a risk of having to have it pit back in if they have a recurrence and she was very much against having it removed. She said if I remove it I can't have it placed back in the same spot and might end up with a port that was uncomfortable and not as well placed as my current one. Now I don't have a clue what to do? I have had clean scans for almost a year after treatment, but is it too soon to have my port removed? I don't have to decide immediately, but I am not sure what the best course of action is. I would love to have it out and not have to look at it every day or have to go in every 4 weeks to infusion and have it flushed or have to worry everytime I travel that security will question me about it (it happened in France and was quite an ordeal), but now I am afraid to have it removed. Any thoughts?

Thanks!

Comments

  • myd
    myd Member Posts: 40
    #2
    To remove or not to remove port

    I am sorry that you must make this decision.  My wife had stage IIa crc from 12/09-01/12.  We also faced the same decision.  Believe me, i understand that it is almost a decision of Hope.  Am I inviting negativity by keeping it? A question that is natural to ask.  

    My wife had it removed six months after the first round with this monster. It had to be put back, but as it has been explained to you, on the other side of her chest.  I do not want to bring you down, but I'm sharing with you our story.  

    It is my hope that you are one of the lucky ones that may decide to remove it and it will never return.  All I can add is that, do your part to take care of your body.  If it is not meant to return, you and your family will be very happy.

    God Bless

    MYD

  • zx10guy
    zx10guy Member Posts: 273 Member
    #3
    I had mine removed a month

    I had mine removed a month after my last chemo treatment.  I happened to ask my oncologist on my last check up visit while on chemo.  He said to wait at least 2 weeks after the last chemo session and he'd be fine.  I was a bit suprised by this and my CRC surgeon was too as he did the procedure to remove it.  My CRC surgeon even wanted me to call back in to my oncologist's office to get a second verification which I got.

    In retrospect, I'm glad I did it.  I hated every moment with the port.  It was uncomfortable.  I had to have it on my left side as the attempt on the right failed.  So strapping in a seat belt when I'm driving was sometimes a painful affair.  And I developed an aversion to the saline used to flush the port.  The smell and taste I would get from the flush would make me severely nauseous.  I figured this.  If I have a recurrence, I have bigger things to worry about than possible complications with having a port put back in.

    FYI, I'm coming up on 2.5 years from my initial diagnosis.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #4
    Hi Alice:
    I am from the

    Hi Alice:

    I am from the uterine board but I saw your post and thought I respond.    I had my port in for over six years.  I only used it for chemo for 6 months.   The doctor kept saying after the next clean scan to remove it but when I had a clean scan he kept putting it off.   He told me it was easier to take out than put in and since it wasn't bothering me to leave it in.   However, he retired and my new doctor didn't want to remove it.  So every month for over six years I had to go get it flushed out.   In the meantime, I had changed providers for my appointments and as a result, the local hospitals decided they weren't going to allow me to have my port flushed there.  I ended up going seven months without a port flush!   Finally, I found a local doctor who would remove my port.  

    I am finally glad it is out.  It had twisted and was deep in my chest.  But I am glad I don't have to take an hour every 4 months for a 5 minute flush.   

    My only advice to you is if you are not sure you can wait.  Waiting a month or two is no big deal.  Its already in there.   It is something you have to be comfortable with.  You are the one who is living with it and having it flushed every month.  

    My best to you.

    Kathy

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    My opinion is

    if it were me, I would harken to my Doctor before the technician. 

    My Oncologist wanted mine removed regardless of recurrance because of the risk of infection.  I had it removed and then had a reccurance nine months later. Luckily I didn't need another one, but if I did, I would not regret having it out. 

    good luck making your decision. Either way will proably work. 

    Trubrit

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #6
    I had mine removed 18 months

    I had mine removed 18 months NED after my second scan.  It didn't really play any more of a role in letting me move on than the cancer itself.  It takes longer than a year to move on mentally, port of not.  I'm at 26 months and it's happening more and more.  I only think about cancer now when it comes on TV or someone dies.   I was glad I kept mine in until after the second scan, putting it back in would have annoyed me.  Also every 4 weeks is just an estimate for flushing, I was doing mine every 6-8 and I was fine.  Sorry about the travel ordeal, there is a form that you can carry to prevent that but I don't know how other countries view the form.  My personal vote is to leave it in depending on how long you have until your next scan.  If it's 6 months, just leave it, it'll fly by.  If it's a year, take it out.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
    I have had ports on 2

    I have had ports on 2 different occassions and had them removed. I refuse to have another port. Even when I was doing IV chemo last year I just did a regular IV, 

  • TheLadySkye
    TheLadySkye Member Posts: 203 Member
    #8
    Port Removal

    The decision seems to be up to you and your oncologist.  I hated my port since day 1.  It was uncomfortable, was always poking and stabbing me, would tip sometimes just make things exciting for the chemo nurses, and was a constant reminder (as if I needed it) that all was not right in my corner of the Universe.  I had come to dread the smell and taste of the flush process (as well as the smell of hand santitizer) to the point where it was a visceral and traumatic response.  I "lovingly" referred to mine as My Nemesis.

    That being said, I had every intention of deferring to my medical team when it came to what to do with the darn thing.  Originally they said at least six months after chemo.  Then if I had a clean scan after that, we could DISCUSS taking it out.

    So imagine my surprise when chemo ended and I had a CT two months later.  Blessedly NED.  Doc gave me the results followed by, "So, how would like to get that port out?"

    ZOMGREALLY!??!

    I'm pretty sure it was decorum alone (and mild fear of a mandatory psych hold) that kept me from happy dancing right in her office.  I was surprised, but was thrilled that she seemed to think I was doing well enough to have it out.  And while no one can say for sure and of course all doctors do things differently, she assured me that no doc was ever going to encourage a patient to have it out if they thought they would need it again.  Not a crystal ball by any means, but certainly a sliver of hope.

    Alas, the surgeon who removed the port would not let me drop kick it down the corridor after.

    Kind of a bummer that.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #9

    I'd listen to your doctor and not some nurse.  Some people are comfortable leaving it in, but mine hurt and was uncomfortable.  When she said we could take it out if the scan was clear, that was my first question - when can we do this.  Good luck with your decision.  It's just a step moving forward, but you need to be comfortable with it.  Awesome on your great scan results.

    Kim

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #10
    WOW crazy love/hate thing

    After doing chemo (oxi in particular) through the. veins and having them burn like my arms were stuck in hell and the veins collapsing, someone mentioned a port.  I had it put in ASAP, and what a relief, no more burning viens or the two or three needle sticks to find a vein.

    I've had my port for over 5 years and nary a problem (knock on wood), it's never hurt, never bothered me, I find comfort in how it saved me from those burning veins (arms), in other words it doesn't seem like a horrible reminder or thing I want to dump immediately should I ever maintain NED for at least a year then I would consider getting it out.  Until then, it's like an old friend.

    Winter Marie

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #11
    herdizziness said:

    WOW crazy love/hate thing

    After doing chemo (oxi in particular) through the. veins and having them burn like my arms were stuck in hell and the veins collapsing, someone mentioned a port.  I had it put in ASAP, and what a relief, no more burning viens or the two or three needle sticks to find a vein.

    I've had my port for over 5 years and nary a problem (knock on wood), it's never hurt, never bothered me, I find comfort in how it saved me from those burning veins (arms), in other words it doesn't seem like a horrible reminder or thing I want to dump immediately should I ever maintain NED for at least a year then I would consider getting it out.  Until then, it's like an old friend.

    Winter Marie

    My husband loves his for the

    My husband loves his for the same reason as Winter!  he is not an easy stick, so we even make a special visit to the infusion room before scans to get accessed.

    good luck with your decision.

  • marbleotis
    marbleotis Member Posts: 720 Member
    #12
    Out

    I had mine removed after the first set of post chemo scans and CEA's - first opportunity post-chemo.

    It served me well but I wanted that thing OUT........

    I think it is also a help in moving on past the chemo-phase.

  • mk1117
    mk1117 Member Posts: 46
    #13
    Port Removal

    Hello! I haven't been on this page for awhile, but saw your question and thought I'd respond.  I was diagnosed with Stage IIIC colon cancer at age 44 in 2004, and had 6 months of chemo. I kept my port for about year after my treatments ended.  It was for me, like others have said, an uncomfortable daily reminder of my cancer.  I felt a little like I was tempting fate to have it removed, but since it didn't really work that well for me anyway, I had it removed - and am so glad I did.

     

    Take care.

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