I'm so very frustrated

csgossard
csgossard Member Posts: 13
edited March 2014 in Breast Cancer #1
Hi everyone...been gone a long time on a vac that turned to a nightmare. Just got back home last weekend. I got another bad infection in the lumpectomy site and they opened it up and let it heal from the inside out. Didn't have a pain killer one that would stop that pain when they changed the dressing...poor, pittful me, huh? I'm sure a lot of you have been through a lot worse. Sorry about that. Anyway the last operation was in May and I'm still taking hyperbaric treatments (another 20) so it's not healed up yet. I've had a great wound care doctor do his best to "fix" it, infectious diease doctors that tried to help, surgeons for the hyperbaric treatments, infusions twice daily, 7 days a week for 8 weeks...and Nothing has helped get rid of the pains. All the doctors keep telling me it's from radiation damage. No one will listen to me that I'm still having a lot of shooting pains in that breast and not from the site either. They just say they don't know...it must be damage from radiation...over and over again.

Went to new oconologist yesterday and he was very nice but didn't have an answer either. I even asked again about IBC but he didn't think I had that. He's sending me to a female breast surgeon end of this month..maybe she can help.

I'm so frustrated. I have pain the majority of the time. The stabbing pains sometimes put me on my knees. What is left for me to do? I just feel like my hands are tied.

Have any of you experienced this before and if so, did it get better?

Any answers would be greatly appreciated.

Thanks... Connie

Comments

  • shirlann
    shirlann Member Posts: 229
    #2
    Hi, Connie, dear sister, yes, I know of at least one other gal on the AOL site that is completely incapacitated with pain. The docs can give her no answers either. She is on a continuous pain drip. She has been checked for everything 8 ways from Sunday but they cannot find anything wrong with her at all. I would get myself to Dana Farber, M.D. Anderson, UCLA, Sloan-Kettering, etc. and see if better medical minds have some ideas. The good news is, you are definitely not alone, this other gal is in exactly the same boat. If you can get on AOL, you can find her, I am sure. Don't give up, if all else fails, go to a pain clinic. Just keep on trucking dear. Post often, we love you, gentle hugs, Shirlann
  • cruf
    cruf Member Posts: 908
    #3
    Hi Connie! I'm so sorry you have to experience so much pain. Have they ever suggested putting you on Neurontin for a short time to see if it helps? It is a medication for neuropathic pain. You may be having nerve pain from the surgery and this seems to work well!Just a suggestion. I hope you feel better real soon. Keep us informed. HUGS!! Cathy Neurontin is also supposed to help hot flashes too if you have them!
  • csgossard
    csgossard Member Posts: 13
    #4
    shirlann said:

    Hi, Connie, dear sister, yes, I know of at least one other gal on the AOL site that is completely incapacitated with pain. The docs can give her no answers either. She is on a continuous pain drip. She has been checked for everything 8 ways from Sunday but they cannot find anything wrong with her at all. I would get myself to Dana Farber, M.D. Anderson, UCLA, Sloan-Kettering, etc. and see if better medical minds have some ideas. The good news is, you are definitely not alone, this other gal is in exactly the same boat. If you can get on AOL, you can find her, I am sure. Don't give up, if all else fails, go to a pain clinic. Just keep on trucking dear. Post often, we love you, gentle hugs, Shirlann

    Thanks
    Thanks Shirlann, I appreciate your words of direction and comfort. I will keep trying until someone gives me an anwer.
  • csgossard
    csgossard Member Posts: 13
    #5
    cruf said:

    Hi Connie! I'm so sorry you have to experience so much pain. Have they ever suggested putting you on Neurontin for a short time to see if it helps? It is a medication for neuropathic pain. You may be having nerve pain from the surgery and this seems to work well!Just a suggestion. I hope you feel better real soon. Keep us informed. HUGS!! Cathy Neurontin is also supposed to help hot flashes too if you have them!

    Thanks for the ideas for neuropathic pain. I'll ask my doctors about it next visit.
    It's definately worth checking out. Thanks
  • nasa2537
    nasa2537 Member Posts: 311
    #6
    Hi Connie....so sorry you're going through so much. I hope the new docs can find you some answers. Don't stop going to new doctors until you are satisfied. I didn't have any wound problems, but had the shooting pains for...oh, about 6 months after radiation, but then they stopped. Best wishes to you, and lots of hugs and prayers. Cyndi
  • csgossard
    csgossard Member Posts: 13
    #7
    nasa2537 said:

    Hi Connie....so sorry you're going through so much. I hope the new docs can find you some answers. Don't stop going to new doctors until you are satisfied. I didn't have any wound problems, but had the shooting pains for...oh, about 6 months after radiation, but then they stopped. Best wishes to you, and lots of hugs and prayers. Cyndi

    Thanks Cyndi. I will keep going. Maybe in time the pain will quit but I'm going on a year now and it seems to be worse. But I see a breast surgeon next after next and hopefully she may have some answers. Thanks for your hugs and prayers.

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