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husband - CIS after Follicular Cystitis

5 years 1 month ago #45452 by mareewifeofgreg
Thanks sara anne, but if it was CIS from the beginning, earlier than 2009, would it not have been picked up much sooner, & if not, it more than likely would have progressed much deeper, given that it is classed as high grade with strong likelihhod of progressing if not treated? They have said FC is usually the result of untreated UTIs but he has never had a test that showed any infection, but that didnt stop them putting him on antibiotics! BCG seems to have a high failure rate & given that he has extreme difficulty holding anything in his bladder - sometimes every 10mins he has to go! - they wonder whether hsi bladder could actually tolerate the treatment. Also, every time he has a cyto - 3 so far - he goes into retention & needs a catheter for a week or so - but it is the only time he gets a full nights sleep! Poor guy, I hate seeing him like this. He`s a good man & keeps himself busy & fit - doesnt smoke (gave up 9 years ago)or drink or do drugs - has a lot of friends as he is such a likeable guy - altho way less jovial than he used to be. & now to be told this, he just doesnt understand why him? Also, he is giving up work so he can concentrate on getting well.
Unfortunately, he is under our public health system which means he probably doesnt get the same attention he would if he was private. He did go private for the first few years but after spending thousands of dollars, he decided enough. I`m wondering now if he should go back as private. He is going to see another uro next week, just to get a second opinion before rushing off on drastic action. Altho, with our public system here, there isnt a lot of rushing at all I don`t think! We saw the consultant last Tues to be told CIS (3 weeks after teh biopsy procedure) & he says they will have an `urgent` meeting with `experts` to confirm treatmetn etc then we will hear from them. So I rang yesterday to get an idea of how long, to be told a letter was in the process of being typed up & it would be at least 2 weeks before it is done!! Sloww typer maybe?? Not sure even how many BC patients these public health docs see - could be a bit experimental for them actually!! Lol - sorry, I shouldnt laugh........
Rambling, so better go...........will keep checking in here also........

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5 years 1 month ago #45451 by sara.anne
Hi again!! I think I responded to your questions about BCG treatment above, so I will just add a little more on other issues.

Interstitial cystitis is one of those things that doctors really do not know the cause of and (in my opinion) often use it to cover things when they don't quite know what is going on!!! :laugh: AND it is many times more likely to be diagnosed in women. My suspicion is that CIS was causing all the symptoms from the beginning. I had been diagnosed with recurrent urinary tract infections for over a year (and interstitial cystitis was mentioned, but not seriously, as a possibility). Of course, no one bothered to take a culture! When I finally saw a urologist, and cultures of urine were taken...guess what? NO BACTERIA. That is when CIS was finally diagnosed, and my urologist said that it could explain all the symptoms.

I am amazed that your husband's uro said it could be CIS and didn't do anything. Immediately after I was finally diagnosed we began BCG. My uro even had me cancel an imminent trip of three weeks to China since he said that CIS is high grade and MUST be treated asap.

This is not something to be treated lightly, and it needs to be taken care of as soon as possible. I am not really familiar with the medical system in NZ (but I think you have a wonderful, beautiful country!) but it appears that BCG is the treatment of choice there also.

And no, there are no permanent side effects to BCG (unless you are one of those rare people who have an unusual reaction to it) EXCEPT that it reduces the incidence of CIS by up to 70%. I am now five years out from my initial diagnosis, and completely normal (well, urologically speaking.) I am so grateful to my urologist for my diagnosis and treatment...it truly did save my life.

Hope your husband can have the same experience!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 1 month ago #45448 by mareewifeofgreg
Hi. have just found this site. My hubby has had years of pain, urgency, frequency & meds without anyone being able to say exactly what was wrong but ruled out anything sinister after cytoscopy in 2010 - altho that did show glomerations & mild inflammatory changes. Symptoms worsened over next couple of years but just prescribed meds etc - they thought maybe Interstitial Cystitis which will not lead to cancer.
Then in Jan this year, had cytology which showed 2 out of 3 urine tests showed malignant cells. Oh darn.....after cytoscopy confirmed Follicular Cystitis which CAN lead onto cancer.Uro then said seems likely it could be CIS but didnt really make much of it - just see you again in 3 mths. Now recent cytoscopy confirms CIS & they are talking about BCG, then removal if that doesnt work.
This is all such a shock & now we have done some research re BCG - it doesnt really work if the thing keeps coming back, does it? & removal is pretty drastic.
I guess my question is has anyone else had this FC thing? Seems its rare but is it just a new name for something. Also, what are peoples experiences with BCG? Are there permanent effects on the rest of the body like chemo & radiotherapy?
Researching shows there are some ways we can slow this thing - eg, creating a more alkaline environment as cancer loves acidic etc. Anyone trying these natural methods? Would love to hear from you. Also, we are not in the US so some of your treatments may not be available to us here `downunder`.
Sorry this is so long..............

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