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Pain w/Port?

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nns121317
nns121317 Member Posts: 111

I got my port in November. It's never been comfortable, I don't have much tissue around it and any time it's bumped or manipulated, I can feel it. It's been used for four rounds of AC, and seven rounds of Taxol. The last couple rounds of Taxol have been painful - the port area beneath the skin is burning, my arm feels like someone punched me, my neck is stiff on the port side. The onco nurse administering my chemo didn't seem concerned, but I'm wondering if I should follow up with my MO. Has anybody had something similar?

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  • mle42
    mle42 Member Posts: 124
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    My port was also never comfortable, it bothered me and was painful to the touch from the time it went in until the day it came out - which was immediately after chemo, just as soon as my MO ok'd it! That being said, while it didn't get better the longer it was in, it also never got WORSE. If your discomfort or pain is getting worse, and especially if it is radiating down your arm or up your neck in a new way, definitely flag it to your doctor. I'm sure they will want to make sure there's no infection or clots or other funny business going on.

  • cowgirl13
    cowgirl13 Member Posts: 774
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    nns, definitely see your oncologist as soon as you can or perhaps you can speak with the surgeon who installed the port. I would do this right away. Personally, I hated my port, it was uncomfortable but I never had symptms such as you are having. Keep us posted.

  • gb2115
    gb2115 Member Posts: 553
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    I had stinging and sharp pain with mine. The surgeon said it's because I have a thin chest and there wasn't much tissue to cushion. I'm definitely more comfortable with it being out. Hang in there!

  • serendipity09
    serendipity09 Member Posts: 769
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    It was quite bothersome for me as well as I have thin skin, the MO and the surgeon told me it was normal. Mine actually bruised and stayed that way after I finished chemo. I had it removed last July and now the scar hurts/itches and I developed scar tissue, which the PS will fix.

    I hope it gets better for you.

  • norcals
    norcals Member Posts: 206
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    NNS,

    The port was uncomfortable for me during all of my IV chemo. During taxol, I started having pain around my neck on the port side. I told my MO and she had me checked out with ultrasound. She was worried that I had a blood clot. The US was clear, so we never knew what caused the pain. After chemo, the port was less painful. I have kept the port in for almost 3 years. It is less uncomfortable, but I still notice it when I sleep. The MO should be notified of the pain you’re experiencing so that the appropriate tests can be performed

  • LuvPups0611
    LuvPups0611 Member Posts: 5
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    does the pain ever go away when you sleep? I cannot sleep on my port side which is my favored side. It’s so uncomfortable.

  • lw422
    lw422 Member Posts: 1,399
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    LuvPups--each of us is different, so it's hard to say. For me, the port was always uncomfortable though after it healed it wasn't truly "painful," just annoying. How long have you had your port? Is it healed now?

  • moth
    moth Member Posts: 3,293
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    luvpups, how long since you had your port inserted?


  • elderberry
    elderberry Member Posts: 1,064
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    My port bothers me on occasion (a vague ache or itch) , otherwise I don't really notice it physically. My cat tends to stomp on it but that is another issue. I am thin so it really sticks out. Still, I am so glad to have it. I don't think I would have any veins left after three years of once a month infusions. I had to switch wearing my cross over purse to my left shoulder as the strap and weight of the purse irritated the port. Passenger car seat belts can be a problem too.

    I would get it checked out if it is causing burning sensations and other symptoms that are more than minor discomfort.

  • melbo
    melbo Member Posts: 266
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    I didn’t have general pain with my port, and I mostly didn’t notice it. However, I woke up one day feeling stiff and sore in my shoulder and neck area on my port side. I assumed I slept on it funny, but it got worse throughout the day, and by the evening I realized my whole neck/collarbone/chest area was swollen. It turned out to be a blood clot in my jugular, which was really scary. They put me on blood thinners and removed the port even though I still had 12 infusions of herceptin and Perjeta left to go.

  • gb2115
    gb2115 Member Posts: 553
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    I was never able to sleep on the port side...I can now that the port was removed. I had pain all along with my port. Now my port scar hurts a little, but I can sleep on it ok.

  • LuvPups0611
    LuvPups0611 Member Posts: 5
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    It was placed on March 18th so it hasn’t even been two weeks, really hoping it gets better sleeping is so hard with it.

  • moth
    moth Member Posts: 3,293
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    oh that is still fresh luvpups.

    I could sleep on that side right away but I did notice it for the first few weeks - I remember having to get in a certain position to get comfy on that side. I used several pillows to prop the right amount. I've had my port for >18 months & I do not notice it anymore.

    hope it gets easier for you!

  • LuvPups0611
    LuvPups0611 Member Posts: 5
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    ugh I feel defeated because I’m HER2 + I have to have this beast in for so long.

  • oldladyblue
    oldladyblue Member Posts: 302
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    I am wondering when a port is usually taken out after chemotherapy is complete? I can't get a straight answer from my doctor, she just says we usually leave it in "awhile" every time I ask her. I finished TC chemo in December 2021 and am complete with all cancer treatments except for Anastrozole for the next 5 years. The port bothered me terribly (but worked OK) every time it was "jiggled". Now it doesn't bother me anymore, but I'm not sure why it can't be removed, or when it is usually to be removed. If you had a port for chemo and are done, when was your port removed?

  • Gonetruckin
    Gonetruckin Member Posts: 9
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    my MO prompted me to schedule removal incessantly, even as I was finishing chemo. I kept telling her I wanted to wait awhile to make sure it wouldn’t be needed again. When it was put in I had an infection in one incision and the other one tried to separate because I overdid it too early. The surgeon had been very flippant about the port, said it was no big deal at all. So I sure want to avoid doing it again. After my six month mammogram looked good, I went over scenarios with the MO and it seemed unlikely I would need it again, surgery, medicine, radiation being more likely if I have a recurrence. So I said let’s get it out…bugged them twice to get it scheduled and finally it’s coming out next week, a month later! I started the Livestrong program at the YMCA last week, was hoping to be healed by then. Of course they told me having it removed is no big deal….fingers crossed they are right this time

  • oldladyblue
    oldladyblue Member Posts: 302
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    gonetruckin thanks for your reply. Funny how different doctors recommend different things. I guess I can be patient and wait for my 6 month mammo and consult. Good luck with getting yours out! I hope it does go easily. I should start some kind of exercise program, I am not doing anything but "normal" life in my yard a few times a week. There is always yardwork.