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    Keeping the chemo port after chemo is complete "just in case"?
    An_243326 posted:
    this is my first post here.
    in December 2010 I learned the lump in my breast was "Intraductal Adenocarcinoma"
    To try to make a long story short, it turned out to be a type IIB, and estrogen positive. I had an oncotype test and I believe it said this would have a 20% chance to come back if I do everything the doctor said (which is the following):

    I had a lumpectomy, followed by many months of chemo (I'd have to look on my calender to see exactly how many from start to finish, was from early in the year to September). I know I was done with chemo in early/mid-September. Right after that I had 37 radiation treatments. I started taking Tamoxifen literally the next day following my last radiation treatment and I've been on it ever since.

    The only thing I haven't done was have my chemo port taken back out.
    When she told me it was time to have it out I told her I wanted to keep it a while "just in case."

    While chemo sounded scary and so has this medication I will need to take for a total of five years, really I've been lucky, chemo wasn't as bad I I thought and I barely know I am taking this pill every day. Radiation was kind of rough, had to take breaks but got through it. Having the chemo port surgery was hard on me and I keep thinking just how hard on me it would be to have to have them try to install another one again a second time, if I need it again.

    Since keeping it is entirely my own idea and the one thing that's off-course from my doctor's plan, I'm not sure how long I should keep it. I was thinking for the five years I have to take this pill, guessing my odds of having the cancer back might be greater more early on, but I don't know. I have to have it flushed once every two months. Has anyone else kept their chemo port 'just in case' for a while after, and if so, for how long?

    I have already decided that if it comes back that once again I will do all that's suggested (I heard otehr women in the radiaton area saying "she wants me to take the Tamoxifen but it sounds harsh, I don't think I'll take it" etc).

    My logic is that if I don't do all I can/should and then later it comes back I know I'll be kicking myself, thinking its because I didn't.

    Mastectomies would be the scariest prospect for me but even if it came to that, I know I would. If I know I've done everything in my power, then I can rest.
    Since I'm charting my own course with keeping my chemo port, I would really like everyone's thoughts on this. Thank you, this is a good website, very informative and supportive

    brcansur responded:
    Hello and welcome,
    I will start by saying I am 4 years since my dx Feb 13 I am triple neg and I decided to have a bi mast in March of 2008 I had chemo started in May and ended in Aug of 2008 . My cancer was in the right breast but I had pre cancer in my early 20's in my left breast lumpectomy's and all kinds of test from then on and just didn't want to do it any more so decided to have a bi mast.
    I had my port put in April of 2008 and my onc told me it had to stay in for 3 to 5 years well needless to say it is now 4 years and she has told me she would like it to stay in for 5. I have no problem with that due to the fact it is much easier when I have surgeries and I would rather not have to get another if for any reason something should happen I need it. So I just leave it a lone and get my port flushes every 6 weeks. Yes it can be a little painful at times like if something presses on it babies head, purse strap, seatbelt but I can deal with that for now. Much better then going through that surgery again like you said it wasn't any fun so when it comes out it is hopefully staying out for good.
    I personally think you are making a good choice most of the doctors in my area have you keep them for at least 3 years but mostly 5 years from the time you are dx. Best of luck to you have a great day angel hugs Roberta,
    rachael67 responded:
    Welcome to the group...Not one you'd necessarily choose to join, but here you will find so many folks who not only care, but who have been there/done that, and fully appreciate each step of the journey!

    I can offer little regarding having a port in place continuously. I do know that many of the members have continued with the port for some time past chemo...How long I can't say. My only concern would be the possibility of infection, but it would seem that having it flushed on a regular basis would take care of that.

    As far as the "what ifs" (one of life's nastier plagues!), looking back never does any good and only adds to the stress. Blame yourself because you did all you could at the time???? No, not a street to go down!

    If we let someone else dictate our path, which amounts to little more than slavery, even then we aren't left guilt-free as we think perhaps if we had only taken charge.....!! All we can do is to learn...research, ask tons of questions, seek many opinions, choose the most qulaified physicians and medical team, mull over the possiblities, rely on our own reason, etc. We then have the foundation on which to decide the best path for us and our particular case. At that point all that is left is to take a deep breath, trust and hold on! The angels could not do more!!

    It seems as if you certainly have done all that, and have earned your Warrior badge!! Know you will be in my thoughts. And I do hope you will hear from others regarding your question.

    A bird doesn't sing because it has an answer; it sings because it has a song.
    Maya Angelou
    mhall6252 responded:
    I had my port inserted in June, just before my first chemo. And it was removed in early November after a PET/CT showed me to be cancer-free. I had no intention of keeping it one minute longer than necessary, and my oncologist agreed with that plan. For me, it would not be a big deal to get another port, should that ever be necessary. And I am hoping that it never is! My port never bothered me, but it was a "reminder" of what I had been through. I wanted it gone, gone, gone!
    Read my blog at
    Smile and the world smiles with you!
    edielu responded:
    hi, i had the same-- lumpectomy followed by 8 chemos and 30 radiations. my oncologist said that as long as my port isn't causing any problems he would like for me to keep it in for a few years because it's easier to keep it in and get it flushed every 4-6 weeks than to take it out and have to put it back later if the ca returns. i just think positive and get it flushed. i had the tx jan 2010-july 2011. my last mammogram was negative and i pray that the one i have jan 28, 2013 is negative. prayer and good lifestyle helps us, so hang in there girl and we will prevail!!!! think positive and maybe it'll happen soon. edielu
    brcansur replied to edielu's response:
    I will be at the 5 year mark in March since my bi mast I just seen my onc due to some issues. But all was good I asked about removing the port and she said we can talk at my next appt in 4 months that is what i get each time I ask so doesn't sound like it will be coming out any time soon I guess as long as I have things coming up like this last time the lump that turned out to be scar tissue and the nodule in my lung they are watching she isn't going to let me get it out. I guess it is for my own good so I will not need to get another in if need be for any other surgeries because this is esier. But it doesn't hurt to ask Maybe one of these days I will ask and she will say yes why not I think it is time. Oh that would be a big shocker for me ...
    Well ladies good luck and make sure to get them flushed as long as you have them it is importent to do to keep them working right. Have a great day and new year angel hugs Roberta,
    cindy12345678 replied to edielu's response:
    I had mine taken out right away. Mine you could really see.
    alot of other peoples you can't really. I think it depends on your
    doc. Good luck to you!
    kiwiallright responded:

    My story port is a little different than most, in 2009 I went through chemo, no port was put in, no one informed me about ports etc. When I got to about the second to last port the nurse goes you should have a port put in, I said I only have two more treatments, so I got by without. I managed to go close to two years before we found it again and I was going to the Dr literally every other week, having scans etc. I ended up mentioning to the Dr that I had decided that the nurse would get my chart then hide out of sight tossing a coin to see who was going to poke me and try and get blood out of me. I could only use my left arm, right arm back in 2001 had the lymph nodes removed. I was informed two weeks ago by the same nurse who suggested I get a port back in 2009 that he knew of a person who had it in for eight years. Just keep flushing it. I go in once a month for blood work and flushing. Chemo is awful on your veins, regardless if a port is used from the onset or not. Well that is what I was told.
    Good luck.....
    kiwiallright replied to brcansur's response:
    HI Roberta,

    How is it going, glad all is well with you, I had a wondejoyrful time in Tampa, oh it was so warm, only the last day was cold, cold northwind blue into town. I enjoyed the beach three of the afternoons, then relaxed by the pool one of the day, got in a lot of reading and walking...

    Hope all is well

    brcansur replied to kiwiallright's response:
    I am doing well thank you all test came back no cancer so much better now. I am so happy to hear the weather was good for you on your trip and that you got some sun and beach time in great news. I would have done the same been by the water reading and then some walking near the water I just love being any place there is water. It sounds like the best short you couldn't have planed it any better Seesomeone was watching out for you and gave you just what you needed Now lets hope the weather holds out for you at home also and not to cold for you all at once. May you have a great week ahead angel hugs Roberta,

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