Nerve Pain from portacath (removed 8 years ago!)

CJLMomma
CJLMomma Member Posts: 3
edited January 2020 in General Cancer
My 14 year old daughter has been cancer free for 8 years now. About every 3 months she has massive nerve pain where her portacath was located in her chest. It hurts and bothers her so much that she doesn't sleep much at all for the entire week. We are wondering if there is anyone else who has dealt with this. Not sure if it has something to do with her hormones? Wearing a bra and all clothing makes it worse. Cannot put any pressure on it at all. No heat, ice, massage, Ibuprofen, or Steroids help at all. Please help!

Comments

  • GregP_WN
    GregP_WN Member Posts: 742
    edited January 2020
    That's unusual. Most people have them put in and taken out without any issues at all. I've had two, the first one stopped working. I didn't have any long term pain at all. Has any of her doctors given an opinion about what is causing it?
  • CJLMomma
    CJLMomma Member Posts: 3
    edited January 2020
    We put a call in to her Oncologist to discuss as she said she has heard the same thing from other females. Options are steroid shots on the spot (ya right...more needles there?!?!?!) Or another surgery from a plastic surgeon to deal with the nerves in that area. Being that my daughter is only 14 1/2 I'm worried for her future breast growth and pain during childbearing years.
    Thank you for your thoughts.
  • KB2013
    KB2013 Member Posts: 62
    edited January 2020
    I wouldn’t fret about the distant future right now. I have soreness with mine and chemo nurse tells me that some patients have nerve involvement, a little scar tissue is cause of mine as I’ve had two. Mine aches when it is accessed for blood draws but, nothing like your daughter’s trouble; onc, plastic surgeon, ob gyn...someone can find an answer for her. Best wishes!
  • po18guy
    po18guy Member Posts: 329
    edited January 2020
    One less serious possibility: did that cath have a dacron cuff or collar to reduce infection? If so, a certain percentage of them remain in the body when the line is pulled. Over time, they can move around as the body tries to expel them. Nerve pain can result. I just had an ultrasound for a lump on my chest, only to find out that it is a dacron cuff working its way out. OK for now, but I may have to have it removed in the future.
  • meyati
    meyati Member Posts: 308
    edited January 2020
    She could have Reflexive Sympathetic Dystrophy. That can be fairly constant with flare ups, or it comes and goes. Talk to her doctor and ask this specific question---A person can fall and get it. A person can have surgery and get it. A person can lose a limb and have RSD. nerve blocks helped me. If they hadn't worked, I was going to commit suicide. Also Gabapentin helps too. Mine is in my chest. Good luck. Also it can get progressively worse-longer and more painful episodes. It can't hurt to ask the doctor- and ask for a pain clinic. I was referred to a pain clinic by the military and diagnosed there.
  • meyati
    meyati Member Posts: 308
    edited January 2020
    I'm not too happy about the surgery option as the surgery has to be repeated every few years- one of my friends had nerve surgery every 4 years. The more surgery a person has, the less effective the nerve blocks are. Surgery caused mine-breast biopsy-and I did not understand how something that caused my RSD could heal my RSD-so I got real mulish about that

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