Port Nightmare

rcknrob
rcknrob Member Posts: 9
edited March 2014 in Breast Cancer #1
Hi all, I'm here again wondering if anyone has ever had any trouble with their port. I was told I would be forever grateful for this thing, however, my whole experience has been a nightmare.

First of all, I was not properly numbed when it was inserted and I felt the surgeon cut me.....As I told him he was hurting and I could feel everything, his response was "It's just a little pressure we'll be done in a minute" well needless to say I was furious before I left the operating room.

Then I went for my first chemo on May 20, and guess what the stupid port does not work. As soon as the tech inserted the needle (which by the way they do not use anything to numb the skin here) I felt as though I was going to pass out, and she could not flush the port so she went to the other connection and the same thing after about 1/2 and hour of feeling like I was going to pass out and nothing flowing through this thing she gave up and called my dr. at which point she inserted a reg. iv and I got my chemo.

Now I am faced with the delema of Do I get the port fixed or do I have it removed.

I am leaning toward having it removed but would love to have some advice.

Thanks and God Bless All
Robyn

Comments

  • mssue
    mssue Member Posts: 242
    #2
    Hi Robyn,
    I sympathize with you.If you are not comfortable getting it fixed w/the dr that inserted it find someone else.The reason I say that is because even though I too had problems w/my port it's better than them burning up your veins with all of those chemicals.They told me alot of people don't want to part with their ports -oh contrare-I couldn't wait to have mine removed after finishing treatments.Mine was sluggish at times,but was tilted and tender.I thought that after it was removed alot of the pain would subside,and some did.The area about the size of a softball on my chest sometimes swells,but is always extremely tender.Part of it may be nerves trying to reconnect they say it takes a long time.I didn't realize until it was removed that it was stitched in.
    It is an indescribable pain when they are doing any kind of surgery ,your awake and they hit areas that are not numb.It happened to me too!During the biopsy-no wonder they had me tied to the table-otherwise I would have been out of there.At least my dr had them shoot more novicain(sp) in -I wish your dr had been as attentive.
    But if you can get your port fixed you'd be better off in the long run.You may need your veins later,the chemo will mess them up,thats why they usually start in your hand and work their way up.My thoughts are with you and be strong you'll have enough to deal with through out your treatment plan-get plenty of rest and keep us posted.
    w/Love
    Sue
  • jhope
    jhope Member Posts: 58
    #3
    Robyn, so sorry about the mess, How awful to have to deal with this on top of everything else. ugghhhh GET ANOTHER SURGEON, GET ANOTHER SURGEON!! I agree with Sue, my port has been invaluable, get it fixed with a decent doctor. I went to a hospital once and they had an awful time with my port. When I went to the onc for chemo those nurses knew what they were doing.

    I got a little "bubble" shot over where they stuck shunt in and it never hurt. The only time it kicked my butt was when the nurse MISSED it, dang that hurt. God bless you and hang tough, Julia

    PS: WHAT the H E doulble hockey stix! Have them knock you out! huggs
  • danbran
    danbran Member Posts: 1
    #4
    Robyn,
    When I had my port inserted I was put to sleep, it sounds as if they kept you awake...not fun. I tried 2 chemo's without the port but had way too many problems and the port ended up being much better. I am done with treatment now (hair is grown back..yeah)!!!All I can tell is is if something hurts like that take control and make them stop there is no reason you should have to be in that much pain if there is another way.Good luck.danbran
  • SusanAnne
    SusanAnne Member Posts: 245
    #5
    Hi Robyn. I feel bad for you having to experience all that. I was also put to sleep for the port insertion. Except for one time when some glop was clogging my port, it has worked beautifully. I am so grateful since I knew I was in for a year of weekly treatments. Yet it wasn't until recently on a post here that I learned you could get lidacane gel to numb the area before each treatment. I really don't experience much pain when they access my port, but that might be something you could look into if you decide to fix it. Ask around at your treatment center for a good surgeon, the nurses know the good ones. My surgeon, who I loved by the way, actually told me that sometimes for reasons unknown, ports don't always work. How did you tolerate your first treatment? Hope all is well.
    Susan
  • rcknrob
    rcknrob Member Posts: 9
    #6
    SusanAnne said:

    Hi Robyn. I feel bad for you having to experience all that. I was also put to sleep for the port insertion. Except for one time when some glop was clogging my port, it has worked beautifully. I am so grateful since I knew I was in for a year of weekly treatments. Yet it wasn't until recently on a post here that I learned you could get lidacane gel to numb the area before each treatment. I really don't experience much pain when they access my port, but that might be something you could look into if you decide to fix it. Ask around at your treatment center for a good surgeon, the nurses know the good ones. My surgeon, who I loved by the way, actually told me that sometimes for reasons unknown, ports don't always work. How did you tolerate your first treatment? Hope all is well.
    Susan

    Thanks for the advice, the first chemo session itself was not bad, they gave me a sleepy shot so I was only awake for about 30 minutes of the 4 hours.

    I only have 5 more sessions to go and so far so good I guess, had a great deal of nausea, fatigue, sores in my mouth, bone pain from the neuprogen.....all of what I gather are the norms.

    But all in all I was surprised that I did not feel worse.

    Next Session is next Thurs so will continue to take it all just one day at a time.

    Robyn
  • bunnie
    bunnie Member Posts: 233
    #7
    Hi.How many treatments do you have too have?personal i just had them do a iv every time you get use too the meedle thing after awhile.My doc tried talking me into a port but i opted not to even though i hate needles with a passion.Let us know what you decide.bunnie
  • goldies
    goldies Member Posts: 3
    #8
    Hi rcknrob...Did anybody help you with any answers?? I'm new here...Don't know what a Port is...goldies
  • goldies
    goldies Member Posts: 3
    #9
    bunnie said:

    Hi.How many treatments do you have too have?personal i just had them do a iv every time you get use too the meedle thing after awhile.My doc tried talking me into a port but i opted not to even though i hate needles with a passion.Let us know what you decide.bunnie

    Whoops, I do see your getting your answers...
    Good luck & Hang in there...
  • rcknrob
    rcknrob Member Posts: 9
    #10
    goldies said:

    Hi rcknrob...Did anybody help you with any answers?? I'm new here...Don't know what a Port is...goldies

    Thanks to all for your help. I have decided to have the port removed and will go with the iv. I have 5 more sessions and feel confident that I can do that without the port.

    Robyn
  • Mosis50
    Mosis50 Member Posts: 59
    #11
    Robyn,
    I am so sorry you are having such a hard time with your port. Believe me it does get better. My surgeon put in my port when I had my mastectomy so no pain there. When I went for my first chemo and bloodwork, the nurses stuck me about 5 times trying to use the port. That was no fun and I was very upset. I had my first chemo without use of the port. They decided it had somehow flipped over and the back side was up. I had to go back and have my surgeon flip it back over and it worked better after that. I was glad for the port since they only had to stick me once each time I went in for chemo and bloodwork. It was sluggish at first but got better after the swelling went away. It is still a stick but one stick was better than two for me each time. I had my port removed in the surgeon's office after I was finished with chemo. I did feel that some but was relieved to be finished. God Bless You during your chemo and the decisions you have to make during this time. HE will give you strength. Susan
  • rcknrob
    rcknrob Member Posts: 9
    #12
    Mosis50 said:

    Robyn,
    I am so sorry you are having such a hard time with your port. Believe me it does get better. My surgeon put in my port when I had my mastectomy so no pain there. When I went for my first chemo and bloodwork, the nurses stuck me about 5 times trying to use the port. That was no fun and I was very upset. I had my first chemo without use of the port. They decided it had somehow flipped over and the back side was up. I had to go back and have my surgeon flip it back over and it worked better after that. I was glad for the port since they only had to stick me once each time I went in for chemo and bloodwork. It was sluggish at first but got better after the swelling went away. It is still a stick but one stick was better than two for me each time. I had my port removed in the surgeon's office after I was finished with chemo. I did feel that some but was relieved to be finished. God Bless You during your chemo and the decisions you have to make during this time. HE will give you strength. Susan

    Thanks Susan,

    My surgeon is going to remove the port tomorrow and I am so glad.

    God Bless You
    Robyn

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