Mediport pain?

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jamjar62
jamjar62 Member Posts: 135
edited March 2014 in Breast Cancer #1
Hi there...I had a mediport put in during my lumpectomy surgery. It's on my right side. I have pain in my arm and under my arm on the right side. I told my onc because I was terrified it was a bone met. He felt the nodes under my arm and told me to quit sleeping on my right side. Has anyone else experienced pain on their mediport side? My last chemo is in 2.5 weeks and my onc will do a complete exam at that time but meanwhile I worry about this pain. Thanks! Karen

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  • brooke
    brooke Member Posts: 4
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    Hi,

    I cannot speak to mediport pain. I can speak to fear of each and every pain, of which there seem to be hundreds while going through the process. I understand the difficulty, but when you get scared, try three deep breaths. The oxygen will change your thought processes and you can let the fear go. By the way, it too takes practice. Then when you feel a pain, write it down or leave a message with your doctor. Chances are, it is just a pain.

    Brooke
    Breast Cancer Survivor, Stage IIB
    Lumpectomy, Masectomy, Tram-flap, 6 mo. Chemo
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
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    My medport was implanted 3/13 and I have had issues with it now and then. My suggestion would be to call the doctor who implanted the port and explain the situation. Mine was implanted by radiology. Oncs know onc; radiologists know ports.
  • ksfc
    ksfc Member Posts: 251
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    Karen,

    Some ports can be a royal pain. My left arm and shoulder were sore for quite awhile after I got it. Now, I hardly notice it except once in awhile when it pinches me. Hopefully, I'll get it out this summer. What the surgeon told me to watch for was any swelling in the arm on the port side, as well as distended veins because that could indicate a clot in the port or vein. I hope your has worked well for chemo. Mine was very positional and gave the chemo nurses a lot of trouble. I just about had to stand on my head and spin around to get it to work.
    Take care - Diane
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
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    Congrats on the upcoming last chemo, hopefully port comes out then. I've had one for 21 months now and yes it hurts if I sleep on it wrong or get it in a crimped position. Pain is not so much at port but along port line up to my collarbone. I agree though w/ Dee, ask the doc who put it in. Chances are it is the port.
    Have they done any other workup? Tumor markers, bone scan, CT scan of lungs...? if not you can always request these or at least an x-ray of chest and arm, if for no other reason than to ease your mind. Trust me, be bold and stand up for yourself, you are your own best advocate!
    God bless. hummingbyrd
  • jamjar62
    jamjar62 Member Posts: 135
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    Congrats on the upcoming last chemo, hopefully port comes out then. I've had one for 21 months now and yes it hurts if I sleep on it wrong or get it in a crimped position. Pain is not so much at port but along port line up to my collarbone. I agree though w/ Dee, ask the doc who put it in. Chances are it is the port.
    Have they done any other workup? Tumor markers, bone scan, CT scan of lungs...? if not you can always request these or at least an x-ray of chest and arm, if for no other reason than to ease your mind. Trust me, be bold and stand up for yourself, you are your own best advocate!
    God bless. hummingbyrd

    I have not had a bone scan but my CA27/29 was negative (less than 8) and when I asked about an x-ray of my arm, my onc said it wasn't necessary. I didn't push it because he was so firm about it. Maybe I should have? Karen
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
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    jamjar62 said:

    I have not had a bone scan but my CA27/29 was negative (less than 8) and when I asked about an x-ray of my arm, my onc said it wasn't necessary. I didn't push it because he was so firm about it. Maybe I should have? Karen

    Congrats again on the normal tumor marker result! Personal opinion, but if I feel strongly about something needing to be done I ?? my doc till he does it. Nothing like asking an MD for a test, he refuses and then something be there. Not an advocate at all for law suits, but hey even I know that one wouldn't look good.
    "Tell me Dr. how long did your patient complain of bone pain? And she requested an x-ray or some type of work up? And you refused for how many months?"
    Point is, it's your body and you know when something is just not right. Kinda like my car, I know when its not running right, so I take it to the mechanic, its his job to figure out the problem...not to tell me 'well, I don't see any need to look under the hood'. LOL Just teasing!
    But you know it is YOUR body, YOUR health and YOUR responsibility to push back if you need some attention. Docs can be egotistical, most don't like being questioned, they can be hostile AND they can be wrong. So listen to your body!
    Case in point, May 2001 I had x-ray of chest for radiation of breast (to position the machine). There was a 'bone cyst' in my right arm that they saw on chest x-ray. Markers start going up in August 2001, Onc orders all kinds of scans except bone scan, because I don't have any bone pain...I call back and requested the bone scan, breast cancer typically has mets to brain, bone, liver and lung. He says 'no, you don't have pain'. I said, 'tell him I'm adament about it, I want the bone scan'. Sounds like I stomped my foot after that eh? Bit of a temper tantrum? LOL
    Anyway he says OK and bingo, there it was, bone met in right arm, missed the diagnosis in May. Would have been missed in August too had I not insisted because, I had a malignancy in the other breast also, and they would have incorrectly assumed that's what made the markers go up. Needless to say I strongly feel patients should speak up for themselves!
    Here by the grace of God, hummingbyrd.
    May God bless you also Karen.
  • rizzo15
    rizzo15 Member Posts: 153 Member
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    ksfc said:

    Karen,

    Some ports can be a royal pain. My left arm and shoulder were sore for quite awhile after I got it. Now, I hardly notice it except once in awhile when it pinches me. Hopefully, I'll get it out this summer. What the surgeon told me to watch for was any swelling in the arm on the port side, as well as distended veins because that could indicate a clot in the port or vein. I hope your has worked well for chemo. Mine was very positional and gave the chemo nurses a lot of trouble. I just about had to stand on my head and spin around to get it to work.
    Take care - Diane

    I agree with ksfc. I've had my port since early November and it can still pinch me pretty good, especially during the night when I roll around while I'm sleeping. But every chemo session, the person who installs the needle always comments on what a good job the surgeon did. Their criteria is that the connection stays good and clot-free. I always wonder if the pain is from the port being short as the written description after surgery was a pediatric port. I'm 5'2", so I was thinking maybe they used a shorter port. Or...maybe all of them are called pediatric ports and there is no such thing as an adult port.
  • iabarbosa
    iabarbosa Member Posts: 2
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    rizzo15 said:

    I agree with ksfc. I've had my port since early November and it can still pinch me pretty good, especially during the night when I roll around while I'm sleeping. But every chemo session, the person who installs the needle always comments on what a good job the surgeon did. Their criteria is that the connection stays good and clot-free. I always wonder if the pain is from the port being short as the written description after surgery was a pediatric port. I'm 5'2", so I was thinking maybe they used a shorter port. Or...maybe all of them are called pediatric ports and there is no such thing as an adult port.

    Mediport Pain

    This is the only place I have found posts of issues like the ones I am having with my port.  These are pretty old.

    anything recent?

    Mine feels like it pinches when I move and i have chest pain around it.  the surgeon did not think it was an issue.  The dye study did not show any leaks but it still hurts and I never want them to use it.

    no one seems to have any solutions.  Help!

     

  • GlowMore
    GlowMore Member Posts: 789 Member
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    iabarbosa said:

    Mediport Pain

    This is the only place I have found posts of issues like the ones I am having with my port.  These are pretty old.

    anything recent?

    Mine feels like it pinches when I move and i have chest pain around it.  the surgeon did not think it was an issue.  The dye study did not show any leaks but it still hurts and I never want them to use it.

    no one seems to have any solutions.  Help!

     

    Hi iabarbosa....

    Noticed your concern about your port on this old Post from 2003......looks like jamjar hasn't been on since 2013 in Feb and  Hummingbird hasn't been back since August of 2008....   You can click their names and it will take you to their home pages and show you when they were last on here.  I notice you have not filled out your page yet.......I didn't fill mine in either for about TEN YEARS***  :)    About your port....I'm really sorry it is hurting you and don't really understand your surgeon saying it is not an issue...because if it hurts you...then it is an issue.  I would go talk to him AGAIN.   I'm not really understanding you not wanting the nurses to use the port though...are you talking about drawing blood or are you talking about getting chemo thru the port?   I had a port in my right chest just under my right collar bone from May 2002 until about 2008 or 2009...I'd have to go look at my records to remember the exact date (I try to forget all that stuff as much as possible)  but anyway...mine was done by a Surgeon in a Hospital both for placing and for removing.  They didn't want to remove it but I wanted it out and my Onc finally agreed...  I remember I did not sleep on my right side a lot because of it......  I hope you can get some help with this....you have enough to worry about usually with all the rest of it let alone more pain over a Port.   Love and Hugs , Glo