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  • #1

    Reposted for new member JanemomJane

    JanemomJane
    IC Friend


    Join Date: Apr 2007
    Posts: 1 Mom not yet diagnosed

    --------------------------------------------------------------------------------

    Hi all,
    I am new. My mom's dr. thinks she has IC and I am afraid she has bladder cancer instead. What is the difference? Did any of your dr.s test you for bladder cancer? I made her get a 2nd opinion because it all started back in November when she drove herself to the hospital with a kidney stone. Ever since November she has had on and off UTI's and pain and hematuria. However in my family my dad died from Urothelial cancer with the exact same symptoms. Dr.s kept on telling him he was having repeated UTI's with blood in the urine. 2 and 1/2 years went by and he was diagnosed with Metastatic cancer 4 months after my son's diagnosis with autism. I am so scared my mom has cancer instead of IC. Can any of you tell me some of the classic signs of IC? My mom is 71. Is it normal to get IC this late? Just yesterday she has been on microbid for 4 days and she had blood in her urine. With IC would the blood go away eventhough you are on Microbid? She also has or had really severe yeast infections and is being treated for that. She also had a lot of intestinal difficulties too, bloated intestines and diahrrea 6 times a dayprobably due to antibiotics. The dr.s seems to think that she has permeability between the intestines and the kidneys and that is what is creating the UTI's. I just wish I could figure this out and not be so upset and keep thinking it might be cancer. Another red flag for me is the fact that the Dr. (Urologist) says she is an enigma to him. Can anyone shed some light on my mom's situation? He did biopsy yesterday what appeared to be pus and postules in her baldder from what the cytoscope check. But he said that there weren't any pus or postules there before in the previous visits she has had. Can Kidney stones provoke IC? or vice versa?

    Thanks,
    JanemomJane
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.     [3MG]

    Anyone who says something is foolproof hasn't met a determined fool
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  • #2
    Nobody knows exactly what causes interstitial cystitis. I do know that ruling out cancer is almost always a part of making an IC diagnosis. When I had my first hydrodistention, which diagnosed my IC, biopsies were taken to rule out cancer. My father had bladder cancer so that was very important to me.

    I understand how worried you must be.

    Sending warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.     [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment

    • #3
      yes i also was worried about bladder cancer,my father had bladder cancer too,and i had just had a leep procedure done a few months before all my problems got worse,to remove moderate displaysia.so i kept thinking cancer too.but when they do the hydrodistention,they do the biopsy to rule out cancer,so they will find out.i understand all your worrying about your mom,i'm the same way.its scary when its your parents isn't it?i hope everything turns out ok for your mom.if the haven't done the hydro,you should talk to your mom,and her docs,to see if they will do it.good luck,and my prayers are with you and your mom.

      Comment

      • #4
        to the ICN.

        I was told i had bladder cancer at first and went for biopsies and it was IC. I know how scared cancer sounds. I also have blood in my urine almost all the time. sending prayers to youand your mom.

        Comment

        • #5
          Your mom's cystoscope and biopsies should have ruled out cancer. If your doctor is saying she is an "enigma," it is more likely to be IC. A lot of doctors don't know much about the disease, how it is diagnosed, or how it is treated, so they are at a loss when faced with a case of it.

          If you like, get a second opinion -- but perhaps find a doctor who specializes in IC. There are doctor listings on this site, but you can also call various urology practices and ask if a doctor there treats IC patients.
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment

          • #6
            enigma

            I just wanted to chime in and vote for a second opinion- immediately. Even just another doc that is under your insurance or whatever, if you can't find an IC specialist. A doc that says someone is an "enigma" is being lazy in my opinion. You're not an enigma- you're a patient with symptoms. Done. Find a new doctor and get a fresh look.
            I had major surgery for a genetic rectal prolapse in Aug.05 which I believe links directly to my new Dx of....PFD! March.08. I'm working with a great PT named Zelda- I think the world of her I have the same feelings for the team at the Kaiser Center for Pelvic Pain in SF- amazing people.

            I've had a cystoscopy, 2 cat scans, falied a potassium test and have had about 50 clean UA's.
            This is my hot water bottle- the fish. I love him!
            I'm also a big fan of my "Electric Fish," the TENS unit. Very helpful in a flare!

            **I'm getting Botox next week!**
            I take:
            Oxybutynin 10mg
            Elmiron 100mg 3x day
            Gabapentin 300mg 3x day
            Antihistamine, CystaQ, Bc, & Thyroid (125mcg) nightly

            I've also taken:
            Detrol LA
            Oxybutynin patch and lower dose pill
            Amitryptiline and Nortryptiline

            Comment

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