Her2 positive - how long did you leave your port in?

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jacksnana
jacksnana Member Posts: 168
My surgery was two years ago last November and I was planning to talk to my breast surgeon next week about taking it out.  Today I went for a port flush and the tech said a lot of women who have had breast cancer leave it in for five years!!  So just wondering how long did you her2 positive ladies leave yours in?

Comments

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited March 2012

    From what I've seen, it depends on whether you can keep your port functional, and how emotionally important it is to you to have it out. I kept mine for 7 years, not primarily for recurrence after the first 3 years but because I was using it every 3-4 months for draws for a clinical trial I am still in, so it was helpful for that. (My draws now are 6 months apart, and the flushes were expensive enough that I had it taken out.)

    A.A.

  • PoliceWife84
    PoliceWife84 Member Posts: 136
    edited March 2012

    From my first chemo treatment on 1/18/10, (I did 6 rounds of Taxotere, Carboplatin & Herceptin), till my last Herceptin infusion on 1/18/2011. I'll be in remission 2 years on May 28th. :)

    Love,

    Brandi

  • jacksnana
    jacksnana Member Posts: 168
    edited March 2012

    Thanks AA and PoliceWife - the port doesn't bother me and I don't mind the monthly flushes. I just don't like the idea of taking the Warfarin, even though it's only 1 mg, for such a long time.  My onco does blood work every four months for at least the next couple of years, so it's very convenient for that. Glad to be able to come here to see what others have done!  Thanks.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2012

    I had mine out 6 days after my last herceptin

  • sheila888
    sheila888 Member Posts: 25,634
    edited March 2012

    I kept it for 18 months after my last Herceptin. From June 2005-March 2008

    Last Herceptin was September 2006

    It was my choice.

  • Caya
    Caya Member Posts: 971
    edited March 2012

    I had mine taken out 3 months after my last Herceptin, which was May 2008.  My onc.suggested I have it taken out, otherwise I would have to come in for flushing every 6 weeks or so.

  • MizMarie
    MizMarie Member Posts: 332
    edited March 2012

    I will be on Herceptin for 5 more months, but it never occurred to me to leave my port in after treatment is completed "just in case".  I'm thin, and the port sticks out a good half-inch from my chest - can't wait for it to go away! 

  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited March 2012

    I never had any problems with my port, and never had to take Warfarin.  I didn't like the idea of going in every 6 weeks for a flush, just didn't want to go back to the chemo ward again after finishing treatment, so I had mine out just 3 weeks after my last Herceptin infusion.
    I decided I was never going to need it again anyway :-)

    Trish

  • Wendyspet
    Wendyspet Member Posts: 246
    edited March 2012

    My onc said to leave it in for 5 years, but my BS said not to: she thought that scar tissue would form around it, and she could easily get it back in if it ever was necessary.  I still have herceptin thru June tho.

  • mmm5
    mmm5 Member Posts: 1,470
    edited March 2012

    one day after Herceptin finished, I didn't like the idea of my mind creating "what if" scenarios, I was done and needed to move on

  • LouLou40
    LouLou40 Member Posts: 180
    edited March 2012

    My Onc was happy for me to have it removed as soon as I finished Herceptin. I am having zometa for osteoporosis every 6 months and just have an IV inserted for that.

    Personally I believe the risk of infection or clot leaving it in longer outweighs the "Just in case scenario"

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2012

    Wow mmm5 - I thought I was quick

  • Sassa
    Sassa Member Posts: 1,588
    edited March 2012

    My oncologist asked me to leave it in "in case we need to start chemo again."

    I left it in for 1 1/2 years after herceptin (2 1/2 years for chemo) and had it removed with my doctor's blessing because I was doing reconstruction, had finished with the tissue expansion process, and wanted to do the exchange without the port.

  • marjie
    marjie Member Posts: 1,134
    edited March 2012

    Mine was removed about two weeks after my last tx.  My onc felt there was no need to leave it in and I was glad to get it out and move on....

    ....should it happen that I need one again, then they'll just have to put another one in.

  • REKoz
    REKoz Member Posts: 590
    edited March 2012

    I had mine put in during BMX and taken out after H. and during exchange. One less scar is fine with me. Like you MizMarie, the thing stood out on my boney chest as if I had a wine cork in there!

    I am interested though in why some Oncs encourage it to remain for awhile.  Given the high odds to remain cancer free, I wanted it out asap. Not tempting fate here but just another way for me to move on.

    Does it have to do with stage or Onco score perhaps? 

  • lago
    lago Member Posts: 17,186
    edited April 2012

    My onc likes her patients to leave their port in for a total of 3 years because that is the highest risk recurrence. At my treatment center they will not put a port back in the same place because there is a higher risk of clots. I get mine flushed every 3 months. I try to coordinate it with other appointments. I've had mine since Oct 4th 2010. 1.5 years down, another 1.5 years to go.

    But she did say if I wanted to take it out right away it was my choice.

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited April 2012

    I finished Herceptin in April of 2009. Had a PET/CT a few months later (no symptoms, just standard operating procedure for my onc); my onc's NP gave me the good news about the scan results, then her first question was "Are you ready to get your port out?" And I did that as quickly as they could schedule the procedure.

    January 2012 marked 4 years from my dx. I love reading posts like lago's about the highest risk of recurrence being in the first 3 years.

  • negirly
    negirly Member Posts: 318
    edited April 2012

    I had mine out shortly after finishing herceptin.  I was excited when my onc asked "when do you want it out"? If i should need chemo again I will have another placed.

    K

  • Iamstronger
    Iamstronger Member Posts: 378
    edited April 2012

    I had mine removed during my DIEP surgery, which was 2 months after my final herceptin.

    V

  • nora_az
    nora_az Member Posts: 720
    edited April 2012

    5 days after my last Herceptin it was OUT of there. My onc told me to have it removed. Said it was of no use to me and had too many risks of leaving it in there. (blood clots, infection etc)  Told me to take it out and enjoy life. I was so happy because I hated the stupid thing. I have a thin chest so I was always bumping it. It served it's purpose but otherwise was  pain in the butt. My bra always felt uncomfortable with it, seat belts were uncomfortable. Life is good now  :)

  • Mmahle46
    Mmahle46 Member Posts: 52
    edited April 2012
    Hi!  My last Herceptin was in Jan and I got my port out in Feb Smile
  • Faith316
    Faith316 Member Posts: 2,431
    edited April 2012

    I still have mine in.  Original dx of DCIS and IDC was 4/2008.  I had lots of pain recovering from my port insertion surgery so decided I didn't want to go through that again and would keep it for awhile.  Then in 6/2009 I was dx with IBC.  I have now been NED for 2-1/2 years and have been on Tykerb for 2-1/2 years.  My doc wants me to try and go off of it this summer.  I asked about taking the port out now and he says no, not now, especially since we are going to try taking you off the Tykerb.  So, it will stay in.  It doesn't bother me.  I do have to get it flushed every couple of months, but I have to go in for bloodwork every couple of months anyways, so it is no big deal. 

  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    I just went for a flush Friday and I'm keeping mine--They can't access any blood from either arm or do any work on either of my arms---so it's to my advantage when they need to do work ups for me.And I'm still getting testing all the time so why not (for me).

  • Faith316
    Faith316 Member Posts: 2,431
    edited April 2012

    I, too, sometimes have trouble giving blood from my arm.  When I had my mx in Feb. 2010, they could not get an IV started on me.  Finally, my surgeon came out and said to just take me into surgery and she would put my IV in my port.  So, I was glad I still had it that day!

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited April 2012

    I had mine out within weeks of my last Herceptin. I just needed it out.  I figured if the cancer comes back I will just get a new one...

  • Birds
    Birds Member Posts: 67
    edited April 2012

    Had mine out within one weak after last use.  My Breast surgeon said it was a record for her to remove one so fast.  Her hospital likes to leave them in 2 years in case you need chemo again.  But, my onc said take it out and start living life again.  I like my onc.  I am now 2 and 1/2 years since dx. 

  • Kellennea
    Kellennea Member Posts: 8
    edited April 2012

    I had mine out after my 6 rounds of TCH. We did a trial run of Herceptin in the top of my hand and I didnt experience any problems so I removed the port and did the next 10 rounds of Herceptin in my hand.

    I couldnt wait to get my port out!

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2012

     2 months after my last herceptin I had my port removed during my stage 2 surgery.  I figured it was one less procedure if I had it removed during a planned surgery.

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