Cheese Update

CheeseQueen57
CheeseQueen57 Member Posts: 933 Member
in Uterine/Endometrial Cancer #1

So new renal stent has also become intolerable. Nothing cuts the pain including medical marijuana. I’ve resorted to ice packs to the crotch. I’m seeing a urologist at Johns Hopkins on Thursday for a second opinion and I see my regular urologist on June 18. There’s got to be another solution. 

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Comments

  • MAbound
    MAbound Member Posts: 1,175 Member
    #2
    Upsetting

    It's very upsetting to read how a number of us are suffering from such intractable pain, whatever the cause. I feel like we are all strong women who can get through what we have to as long as there is a light at the end of the tunnel that we can reach for, but not knowing if there is an end in sight has got to make enduring so much harder. I pray that you and all the others find answers that bring you some relief so that you can get some sleep and live your lives as you are supposed to. Quality of life matters so much!!

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #3
    I'm glad you're getting a

    I'm glad you're getting a second opinion. It seems like there has to be a solution to this constant pain. I'm sorry you're hurting and I hope the new doctors have better ideas to help.

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #4
    I am so sorry, Susan!!  This

    I am so sorry, Susan!!  This is terrible - there just has to be a better way.  I wish there was something I could say or do to make it better but just know I'm here for you!  (((Susan))) <3

    Love,

    Eldri

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #5
    CQ, not all hospitals are the

    CQ, not all hospitals are the same - you are going to one of the top hospitals out there.  Johns Hopkins has done wonderful things and I hope they are the answer for you as well!

  • SF73
    SF73 Member Posts: 317 Member
    #6
    Dear CheeseQueen

    I really hope that they can find a solution for the pain you are experiencing. It is not acceptable how long you have been suffering. Best of luck in your appointments!

  • derMaus
    derMaus Member Posts: 558 Member
    edited June 2018 #7
    Oh Cheese, this must seem

    Oh Cheese, this must seem like a horrible nightmare from which you can't awaken. I'm glad you see someone so soon but hope they get this **** undercontrol. If not, tell Johns Hopkins that they will have a bunch of pissed off uterine cancer survivors camped out on their front lawn with signs saying FIX SUSAN NOW!! These doctors, every single one of them, should be profoundy ashmed of their failure to find you relief. With love always, B

  • Tamlen
    Tamlen Member Posts: 343 Member
    #8
    Can't say it better than derMaus did

    Ditto what derMaus said. I'm so sorry you're going through this so repeatedly and without relief. I really hope Johns Hopkins comes through for you.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #9
    Hard times

    So, so sorry you have not been given more relief from this...I do hope your doctors can come up with the best plan for you. You have been such a trooper in all of this. I stand with derMaus on LH lawn!

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    #10
    Too much

    Sometimes it's just all too much! I'm with DerMaus and the other ladies - Fix Susan Now!!

  • MoeKay
    MoeKay Member Posts: 495 Member
    #11
    Good Luck Tomorrow

    I hope that the urologist at Hopkins comes up with a better solution for you tomorrow.  I can't believe there is not an alternative way of addressing the problem that won't cause you to be in such pain!!   I too agree that one of these great minds must find a way to Fix Susan Now!!!! 

     

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #12
    Thinking of you today. I hope

    Thinking of you today. I hope the appointment goes well!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #13
    CheeseQueen57

    Thinking of you today as you seek relief at Johns Hopkins. Praying they have better abilities to diagnose and intervene to stop your suffering! ((Hug))

    Lori

  • Harmony09
    Harmony09 Member Posts: 79
    #14
    Thinking of you today as well

    Thinking of you today as well. Just let us know when you feel up to it...my camping gear stays packed ;)

    Fix Susan NOW!

    Sincerely,

    Stacey

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #15
    Update

    Well, I have a better understanding of what may be going on with my ureter problem but there may not be a solution other than perpetual stents. The Hopkins doc explained that although the blockage may be caused by scar tissue caused by either surgery or radiation, there also may be cancer there because of the proximity of my reoccurence in the peritoneal area. The only way to know that would be to biopsy the area which comes with its own risks. If cancer is in the area, surgery is not possible. If cancer is not in the area, surgery is possible but not without risk. Although my cancer seems to be in remission, I’m sure there’s a few little seeds in the area.  The ureter is very delicate and there’s all kind of bad things that can happen with surgery. Although surgery can most likely be done laproscopiically, there’s a chance it could lead to open surgery which is a nasty lateral incision. He didn’t have a lot of solutions for stent pain. He says it’s a very frustrating area. They can try different stents but there’s no good solution. He said I probably have more bleeding because of the Eliquis. I asked about how harmful the perpetual inflammation of the bladder is and he admitted it’s not good and over time could cause bladder cancer. So that is my situation. He doesn’t really do this types of surgery. There is a group affiliated with NYU that appears to deal with this issue. I may contact them for an opinion. Conveniently my son is moving to NYC in the next month so I could stay with him. But I’m not sure that’s the way to go. I have an appointment with my regular urologist on June 18.  I’m glad I went to Hopkins. The doc was very nice and gave a good explanation which unfortunately I had yet to get from my regular urologist. 

    Thanks for all your concern and support. 

  • gbazyl
    gbazyl Member Posts: 23
    #16
    Thinking of you

    and hope that whatever you choose to do helps....

  • evolo58
    evolo58 Member Posts: 293 Member
    #17
    I so hate when it's an either

    I so hate when it's an either/or situation, and one is fixable and the other far more complicated. You would think somehow there would be a better way to tell. It's frustrating. I guess it can frustrate doctors as well. What should they tell their patients? Do they risk giving them false hope, or alarming them for no reason?

    If surgery is not possible, are there any alternatives? Any neoadjuvant treatmtents?

    I hope the group at NYU can give you far more satisfactory answers and far more promising solutions, if that's what you choose. Or if anyone else can.

  • Armywife
    Armywife Member Posts: 451 Member
    #18
    Just saw this

    You've been through so much and you keep going with such pain.  I'm in awe of you.  Praying for relief, and fast!

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    edited June 2018 #19
    Cheese, my thoughts and prayers are with you!

    I am hoping that you finally find some relief from your pain. I can’t  even imagine what you are going through. I can say that we- all the women who post on this Board- are here for you and support you with your treatment decisions. 

    Hugs and Warm Wishes,

    Cathy

  • Soup52
    Soup52 Member Posts: 908 Member
    #20
    Cheese I’m so sorry for all

    Cheese I’m so sorry for all you are going through!

  • pato58
    pato58 Member Posts: 120 Member
    edited June 2018 #21
    Nice to meet you Cheese

    I am so sorry for how you feelFrown
    I read that you are from an area near me. I live in South Jersey and I am going to have my hysterectomy at Cooper Md Anderson Cancer center.
    Diagnosis by D&C is Endometrioid adenocarcinoma grade 2
    I hope you find relief to your pain :)

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