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  • Prostate Cancer and IC

    I was diagnosed with IC in 1999 and now biopsies have shown cancer cells in one quarter of my prostate. Local urologist who has been treating me for seven years says radiation is not an option because of risk of making IC much worse. He proposes surgery in which both prostate and bladder would be removed, leaving me with bag or neobladder made from intestines.

    Second opinion doctor at Lahey Clinic (near Boston)has proposed separate treatment of bladder and prostate problems and has made appointments with specialists in each area. Radiation guy has proposed radiation seeds. Will see IC doctor on 10/22.

    Does anyone out there share my combination of problems? If so, how are you treating it?

    Ken

  • #2
    Hi Ken,

    Sorry about your problems friend, im not sure i have ic, but i have weird symptoms.Since august i have been having urgency feelings and frequency lately.My uro did a cystoscopy and i asked him if the test checked for ic, he said yes and i didnt have it.But it was under my understanding it is only known through hydro distention.Which leaves me confused, how did your problems come about Ken? What symptoms and what was your experience like?

    Comment


    • #3
      Ken, I'm so sorry you're having to face more problems. And I'm very glad you are going for second opinions before making your decision. Please let me know what you ultimately decide.

      rko: An office cystoscopy does not usually diagnose IC --- my bladder appeared to be completely healthy and normal when I had my first office cysto. When the hydro was done, the IC diagnosis was made.

      Sending healing thoughts to both of you,
      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/

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      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


      • #4
        rko,

        My IC was confirmed by hydro-distension, although my local uro first suspected it by seeing a Hunner's ulcer in my bladder when he did a cystoscopy. If you are naywhere near Boston I strongly recommend the Lahey Clinic. They have TWO IC specialists, Dr. John J. Smith III and Dr. John F. Bresette.

        Thanks for the kind thoughts Donna. I have been away from the IC Network for a long time and now am glad to be back. Local uro had me all enthused about an IC cure by bladder removal, but, after checking the net, I find that that may be a cure worse than the disease. Will keep in touch.

        Ken

        Comment


        • #5
          grouphug grouphug grouphug Ken, I will be praying for you.
          Hang in there , There is hope.
          There is hope. Prayer works.

          Love, Debbie

          Comment


          • #6
            Ken,
            Sorry for your problems.
            As far as treatments go you will find pros and cons to all of them. That is with bladder removal too. I have read several on here who would not take back their IC bladders for anything. Even will the trials and tribulations after the surgery. I think you are wise getting as many opionions as you need to feel comfortable with whatever decision you make. Good Luck.

            Jolene
            Jolene

            "Life is what happens when you are making other plans" John Lennon

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            "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


            • #7
              I agree with getting the different opinions, and that are pros and cons both ways. I had my colin removed and had a bag for a year, although I would have died otherwise, I hated the bag, but I think mostly because I was a 13 year old kid, hating to dress around the bag, and hating the times it leaked or broke. Perminant bags have less problems like that, and as an adult, I think dressing around it would be much easier. (or minor adjustment) I am happier with my Pouch now, even though it is inflammed. I hope these thoughts can help you. i know someday I may have to have a bag outside of my body again if I get bad enough, or something goes wrong in a future surgury, and I am not too uncomfortable with that possibility. Sorry you have to go through so much. Best of luck to you, andGod Bless you.
              Faith, Hope, and Love,
              Katrina


              I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

              IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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              • #8
                Awwww, I'll pray for you. grouphug grouphug grouphug

                Melissa
                "Life is 10% what happens to you and 90% how you react to it"

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                • #9
                  Thank you all for your prayers and kind thoughts.

                  Final decision at Lahey Clinic is that the use of radiation seeds will not adversely affect my bladder. I have had one hormone shot to start shrinking my prostate for the seed procedure and have another shot and an ultrasound scheduled for Dec. 17. The seed implantation into my prostate will probably be in February. It is an out-patient procedure and is certainly less drastic than the local proposal of prostate and bladder removal.

                  More good news is that new meds prescribed at Lahey have reduced my IC symptoms. My frequency is down by about 40% and I rarely have any pain. Three meds were prescribed: Urised, Hydroxyz, and Macrobid. Presently I am taking only the first two to see if they are the effective ones. Looks pretty good so far.

                  Ken

                  Comment


                  • #10
                    Thank you for letting us know. I hope you continue to feel good while you are pursuing your treatments.

                    Warm healing thoughts,
                    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


                    • #11
                      Ken,

                      Been away from this list a long time. I also ended up with BOTH IC and prostate cancer. I opted for surgery. Went fine. IC is kind of manageable now.

                      Let me know how the seeding turned out.

                      Jim

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