I know about not having a major center as i live in a major city and had to travel for my surgery. I contacted a gal who was on this forum at one time who also had a cystectomy because of IC. I'm hoping she will get in touch with you.
Another friend of mine suffered for years with it and found a homeopathic remedy that worked for her and she is symptom free now. She said the couple of things she has to avoid is coffee and anything with vinegar.
I wish they knew more about IC but because it only affects mostly women..90%..of course its not studied!!
Hi Pat - yes the kidney disease is a worry and my nephrologist says if I have the bladder removed I may have increased problems with infection. My last GFR was 28 so I am edging closer to the time when he will have the vascular surgon implant a port. He likes to do it before it is needed to give it time to heal. It is one of the reasons I am leaning towards the cystectomy as if I ever did need chemo from this I don't think my body would be able to handle it. You know what I am is a walking poster child for what happens when you smoke and don't take care of your diabetes. I now am 7 years a non-smoker and take good care of the diabetes - just a little too late on all fronts. One of my girls says I should have the surgery if for no other reason then to get rid of the pain, the other girls and my son say that they will support me whatever I decide. Well Friday I go to the cardiologist so will wait and see what he has to say. I do not live near any major oncology centers and probably Emory would be the best center but I have not had good results with Emory doctors in the past and feel they are highly overrated. If I were to go to the VA they would be using Emory doctors, however I think this uro/oncologist I went to on Tuesday is very experienced and I liked him. Living so close to a major city (Atlanta) you would think there would be a major cancer center - seems that is not the case. Well I am rambling so will go for now, thanks for your concern and help. Bobbie
Hi Bobby....gosh i'm as concerned about your stage 4 kidney disease as i am over your bladder. What does your nephrologist say? A person with Stage 4 CKD has advanced kidney damage with a severe decrease in the GFR to 15-30 ml/min. It is likely someone with Stage 4 CKD will need dialysis or a kidney transplant in the near future.
As kidney function declines waste products build up in the blood causing a condition known as “uremia.” In Stage 4 a person is likely to develop complications of kidney disease such as high blood pressure, anemia (a shortage of red blood cells), bone disease, heart disease and other cardiovascular diseases.
And some of this build up is undoubtedly having an effect on your IC i would think if not your heart already.
I'm not sure where you are located but honestly i would, if it were me, get another opinion at a top Urological Center like The Cleveland Clinic or Johns Hopkins if its possible. You can even do it on line at Cleveland...they'll guide you through the second opinion and what info they need to have and then the top uros and a multidisaplinary team will give you good information. I'm not sure its covered by insurance but its worth the $ to be sure.
He recommends a cystectomy based on the following: 1 - I have years and years of severe bladder pain from IC, acute and chronic cystitis etc. 2 - I require a stent in the right kidney which has to be changed every 3-4 months. 3 - the tumor is at east a T1 and is high grade. He says the surgery would take care of the pain, I would no longer require a stent and the cancer would be gone. He wants me to think about it and to consult with my cardiologist as I have had a previous MI and would need to be cleared for such extensive surgery. Honest to God one minute I am for it and the next I am not - I take so much pain meds now that I would love to be without the pain and the meds. Since I also have stage 4 kidney disease it would seem that it would also help that I would not have to have surgery every 3-4 months. Because I have extensive scaring he says I would have to "wear a bag" and he would not be able to do one of the new procedures. My other option is to have him go in and remove all the cancer and do the BCG treatments. He says I would still need the stents and would still have the pain. There have been times when the pain was so bad and un relenting that I begged my uro to take my bladder out. Now it seems that maybe I should and to be honest at this point I do not know what I am going to do - but I did go ahead and make an apointment with my cardiologist for Friday. In the meantime I guess I will just see-saw back and forth and try to figure out what is best for me. Bobbie
PS You guys and gals are the BEST.